This Transcript is Unedited

DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

National Health Information Infrastructure (NHII) Workgroup

January 6, 2005

Room 705A
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, D.C. 20201

Proceedings By:
CASET Associates, Ltd.
10201 Lee Highway
Fairfax, Virginia 22030
(703) 352-0091

TABLE OF CONTENTS

  • Welcome and Introductions — DR. SIMON COHN, Chair
  • Presentations — Business Case and Business Issues related to PHR:
    • KATHLEEN KRANTZ, Vice President, Greater Omaha Packing Company
    • DR. RITU AGARWAL, University of Maryland (Study of PHR Value)
    • CATHERINE LIBERLIES, R.N., Partners Patient Gateway
    • DR. PHILIP MARSHALL, WebMD
  • Questions, Answers and Comments
  • Committee Workgroup Discussions

P R O C E E D I N G S [9:12 a.m.]

AGENDA ITEM: Welcome and Introductions — DR. COHN, Chair

DR. COHN: Okay. Good morning. Would everyone please be seated? We’re going to get started here in a second.

I guess I should ask: Is Dr. Lumpkin on the line at this point?

DR. LUMPKIN (by phone): I would be.

DR. COHN: Good morning, John. Okay. I want everyone else to be seated. Okay.

Okay, I want to call this meeting to order. This is the second day of two days of meetings of the National Health Information Infrastructure Workgroup of the National Committee on Vital and Health Statistics. The Committee is the main public advisory committee to the U.S. Department of Health and Human Services on national health information policy.

I am Simon Cohn, a member of the Committee and the Associate Executive Director for Information Policy for Kaiser Permanente. I’m standing in for John Lumpkin, our Chair, who is on the phone and participating but has had an injury related to skiing, as we understand; obviously, we’re hoping to have him get better soon.

We want to welcome fellow Subcommittee members, HHS staff, and others here in person, and as always, and we

were reminded a couple of times during our hearings yesterday, that everyone needs to speak clearly and into the microphone, and all that anyone has to do is to be on the Internet listening to our hearings one day to sort of realize that and how difficult it is for people on the Internet to hear.

With that, let’s have introductions around the table and then around the room. For those on the National Committee, I would ask if you have any conflicts of interest related to any issues coming before us today, would you so publicly indicate during your introductions. John Paul?

[Introductions. No conflicts of interest were stated.]

DR. COHN: Okay. What we’re going to do is just talk for a second and then we’ll get into the first panel, and I’ll make a couple of comments, and John, I’ll turn it over to you.

DR. LUMPKIN: This is John Lumpkin. Can I introduce myself?

DR. COHN: Oh, please – please. And do you have any conflicts of interest?

DR. LUMPKIN: No, just as I mentioned yesterday, this is an issue that our Foundation will be doing some funding in and while that’s not a conflict, I just want to put that on the board. John Lumpkin, Senior Vice President of Robert Wood Johnson Foundation, and Chair of a Committee.

DR. COHN: Yes, and Chair of the Workgroup.

DR. LUMPKIN: And the Workgroup.

DR. COHN: That’s right – okay.

And I just wanted to take a minute just to sort of frame the discussion for the day, and John, I was going to ask you to help me on this one. Obviously, the focus for this set of hearings, as well as the last set of hearings, has been on personal health records, and we’ll be having our last panel discussion for these sets of hearings in just a minute or two, as we understand, talking about sort of the business case issues and business issues related to personal health records and other information. I’m sure that you’ll be sharing with us.

After that panel, we’re going to spend some time in Subcommittee discussion, sort of talking about learnings and trying to identify next steps for the Workgroup. Obviously, I think we’re all aware that we’re still trying, I think, grapple and come to terms with, what this is, both the value and really what needs to be done on a national basis relating to this both as a research agenda and potentially as a policy agenda.

Now, John, did you have some comments?

DR. LUMPKIN: I think you nailed it on the head.

We know – as a panel, we believe — since our initial report, that the personal health dimension in which personal health records are a very key component are important for moving forward the informatics agenda.

The question is, this appears to be an arena, an area where things are developing very quickly in a number of diverse ways, and what we’d like to do is figure out where we in our advice to the Department can support the development, yet not restrict it. Clearly, it’s not mature, but there are some things that we hope will come out that will give some direction to how we can assure that the utility that we believe can be available through a personal health record will in fact be preserved through the tumultuous times of markets, trying to identify what’s going to happen.

DR. COHN: I think very well said, John. We’re going to start with Kathleen Krantz and then go to Ritu Agarwal, and then if Phil Marshall comes in – I think he’s on a flight – hopefully we’ll be able to include him.

I obviously am happy that Catherine Liberlies is able to join us. I know you were supposed to be on the panel yesterday but were ill, so we’re delighted that you can come and join us. I realize that your presentation may be not exactly aligned with everyone else’s but it may not be far off, either, since we’re all dealing with the real world issues of trying to implement these things and show value, so I want to thank you for joining us for this panel.

Well, with that, why don’t we start out with Kathleen, with your testimony? Now, what we’ll do is let you each testify; at the end of it, we’ll have conversation and discussions. After that, when we’re doing with all of that, we’ll have actually a break and then we’ll go into Subcommittee discussion for the remainder of the morning, with the idea that we’ll be adjourning around 12 noon, okay? Kathleen?

AGENDA ITEM: Presentation – MS. KRANTZ

MS. KRANTZ: Good morning, everyone. My name is Kathleen Krantz. I’m the Vice President of Technical Resources for Greater Omaha Packing Company, and I would like to personally thank the NCVHS for inviting us to tell our story.

Greater Omaha Packing Company is a privately owned company and it is a beef processing company with around 730 employees, and we were founded in 1920. And I am going to go through this very quickly — we are a third generation, privately owned, located in the heart of corn country. We are a 15,000 head-per-week processor.

[After a computer-related delay.] We’re going to go back, and I’m going to be speaking now – and that was just a little overview of Greater Omaha Packing so you have a little understanding of what we do in the Midwest.

We have around 730 employees, and we have had a wellness program in place for over 10 years. The program that we put in place was to help all of the employees with disease management, to kind of get an understanding of what the culture of our employees, the demographics and everything. We use the services of a lot of different agencies – the Nebraska Health and Human Services, the Douglas County Extension – and then our Steering Committee partnered with the University med center and several other services to actually put our program in place.

And from that, the results that we have had over this 10 years of the program starting way back when with a lot of challenges – we have a bilingual work force, we have a literacy issue, we have several issues that we had to overcome in putting our wellness program together.

But with that, we did overcome those challenges and we are a Platinum Well Workplace company from the Wellness Council of America, of which there are only 15 companies in the country that have achieved this status with the Wellness Council, so it shows the program itself.

I’m going to run through just the best practices that we use, partnering with the SimplyWell folks.

We had to have management buy-in at all levels,

CEO to supervisor. We had to create a cohesive Wellness Team within our organization – nurses, community health, medical insurance, members of a Steering Committee. And we had to collect data with our health questionnaires. We used a qualified contractor, which was SimplyWell, to find the best way to administrate this for our company.

We had a Task Force of staff members to promote and assist in the implementation of our program, and our Health Fairs provide an essential part of the program for information sharing and access of resources for the program, providing an opportunity for health screenings and management of getting the employees involved.

We have the measurement of outcomes of the baseline data. We use the health benchmark program SimplyWell both nationally and regionally to determine the corporate return on investment, which is the piece that is very essential in measuring the outcomes of your program. We utilized these resources of SimplyWell and the Wellness Council of America.

Greater Omaha Packing received the Platinum Well Workplace Award in 2004, and this award is the commitment of the company towards the health and welfare of our employees.

And the goal of Greater Omaha’s employee wellness program is a striving to provide a healthy environment for everyone with an unyielding focus on the health, safety and betterment of both employees and their families.

Through this structure, we have Wellness Committee, the annual Health Fairs, free preventative screenings on site, comprehensive health risk appraisals, on site physicals and education of which electronic education is the last piece of our program.

This gives you a little bit of the process of partnerships that we have formed throughout the years. GOP employee wellness participation statistics – these statistics are derived from SimplyWell. SimplyWell is the third party administrator for us that comes on site to do all of the screenings, the survey, the health risk appraisal, and from the survey I’m going to give you just a little bit of the information.

Eighty-eight percent of all employees surveyed felt that Greater Omaha was concerned about their health and safety. Eighty percent were very or mostly satisfied with their work. We have areas of low risk such as lifting, 82 percent. Little or no stress, 95 percent. Good social support, 90 percent. No exposure to violence, 93 percent. Now, this is coming from the employees that were surveyed through the health risk appraisal, the starting point of the SimplyWell program.

Family history, which is a very significant piece of it, as you can see, with the cultural process of our employee demographics, diabetes is a very, very significant piece to this process, and we are able to focus in with our programs and design these programs to actually match in disease management and prevention.

Diet risk, good to excellent – breakfast, 69 percent; snacks, 69 percent; fast food, 22 percent, two times, seven times per week; fats in the diet, 65 percent – nine percent, all of the time; whole grains, 28 percent; dark, leafy vegetables, 26 percent; heavy salt use, 31 percent. So as you can see, this mixture of the health risk appraisal that was done actually offers an insight to Greater Omaha as to how we manage and educate our employees.

We do have a little overweight problem for which we have a fitness center, and so we’re focusing this year on obesity and getting our employees into a good fitness process, fitness programs.

Now, these clinical findings that I’m putting up on the screen right now are actually from the clinical work that was done by SimplyWell, of which they manage all of the statistics and they supply an executive summary to Greater Omaha Packing with these statistics.

As you can see, we are in our third year of SimplyWell, and we do have some comparisons that I will be sharing with you.

We some areas of concern, some areas that we are going to be focusing on – weight management, improving fitness, coronary risk, cholesterol – so these are all of our issues that we will be focusing on.

The preventable risk scores that you see here are actually a three-year comparison, and they have been able to show us that we have very good risks. From this slide, you see that we have one risk that has actually declined 26 percent from 2002. 2003, we had none-to-one risk, which is a 32 percent decline; 2004, the none-to-one risk actually came down 6.8 percent.

So we are seeing that we have a very significant benchmarking process that SimplyWell has offered in providing a solution for Greater Omaha.

We do have the utilization of our claims management. The SimplyWell program also uses the claims from our health carrier, our insurance company, to determine where we have issues of concern in utilization of our claims.

ER is one area that we have focused on, and we have a communication and education session for our employees on how to overcome using the ER and utilizing urgent care facilities and actually self-care management. We’re posting available physicians and hours from our plan, information about the costs and type of care in the ER, and higher deductibles in plan design.

We actually found out that 45 percent of our employees still need to have a family physician, so we are encouraging the annual physicals on site services and posting the nearby clinics. We also have a physician that comes on site once a month to help our employees in doing physicals, the overview and determining whether or not we have any risks from the employees at that time.

The incentives for completion of the entire screening progress and earned points, the utilization of the screenings – we have incentives that we build into participating in the SimplyWell program. We have a computer center that we’re looking at putting additional terminals in and assisting the employees with sign-up to increase participation in the program.

The SimplyWell program actually gives 3200 education modules bilingually, English and Spanish, which is a prerequisite for Greater Omaha. When we first started our program, that was one of the challenges that I had to overcome, to find the proper partner that could actually offer a bilingual solution. SimplyWell offers that on line.

Customized education-based on disease and risk factors – SimplyWell also offers phone coaches and will actually contact all of the members two to four times per year to actually see where they are on their status of their health tracking for exercise, diabetes management and high blood pressure.

In summary, our health care costs actually were only increased seven percent versus a 15 to 25 percent growth on the industry and down from 35 percent since we started with 2000. In 2001, with SimplyWell, down 35 percent.

Our injury to illness ratio of 5.9 percent, compared to the BLS industry average of 20, actually shows a very strong value in working with our employees. We also have a very low attrition rate of five percent, which is almost unheard of in our industry.

So there are a lot of different things that we are doing. We have educational classes, one-on-one counseling, an information resource library, action plan and focused correlation with decreased coronary risk, smoking cessation, cholesterol, diabetes management. We also have additional work that we have needed in cancer, nutrition and fitness which we are looking to facilitate this year. Our enrollment goals are looking to exceed 50 percent in 2005.

And I’m going to just give you a little brief overview of the personal health records now and remaining HIPAA compliant through all of this process.

SimplyWell, on the personal health records solution, offers a confidential personal wellness profile based on individual employee history. It offers a bilingual website solution, and the PHR accessed on line in a protected website for the employees. It offers employer solutions to the IT development of PHR in the fact that they are the IT department for this program.

The Personal Health Management website – I’ve given you just a little bit of a background here of what it is – and what it offers is the understanding of the wellness scores from the health risk appraisal. It shows the existing problems, the health history, the major risk factors and health findings. It shows the preventative exams, healthy habits, educational issues, health interests, readiness to change, health status – a self-rated health status, and a health status questionnaire.

The advantages of the PHR online digital conversion to SimplyWell – the access to the PHR with health resources and solutions on a specific identified health risk; the consumer protected through individual assigned password for privacy protection. This is the key to that whole process: The consumer has to be protected with all of this health information that they have and SimplyWell offers that solution through the password protection.

It’s an immediate access to educational health resources based on major risk factors and health findings and it offers a confidential consumer wellness profile measured and compared annually, and it also offers the computer literacy training program.

And the lower cost process which I discussed was actually the key for the employer. The SimplyWell PHR, the GOP overall cost – the SimplyWell program is a fee for service so that Greater Omaha offers this program to its employees at no charge, and so that is why we feel that this is a program that should be designed for everyone. SimplyWell charges Greater Omaha; Greater Omaha does not pass this charge on to the employees, so that we can encourage our employees to take advantage of a privacy protected program to live a healthy life style and know what their life style is and have a coach and manager to help manage their health.

The individual investment is only two percent of a total health care premium cost per employee per month. That is the cost to Greater Omaha.

The investment of kiosks to assist the employees with on-site education is something that Greater Omaha has put into our welfare center. We have hired a medical health coordinator, a bilingual – actually a medical doctor

from Mexico that is not licensed to practice in the United States, he’s working on his license, but he can actually be the trainer and educator in helping assist the employees in participating in this program.

And Greater Omaha assists in the conversion to the paperless PHR systems, working with the SimplyWell system in the education of employees. SimplyWell is the third party administrator, managing all of the hardware, software, disaster recovery and IT for Greater Omaha. So again, it is the solution for private industry to actually have a health management system available to a program of the Greater Omaha employees and their families.

The management of the on-site SimplyWell offers the buy-in of program from the CEO, senior management, middle management and the employees, affording creative programming and employee involvement solutions. The continuous on-site training through classroom setting lunch-and-learns using three- to 12-minute snippets from the SimplyWell on-line video training section has offered Greater Omaha a very significant, I would say probably state of the art, solution to managing health care at the employer level.

The executive summary and benchmarking data used to determine our educational programs has offered a very significant piece to the executives of Greater Omaha as we manage the program of health care solutions.

The employee perspective – low attrition rates send out a strong message of the employee acceptance of the programs. SimplyWell is the cornerstone of family health conversion and our healthy life style changes together. SimplyWell offers solutions for bridging the gap of making healthy choices based on individual needs and health risk assessments. Over 1200 employees and family members attend our Greater Omaha Packing Health Fair annually.

What are some of our challenges and benefits? One of our challenges obviously is time constraints of employee education based on the cultural differences of health care in the paradigm shift from disease shift to disease prevention.

The benefit? Greater Omaha has been involved in health and wellness program education for over 10 years and has found a strong partner in SimplyWell to impact change through the utilization of a very sophisticated on-site, on-line program.

SimplyWell is the ideal PHR solution for our employees, offering a comprehensive data and benchmarking solution, a bilingual solution, it’s HIPAA compliant, it’s the third party administrator solutions, and it offers excellent medical resources for disease management and prevention, offering the liaison and acting as the liaison between Greater Omaha Packing and the medical providers to our employees and their family members.

And I’d like to thank all of your for your time in my presentation and I’m hopeful that this Committee can use some of the data presented today in looking at the private sector in actually helping to control rising health care costs in our country. Thank you.

DR. COHN: Okay. Kathleen, thank you very much. A very interesting presentation. Now, what we’ll do is let everyone testify and then we’ll have discussion and questions after that, so – now, Dr. Agarwal, how about if we have you next and then Catherine and Phil, do you want to introduce yourself?

DR. MARSHALL: Sure. I’m Philip Marshall and I’m the Vice President of Product Strategy for WebMD Health.

DR. COHN: Okay, and obviously thank you also for coming, and we’ll let you be the final speaker on the panel.

DR. COHN: While we’re changing computers here, I just do want to remind everyone who’s listening if you could mute your phones when you’re not asking questions or making comments so we don’t hear the static on the line. Thank you.

AGENDA ITEM: Presentation – DR. AGARWAL

DR. AGARWAL: Good morning. It’s a pleasure to be here. I’m Ritu Agarwal, and I’m here wearing a few different hats today. I’m a Professor at the Robert A. Smith School of Business, University of Maryland.

I’m also the Executive Director for the Center for Health Information and Decision Systems, also known as CHIDS, and this is a Center that was recently founded at our school. The goal of the Center is to conduct some leading edge research and provide top leadership to the use of advanced decision and information technologies in the health care industry, so we are doing research on a variety of different topics related to how IT can help health care in delivery, in supply chain management and so forth.

This is the agenda for my presentation today. I was told I have about 20 minutes, so I have probably more slides than I can go through, so some of those are just take-aways for you. I also want to point out that the research that I’m reporting on today has been summarized in a couple of reports that are available. If you would like a copy, I’d be glad to provide those.

I’m going to start by spending a couple of minutes on the dilemma in health care, and I’m sure what I will say will not be a surprise to anybody in this audience, but nonetheless as I set the stage, I thought it would be useful to reflect on what’s different about health care and how does health care stack up with other private sector industries that we do research in at the Smith School.

I’m going to talk a little bit about some of the opportunities afforded by information technology in the health care sector, and then I’ll move on to the bulk of my presentation, which is a field study of personal health records; talk a little bit about the respondents, the usage patterns, and most significantly, the perceived value of the personal health record and what are the dimensions along which this value is manifest.

And then, finally, I’ll speak a few minutes on what is it that drives patients’ perceptions of value, and then, if they do see value in these personal health records, what is it that it leads them to do? In other words, how does it affect their final usage of this new technology?

And I’ll conclude with a few minutes on some ongoing studies that we have related to HIT and personal health records.

At the Smith School of Business, one of the things we try and understand is: How is information technology being used in different industrial sectors, and what is the value that information technology is providing to this industrial sector?

And it’s a no-brainer that information intensive industries such as financial services and retailing and airlines use information technology extensively. One of the things that these industries have to do is to store, process, manage, analyze, transmit, exchange lots and lots of data, and IT is essential to do that.

Interestingly, these companies use IT not just for operational efficiency – that is, doing things at less cost, or faster – but they also use it for strategic value. In other words, to drive some specific business strategies, to try and corner greater market share, to increase customer satisfaction, and so forth.

Yet, as we all know, health care does lag in realizing this transformational potential of IT, and this factor is particularly disturbing in light of the statistic that 15 percent of GDP in most industrialized nations is spent on health care. So arguably the value of IT in achieving both operational efficiency and strategic value in the health care sector should be immense, and perhaps even larger than in financial services or retailing.

There have been a lot of studies that have tried to quantify, well, what’s the benefit of moving to electronic medical records? What’s the benefit of using HIT extensively to store, process and manage medical data? And there is some skepticism about the numbers that are reported, so even as I report these numbers, I would look them with a pinch of salt.

There was a study done by the Leapfrog Group which suggested that computerized medical records could save 600,000 lives, prevent 50,000 medical errors, and save $9.7 billion annually. Even if one halves those numbers, they’re pretty staggering.

There are a lot of areas in health care where additional research and ongoing studies in information systems and information technology could prove to be extremely fruitful. There are lots of stakeholders that would benefit from some research, and I have listed a few of them here – certainly the health systems, the health insurance providers, employers, who are constantly struggling to curtail health care costs, and of course individuals and patients, who are concerned about their well-being and their health care.

Some interesting areas for inquiry – the adoption of information technology at various levels of analysis. And when I talk about various levels of analysis, I really mean the individual patient or the hospital or the individual health care provider such as a doctor or an entire health system, or an entire economy or a country.

There are many different outcomes that one could focus on here. Certainly, health care quality cost and efficiency are important dependent variables to look at, but I think we also need some research that’s focused on trying to quantify the value of this information technology, because ultimately investments in HIT are only going to come if there is compelling evidence that this technology is actually producing some value for all the stakeholders involved, and unfortunately we don’t have enough rigorous scientific studies to demonstrate that value.

In this particular research, the phenomenon that we are focusing on is personal health records, and I am here before the National Committee on Vital and Health Statistics, so I won’t tell you what you have identified as one of the important technologies for the future. But I do want to point out that it is my belief that the adoption of personal health records is really the crucial prerequisite in a virtual cycle in the adoption of electronic medical records across the health system as a whole. And ultimately if the individual patient or consumer does not buy into the idea for a personal health record, it’s going to be extremely difficult to convince higher levels of analysis that this a worthwhile technology to invest in.

The personal health record that we studied in our research – here’s a little screen shot of it – it’s a record that is stored on the individual’s PC. It is produced by a company called CapMed, which is now a division of Bio-Imaging. It is software that is designed specifically for the individual, and the individual maintains all medical information. In this particular instance, the personal health record was not hooked up to any connection of the other Internet group, any larger electronic medical record system.

There are several issues with PHRs that I’m sure this Committee discussed at length yesterday. We know that Americans as a population have a lot of concern about the safety, the privacy and the confidentiality of their medical information.

Clearly, they don’t want their health information shared with anyone without their consent. They have concerns about people hacking into information that is stored on line and gaining unlawful or unauthorized access to personal medical information. And for the most part, they believe that keeping medical records on line in a connected electronic environment such as the Internet is a risky venture at this point.

Now, as a Professor of Information Systems, I know that it is possible to implement security measures, and I also know it is possible to circumvent any possible security measure that is put on line, so I have a great deal of empathy with these concerns that individuals have.

At the same time, I would also argue that some of these concerns are a result of inadequate information dissemination and inadequate education and training, so I don’t think the general populace, the general patient populace, truly understands what levels of security are available for electronic information. But nonetheless, they do have these concerns, and clearly these concerns are inhibiting widespread adoption of personal health records.

Our goal in this research, the overall goal, is to accelerate adoption of personal health records because we do believe that this is going to be a significant and important technology for the future.

The more modest goal in this research was to try and understand the values and facilitators of PHR adoption, specifically: What is the value that patients perceive in a personal health record? What do they use it for? How much do they use it? What drives them to use these personal health records – is it their behavioral characteristics, is it their demographic characteristics?

And our thinking was that by researching a sample of early adopters of PHRs, we would be able to get some insight into what a population of adopters, early adopters, is going to look like in the future, and we could use that information to target and devise implementation strategies to facilitate wider spread adoption.

So we started this research by first trying to understand: What are the specific tasks that individuals believe are important to the management of their health care? And we did that by interviewing a series of users and asking them: What are the tasks that you need to do that you think are essential to the management of your own personal health care?

Next, we interviewed the developer of the PHR to understand exactly how the personal health record was designed, what was the rationale for the various screens, what was the rationale for the work flow that was embedded in the personal health record?

And then finally we surveyed users of the CapMed PHR, and again, these were early adopters, so I think we gained some insights into their behavior that we wouldn’t have gotten otherwise.

And we surveyed them on a variety of different variables, some of which are listed on this slide, but I’ll talk through the details of some of our findings in the next few slides.

We had about 69 percent male respondents and 31 percent female respondents. The response rate to the survey was 24.2 percent, which is, for anybody who does field studies, that’s an excellent response rate. We also did some statistical analysis to determine if there was any response bias in the results that we achieved, and there was no response bias.

The average number of visits to the doctor per year for these early adopters was 7.2, and the average number of doctors seen per year was somewhere between five to 10.

The next few slides give you some additional detail on these respondents. As you can see, not surprisingly, most of the early adopters of personal health records are well educated and have graduate degrees. They also tend to be fairly wealthy, in the middle to upper segments of income. And the median age is around 50 years.

All early adopters of PHRs suffer from some type of chronic illness. The most frequently reported chronic illness was hypertension, at 30.4 percent, followed next by diabetes, at about 15 percent.

The frequency of use was, for the most part, a few times a year, or monthly, and the duration of use, the most significant response was about 20 minutes.

So, who is it that uses the PHR? In our study, the typical user is male, aged somewhere between 51 and 60, has a chronic illness with hypertension being most prevalent, takes multiple medications daily, goes to the doctor 7.2 times annually, has completed graduate studies, and the household income is $175,000. The typical use is monthly, for 30 to 44 minutes, or a few times a week, for five to nine minutes.

When we asked users what is it that’s important to you in the management of your own health care, and then when we asked them, what are the primary uses for the personal health record, it was encouraging to see that there is a remarkable isomorphism, or mapping, between the health care tasks that patients found most important and the features that personal health records have.

As you can see from this slide, the dominant theme here is the management, storage and processing of data. Users believe that having a medical history archive data storage is essential for managing their own health care. They also believe that the ability to organize and access that data in some useful way is extremely important.

In regards to the primary uses for the personal health record, the storage of family medical history and then tracking and trending my own personal health as well as tracking my doctor’s visits emerged as some of the important uses for the personal health record. So again, there’s a nice isomorphism here between what’s important to the users and what this technology offers.

Okay. If you recall, our research was trying to understand: What exactly is the value that patients perceive as residing in this personal health record? We used a data reduction method called principal components analysis. We had a series of questions that related to perceived value, and when we subject this data to principal components analysis and factor analysis, we emerged with three primary dimensions, or three primary factors, that described the value that patients receive from a PHR. These are:

Structure, organization, and compliance. That is, the degree to which the personal health record helps an individual patient store, manage and process data related to their medical condition and comply with any treatments or medications that their physician might have recommended.

Second, and I think this is a very interesting one, the idea that having a personal health record would improve their relationship and the connectedness with the health care provider. So, patients do believe that having this electronic repository of their personal health information would allow them to have more meaningful conversations with their medical provider and improve their relationship and connectedness that they feel with this provider.

And then finally, patients did perceive that there is convenience and empowerment related to the electronic medical record.

In the next three slides that I’m going to blitz through rather quickly are the specific questions that comprise each one of these three value dimensions, and as you can see, these value dimensions are a rigorous measure. They have been designed and tested through statistical analysis and they are highly reliable, so they can be used as measures of value for any future studies that are focused on personal health records.

All right. Recall that I mentioned that one of the goals of our research was also to try and understand who is it that sees more value in the personal health record, and then, how does this value drive their intentions to use the personal health record in the future?

So this model shows you very quickly the relationships that we were testing with the data that we had. We looked at what were the demographics, what kinds of demographics affect the value; what types of medical conditions affect the value, and then how value influences behavioral intentions.

We used a data reduction and analysis technique called Lineal Structural Equations modeling to test this model, and very quickly, here are the results:

The pluses and minuses and the arrows show you whether the relationship was positive or negative. Let me skip ahead to the main findings.

MR. BLAIR: Could I interrupt for just a sec since I can’t see that? You pointed out before that chronic diseases was one of the major motivating factors. If you could describe just for my benefit – that I understand; but if there’s a third or fourth driving factor beyond the chronic diseases, maybe you could tell me what they are.

DR. AGARWAL: Yes. In fact, I have those right here on this slide. Chronic illness, the use of multiple medications, and the number of doctor visits are three major contributing factors to the perceived value that patients see from a PHR.

Additionally, age is negatively related to perceived value. In other words, younger consumers or younger patients see more value in the personal health record than do older consumers, which is sort of a surprising finding.

Interestingly, education is negatively related to perceived value, which suggests that people who are less educated perceive more value in the PHR, which sort of makes sense if you think about it because with the less educated, the personal health record probably provides a nice and convenient mechanism for storing complex information while the more educated might have other means of accomplishing the same task.

Did I answer your question?

MR. BLAIR: Oh, yes – thank you.

DR. AGARWAL: So, the overall findings from this model were that patients believe that PHRs do deliver multi-faceted value: structure, organization and compliance; relationship and connectedness, and convenience and empowerment.

Perceived value is a strong driver of usage intentions, so the greater the perceived value, the more likely individuals are to use this personal health record in the future, which immediately suggests as a policy matter that there is a need to devise strategies that will amplify the perceived value.

We also found that value perceptions differ across patient populations, and drawing upon research that we’ve done in other sectors and drawing upon research that has been done on the diffusion of innovations, particularly ecological innovations in general, there is a policy implication here of targeting opinion leaders and champions who would serve as the primary role models and diffuse this technology to the general populace as well.

We do have a series of ongoing studies, and I’d like to spend a couple of minutes talking about some early findings from these studies.

As I had indicated earlier, virtually every study of personal health records suggests that privacy concerns are paramount in the minds of patients, so we have recently started a study examining privacy concerns related to PHRs: What are some of the desired features and capabilities with respect to privacy that patients want in a personal health record? What are the adoption barriers beyond privacy?

And then, how do these technologies influence patients’ choices to seek out particular doctors or to seek out particular medical facilities? In other words, does it matter to me: If I have a chronic illness, am I going to look for a hospital that has electronic medical records or not? Is that an important decision criterion for me?

We’re also doing a study of the adoption of mobile technologies by doctors but I won’t be able to report on that today.

Okay – so what do patients desire? What features of the PHR are most important?

Again, the data storage management, data processing facilities, emerge as the most significant, so recording medications and immunizations and tracking and trending my lab results and visit and recording my personal and family medical history are important, but also notice the green bar on this slide – assurance that my medical information is safe and secure is extremely critical for users of the PHR.

DR. STEUERLE: A question – could you give a list of multiple choices resulting from that or did they

actually just speak randomly and you define what they said?

DR. AGARWAL: We had 12 choices to pick from, and I’m reporting the first six; here are the top six. But we also had a write-in where people could enter whatever else they had concerns about.

Adoption barriers – we asked the question, what are the concerns that keep you from using or endorsing personal health records? And the color on this slide is a little bit off, but the bar to your extreme left should be the blue bar and that those are concerns about privacy. Concerns about privacy and cost dominate the mental model that individuals have about PHRs, and those are the primary obstacles that are stopping them from adopting this technology in a more holistic fashion.

The influence and choices – does IT adoption by doctors and hospitals influence your choice of using a particular medical provider or a particular medical facility? These data and results were surprising to me. Approximately 50 percent, or 49 percent, of the respondents said either yes, definitely yes, probably, or it might, but another 20 percent said no, but it should. In other words, there was a significant proportion of the patient population whose decisions in the future might increasingly be driven by either the doctors’ or medical providers’ adoption of electronic medical records, personal health records, or the medical facility’s adoption of the same technology.

Okay, so let me just quickly conclude here. We believe at CHIDS and at the Smith School that health information technology does provide an absolutely outstanding opportunity to transform health care, just as other industrial sectors have been transformed over the last three decades through the application of IT.

The business case is quite compelling, but we do need lots more targeted studies. We need lots of targeted studies that specifically quantify what is the value of the personal health record and the electronic medical record not just on patients’ perceptions but also on longer term outcomes such as the cost and quality of medical care.

A PHR adoption is a critical prerequisite to infusing information technology more widely through the health care system. Patients do see value, but they have concerns related to privacy and other issues, and some of these concerns can be alleviated through information dissemination, through training and empowerment programs. Certainly, the cost-related concerns can be alleviated somewhat by giving the technology away – in other words, by inducing employers to participate in some of these programs where personal health records would be made available to their employees free of cost.

And that is the end of my presentation. Thank you very much for your time, and I will entertain questions later.

DR. COHN: Okay, thank you for a very interesting presentation – thanks. Catherine Liberlies?

AGENDA ITEM – Presentation, MS. LIBERLIES

MS. LIBERLIES: Hi, it’s Catherine Liberlies, and I am a nurse at Mass General Hospital, part of the Partners HealthCare, and have been asked to speak about the Gateway messaging system that’s used in our facility from the nurse’s perspective.

I have been at a practice, Women’s Health Associates, internal medicine practice of approximately 17,000 patients, for the last 13 years and have seen the pre- and post-Patient Gateway.

Patient Gateway provides secure Web-based services for our patients, clinicians and staff. Partners launched this portal access in February of 2002 and there are approximately 20,000 users of Gateway messaging at this time.

Our practice in women’s health invited our patient population to access this service in June of 2003 and at this point we have about 2,000 users. Administrative and clinical care tasks are managed through Patient Gateway.

Patients have access to resources for care that include messaging, requests, chart information – which at this point is somewhat limited; their medications and allergies are easily obtained but not their full record at this point; provider practice information as well as a health library.

Administrative requests include prescriptions, appointments and referral authorizations.

This access is available for all non-urgent issues.

From the nursing perspective, Gateway promotes greater efficiency and a time management in an increasingly demanding practice. It offers a high availability to the patient, better communication with patients, faster response time, easier, more complete documentation, and a smoother workload, using the peaks and lulls of our day.

It avoids wasted time on the phone, unnecessary interruptions for certainly non-urgent matters, incomplete requests and delays.

The Web portal links directly to the patient electronic record, permitting review of patient medications, problem list, recent visit notes, and lab work as well as radiology studies.

Gateway messages can be viewed and prioritized more efficiently than phone contacts which involve, again, unnecessary interruptions and call-backs.

The flexibility of Patient Gateway allows patients with Web access to initiate a message or request at their convenience. Messages appear well thought out and clear, lending to a greater efficiency on our end.

Our response time is improved as well for these non-urgent issues. Patients initiate messages that require physician input and plan; we’re able to forward this directly to the provider via link. These can be addressed by the physician between patient visits, from satellite offices, and at home by providers with remote access.

This enables the nurse to obtain and provide the patient with a plan of care from their physician at the time we discussed results or other issues with our patients.

This entire exchange between patient, nurse and physician is easily threaded and incorporated into the patient’s electronic record. Documentation, therefore, is complete and thorough.

For example, one of the ways that patients use this with their prescription refills – it’s time-saving – is that medication requests are made through Patient Gateway by the patient and it prompts the patient to include all the necessary information. This eliminates transcription of phone requests, calls to clarify or obtain missing information.

I included a little part of the window that patients will come to when they want to request their prescription and there’s even right away some information about just follow-up with their physician within the year, some reminders and things that save time in the long run for all of us. They’re encouraged to check with their pharmacy prior to requesting this renewal so that, again, they’re not wasting the time with refills that are already active.

What they can expect with regard to turnaround time for their prescription to be filled, how they should handle narcotics and new prescription requests – this further eliminates a lot of back-and-forth that we had been dealing with prior to this access.

Patients then are able to review their medication that they’re requesting and insure that the medication, the dose and instructions are clear, and confirm on that request that this is what they’re asking for, and if there’s any discrepancy, where that discrepancy – if an outside cardiologist has changed one of their cardiac medications, this is easily noted in there.

So all of this has gone through and saves an enormous amount of time as the patient’s taking the initiative to get this information to us.

Once we receive this information, it’s very easy to process. We link immediately into a patient record from Gateway and proceed to fill the prescription or handle it, whether it be narcotic or controlled substance, in a link manner also to the physician if there is need for further conversation. So the efficiency of it is very helpful to the nursing practice.

It also will cue the patient for pharmacy information et cetera so that all of this information is complete.

They review and complete the prescription request from the screen and they’re reminded about, again, the physician yearly visit and what I have just reviewed with you.

Pharmacy information is provided and confirmed, and as I said, what we would do then is either fill the prescription or go ahead and mail out a printed prescription for the patient.

All of this information, again, is documented directly into the electronic record, so your documentation is complete.

Some of the added benefits that are helpful on our end is the patient can click on to the medication that they are requesting and have information provided for them specifically on that medication, better educating them as to their medication and side effects and so forth.

Our health care providers’ attitude and input on Gateway use has clearly increased since we’ve used it. There was some hesitation prior to our starting up that this was just going to be another form of access to overburdened providers. Now, providers generally have relayed satisfaction with better management of refills, referrals, appointment requests, and overall improvement with office efficiency and practice communication.

The future plans for this access for our patients will be that they will be able to enter a journal and actually will be prompted to do this prior to their annual exam to update on any family history changes, to review their medications. This hopefully will cut down on the number of medication requests that go on, having to handle all at one time at the annual visit.

Also, reminders about health maintenance issues, that they are due for whether it be mammograms, mammogram screening, colonoscopy, et cetera. Again, with the health maintenance piece of it, when they do go to the site and are reminded that they are due for this, they can click on this site and obtain in depth information about what the procedure is, et cetera, for those who are new to it.

Unfortunately, I do not have the slides that I had planned for today, and I apologize for that. I will, however, leave you a very detailed picture of what Patient Gateway is and a lot of data with this that will give you a real picture of how it works in many dimensions, how it’s grown, what’s prompted its growth, and that should be very helpful. It really wasn’t in the scope of what I was asked to do; therefore, I have not included that in what I talked about. Thank you.

DR. COHN: Well, Catherine, thank you very much. We’ll have questions and discussions afterwards.

Phil, thank you very much for coming, and we’re swapping computers now – is that – great.

AGENDA ITEM: Presentation – DR. MARSHALL

DR. MARSHALL: Well, thank you very much to the Committee for having WebMD participate in this important discussion. It’s a pleasure for us to be able to present to you some of our perspective around the business issues of personal health records. Hopefully, you’ll find it interesting and helpful.

I have a brief presentation prepared today which describes a number of those issues – the product, its place in the market, et cetera. I thought that it might be helpful to start that presentation with a summary of the presentation just so you understand it in its entirety up front.

Personal health records are beginning to play a critical role in the evolving landscape of consumer centric health care. Although EMR systems and a national health information infrastructure will definitely provide valuable data to PHRs in the future, self-reported lab and claims data have already become the lifeblood of the WebMD consumer centric PHR.

By making a longitudinal, portable profile available to consumers and care providers, PHRs can help facilitate better communication, higher quality care, and lower health care costs.

Today’s PHR at WebMD is already achieving many of the following goals: Integrating self-reported and professional data, including medical and medication claims, to create a complete profile of health history and health status; facilitating optimal benefits choices, including health savings account participation within employers and health plans, specific to the individual’s health and financial status; facilitating education around and optimal selection of treatment options; facilitating targeted, personalized information and messaging to consumers that can impact key health issues; and sharing health data, essential health data, with care providers.

And we believe that an opportunity exists for a public/private collaboration whereby Federal support for PHRs and related standards and private sector innovation

can foster even greater personal health record success.

And so that is the summary of the presentation. What I’d like to do is to share some of the details around our experience now and some of our business issues, opportunities and challenges.

The personal health record is a part of a larger framework at WebMD certainly. Electronic health records is part of practice services. Payer systems and solutions as part of business services and the personal health record comprise all-important parts of the WebMD framework, providing decision support to providers, to consumers, and to payers.

But increasingly, the personal health record is going from a back seat to the front seat and becoming the foundation for standardizing data in a member specific way from a number of data sources. Those data sources certainly include the consumer themselves – self-reporting data – and we take that data along with data brought in from a number of professional sources including, first and foremost really, medical claims and medication claims, but also electronic health record data and laboratory data.

We bring that all through the same filtering system. We standardize that data, using a coding nomenclature foundation. And that results in a set of health risks, medications, conditions, test results, immunizations and other standardized data that really describe the essential data and profile for that person.

That information is then used to drive decision support applications, and those applications include:

Personalized messaging and content in order to engage the consumer in their health care. Data sharing with care providers, sort of the essential data, can be available at the point of care.

Benefit decision support applications to help the person choose optimal benefits.

And health savings account and flexible spending account contribution.

Provider decision support and, as stated, treatment decision support as well.

And I’ll show some examples of these.

Let me give you a status of the marked momentum that our personal health record is beginning to have. Approximately 15 million people have access to WebMd’s personal health record through their employers’ or health plans’ website currently. Over 20 million unique visitors to WebMD.com each month provide an opportunity to offer even greater personal health record access.

Personal health records can integrate self-reported and professional data. We have six professional data feeds that are enabled today, including claims and lab data. Over 20 data feeds are planned for 2005.

Personal health records are driving valuable services today — personalization of health and benefits information, benefit decision support, treatment decision support, and targeted clinical messaging. The WebMD personal health record is poised for future success with greater data gathering and sharing through the continuity of care record standard with potentially multiple EMRs and greater data portability through identification and authentication solutions.

Some of the benefits of the personal health record that we’ve discovered through our end users, consumers, are that it insures that a private, portable, longitudinal health record is available across the continuum of patient care, making essential health data available wherever and whenever it’s needed; enables a common profile to drive secure, targeted, and personalized information and services, leading to higher consumer engagement, satisfaction, and ultimately positive behavior change.

Within an employer or payer specific environment, the personal health record facilitates optimal plan selection and health savings account participation.

Our personal health record is offered as part of the health and benefit management solution website for employers and payers as well. The benefits to them of having this solution – the personal health record is part of their overall health and benefit management website – is that it provides a centralized health and benefits profile for employees and members, resulting in increased consumer engagement and awareness of their health; improved decisions around benefits, treatments and providers.

It enables profile-based, targeted messaging that addresses key health issues. It increases the value of aggregate data reporting and it enables essential health date to be available at the point of care and encourages conversations with care providers, ultimately, we believe, improving quality and lowering costs.

Let me show you now some examples of our personal health record implementations and describe them so that this may become a little bit more concrete as to what we’re offering in the marketplace and the kind of use that it’s getting.

This is an example of a medication summary page, the person’s current medications listed. Each of the types of information in the personal health record, be it conditions, medications, test results, immunizations, surgeries, et cetera, is organized in this summary form, and this can be self-reported and/or imported information.

As a person opens that particular item, they’re able to go deeper into the details of that particular item – in this case, a particular medication. The user can determine whether this item might be current. They can hide sensitive information from viewing by others. We offer a link to related articles and products, again drawing from that centralized, controlled nomenclature foundation. And they’re able to review data that was imported from third parties. I’ll cull out that we do offer at the top of this particular item the links to the related content but also related to other decision support applications, and I’ll show you those in just a moment.

Another example of how we’re leveraging imported claims data is to summarize that data in the Visits tab of our health record. Taking in-patient, out-patient and doctor’s office claims data, we’re able to summarize that in the Visits portion of the health record as well, giving a person some insight into their historical visits and, when shared in the health record summary that’s sharable with care providers, this visit history can provide valuable insight.

The end user is able to track their biometric data over time, be it self-reported – but we also have some experience in bringing in imported data from medical devices as well. This particular example shows data that was brought in from an implantable blood glucose monitor and so you can see how the user was able to track that information.

The health record summary is available for printing, faxing, or electronically sharing with care providers, and although I realize that the print is very small here, perhaps you’ll trust me that the essential health data is captured in this particular summary form.

Perhaps more importantly, however, are those services, decision support applications, that the personal health record can drive. For us, the personal health record contributes valuable information into the overall profile of the user that drives the personalization of our website experience. That’s part of our value to our markets, to increase the engagement of users through a more personalized experience, giving them a “My Health” guide that lists out all the resources and information in a prioritized way that the user could interact with.

Medication and medical data from claims can help the user better anticipate their health care utilization, their costs, and lead them to the right health plan, flexible spending account contribution, and even health savings account contribution.

Shown in this particular example is how a person leverages their health history to be able to anticipate the numbers of episodes of care that they may be able to anticipate for next year, and because we have all of the attributes of their medical and medication plans, also included in this database on behalf of our employer or health plan clients, we’re able to show the user what their out-of-pocket costs might be, given different plans for which they’re eligible. And a personal health record provides important data to be able to help that modeling process.

This was the application that was shown at the link of the previous medication details page. Medications in the health record that are self-reported or imported from third parties link directly to our drug compare product to facilitate appropriate drug switching. Generic alternatives are shown in this example. Shown here is an example of how a person may compare their medication with alternatives based on their drug benefit design and formulary.

Finally, targeted, secure messaging. The user’s health record can be used to deliver targeted, secure communication to members. A drug recall notice targeted to users on that particular medication is shown in this example.

We believe that personal health records are poised for even greater success in the future. We believe that the personal health record industry is at the very beginning of a very, very long and successful life. We believe that in the near term, we’ll be able to realize greater connectivity and greater portability for the personal health record.

Shown here are some examples of that thought, where communication allowing the user to take action with their information and being able to find out who’s accessed their information and from whom their data was imported are all-important parts of that strategy.

With any new technology, there are challenges. Challenges that we face today are uncertainties around whether HIPAA allows, enables or even perhaps requires payers and providers to make personally identifiable data available to consumers using a PHR; technical and business complexities for health plans, employers, and other entities in making claims data, lab data and other clinical data available for use within the PHR; the lack of standards and incentives for EMR/PHR data exchange, although I should note that certainly those standards are now emerging; and finally, the nascent demand by consumers to take an active role in managing their essential health data to insure that accurate and up to date information is available for themselves and for care providers.

As stated earlier, we believe that there is an opportunity for public and private sector collaboration where we can all support the PHR as an essential part of the health information technology framework by encouraging entities such as employers and payers to offer private, portable, standards-based, and interconnected PHR as a central part of their consumer-facing health and benefits management strategy.

We do believe that there are opportunities on the public policy side as well, and I’ll list out some of those ideas:

Continue to support the universal provider identifier.

Support the CAR standard for information exchange between PHRs and EHRs.

Support standards for common data fields stored and shared between PHRs and EHRs.

Continue to support SMOMED CT as a common reference terminology standard and as part of the National Library’s UMLS Metathesaurus.

Support the creation of a set of best practices potentially for information security.

And support government employees and CMS beneficiaries being among the first to be able to benefit from this new technology.

This is the same slide that I went over at the beginning of the presentation; I won’t go over it again here except just to summarize and say that personal health records are not only a trickle down and follow on to a doctor-based EMR system. Personal health records are not waiting for a national health infrastructure in order to become useful. Personal health records are becoming useful today. They’re being used, they’re bringing in data from a variety of available data sources, and we believe that there is a long life ahead of them.

Certainly, a national health infrastructure and the greater use in electronic medical records will drive even greater use and value in them. We believe a public/private collaboration is appropriate to help make that future possible.

And again, I appreciate being able to participate today.

DR. COHN: Well, thank you very much. I think there’s been a request that before we get into the question and answer period that we give everybody about a 10-minute break, and I think I can see people smiling, so why don’t we take a 10-minute break and then we’ll come back and have questions and discussion and then we’ll transition from that into sort of workgroup discussions of next steps.

[Break at 10:37 a.m.; session resumes at 10:50 a.m.]

Questions, Answers and Comments

DR. COHN: Okay, would everyone please be seated.

We’re going to get started here in just a second.

Dr. Lumpkin, are you on the line, too?

DR. LUMPKIN: Yes, I am.

DR. COHN: Okay, good. Okay – questions, comments, from the Workgroup? Robert?

MR. KAMBIC: This is Bob Kambic. I have questions for Kathleen Krantz and for the doctor for WebMD; I’m so sorry, I didn’t get your name.

DR. MARSHALL: Marshall.

MR. KAMBIC: Marshall. Ms. Krantz, if you could just maybe elucidate a little bit more on the cost savings of the PHR. Do you have a little bit of a history of what you were paying before you started to use this sort of PHR wellness program? What were you paying before and what are your payments now in terms of the cost per employee?

MS. KRANTZ: Well, actually, the cost savings were generated through the reduction in claims, our health care claims. That’s another piece to the managing the process, is reduction in claims and the cost of the claims.

Looking at the big picture of the health care costs, we have been able to take our negotiated claims premiums and when the rest of the country was at a 15 to 30 percent increase, this year we successfully negotiated a 4.4 percent decrease in our premiums by the utilization of what we have been doing. So I think that is the very strongest correlation that I can give to you on that particular issue.

MR. KAMBIC: You attribute that totally to the use of the PHR, no other factors?

MS. KRANTZ: I would say that it’s a combination of all issues. Without the PHR, you don’t have any benchmarking, you don’t have any data; it’s a fluff program. You have to have measurement tools and you have to have people recognizing that they need to make actually changes within their behavior. So this has been a behavior-based program in the fact that a healthy life style does not happen overnight; it’s a long, tedious process. And education to the employees and providing them the tools and resources is the biggest key to the success of the program.

And there are still a lot of challenges, but the two prongs are employee/employer. It has to be a win-win for both. And that’s really, I think, the message that needs to be sent.

DR. COHN: Kathleen, can I just clarify that for a second because I just want to make sure that I understand? Because I think what I heard you present was really an excellent, very comprehensive, employee wellness program of which one element was a PHR, and I didn’t misunderstand that, did I?

MS. KRANTZ: That is correct.

DR. COHN: Okay, because I was just listening to Bob’s question and I just wanted to make sure that was – I mean, what you have is an excellent example creating major value for your company and I applaud you for it, but the PHR is an element of that.

MS. KRANTZ: Yes, it is.

DR. COHN: Okay, correct.

MS. KRANTZ: It’s the final frosting on the cake, if you will.

DR. COHN: Yes, exactly. Okay, thank you. I’m sorry, Bob; you had another question?

MR. KAMBIC: Yes, for Dr. Marshall. Are there any recognized standards that WebMD doesn’t use? In other words, do you have proprietary standards or will you accept all HL7, SNOMED and so on?

DR. MARSHALL: Historically, we have preferred HL7 feeds in the environment in which we work, which is with oftentimes large employers and health plans. We’re faced with non-standardized data formats and in fact most oftentimes non-standardized data formats.

In order to fully leverage the personal health record, however, we need to take advantage of those data formats and therefore have invested a great deal in being able to accommodate a variety of formats, file types and frequencies.

MR. KAMBIC: So which mapping programs do you use, then?

DR. MARSHALL: We have an internally built system of data standardization.

MR. KAMBIC: Do you plan to sell that and market that also?

DR. MARSHALL: It’s not our plan to sell that into the market currently. However, of course, on our payer solutions front with business services, our business services division, Envoy, certainly those abilities to take disparate formats, reformat them, and send them on to care providers and vice versa back to payers is a core part of their business.

MR. KAMBIC: Okay, thank you, Mr. Chairman.

DR. MARSHALL: My response earlier was specifically around feeding the personal health record.

MS. FYFFE: Your last few words there were sort of the definition of a clearinghouse function. I mean –

DR. MARSHALL: Correct. WebMD Business Services, or Envoy, is in fact a clearinghouse business.

DR. COHN: Mary Jo, you’re next.

MS. DEERING: I also have two questions. The first is for Dr. Agarwal, and thank you very much for all of the detail that you gave us.

I thought I heard a disconnect there in that. I mean, granted you were looking at early adopters of CapMed and they were very high income, high education, et cetera and they happen to be men. And therefore, in your study, the users were in fact higher education and higher income and yet after you did your analysis of perceived value, you made the projection that income and education negatively related to perceived value. And I wondered if you could just clarify that for me.

DR. AGARWAL: Sure. When we regressed perceived value on the income and education variables, we did have variation in income and education, so even though the mean values tended to be towards the more higher educated and the more wealthy, we still had a nice distribution around that mean value.

So when we regressed the perceived value with these two factors, we found those negative relationships. So even within this sample, that negative relationship was observed.

Now, the extent to which this sample is generalizable to a larger population obviously needs to be examined more closely. We do acknowledge that this was a convenient sample, if you will, because our goal was to try and understand what the value perceptions of these early adopters are. And in this new study that we’ve just

started, we are working with a larger, national random sample of users of various kinds of PHRs, not just CapMed’s PHR, so I should have some results from that in two or three months to report on.

MS. DEERING: And my question for Phil Marshall — who I would like to note has been a testifier here and helped in some ways launch the discussion of the minimum data set for personal health records and anything else, so I’d like to pay tribute to Phil in that regard, and thank you for coming back with no sleep — I wanted to ask you about – it would take a whole hearing to get into it, but you claim, and you undoubtedly do execute total patient control over their personal health record, even those presumably that are offered through employers and plans. I’m wondering, even in just a preliminary tickler type fashion to whet our appetite, can you give us a little indication of what your consents and authorizations look like? Are there any issues there? And from the employer and plan side, is there any resistance to this notion of total control? Again, I know that’s a much lengthier discussion, but if you could just maybe point us in a few directions.

DR. MARSHALL: I will try to give you a flavor of it. Certainly, privacy and security are first and foremost to our business. And in working with different clients,

large employers and health plans, some have different business partners such as intervention specialists, intervention third parties that do clinical interventions on behalf of their population. And so sometimes it is encouraged upon end users that they do allow the disclosure of their information directly to those intervention specialists so that things like disease management, processes of that type, can take place.

However, it is a consumer-controlled health record, as you note. The messaging that goes to end users such as was shown in the secure message center in an earlier example goes in a broadcast or narrowcast kind of way without disclosure of personally identifiable data to those sending it or facilitating its sending.

DR. COHN: John Paul’s next. And just for people’s knowledge, we have Jeff after that; Eduardo, Kathleen, Gene – have I missed anybody else? – and then –

PARTICIPANT: Kevin last.

DR. COHN: — okay.

MR. HOUSTON: I have a number of questions. Dr. Agarwal and is it “Liberlies”?

MS. LIBERLIES: Liberlies.

MR. HOUSTON: Liberlies, sort of one question but sort of two different angles. Have you tried to quantify the patient’s perceived value – I know you talk about sort of the value proposition to the patient – has it been quantified? Is there any quantifiable information, whether it be dollars or – this is a quality issue, rather than quantity issues. And I guess the one for Catherine would also be: Has the improvement in office efficiency been quantified? So, sort of the two quantification issue questions I have.

DR. AGARWAL: Well, when we do survey research, we do try and quantify the qualitative data as well, so I do have numbers on each one of those value dimensions that I talked about. And essentially those are on an interval scale, from 1 to 5, so I have numbers in the range of 3 to 4, and those are statistically significant from zero, or the mean value, so I can make the assertion that –

MR. HOUSTON: I’m speaking more so like has there been a dollar impact on patients to these portals, rather than a quantification from a statistical perspective. I’m looking for what does it mean to patients? Have they actually seen a reduction in cost, something of that sort?

DR. AGARWAL: Yes. Unfortunately, as I had indicated during my presentation, I’m not aware of any scientific studies that have attempted to quantify it in dollar terms, and I would like to suggest to this Committee that that’s an important set of studies to undertake for the future. We don’t have ROI studies on PHRs.

MS. LIBERLIES: Yes, actually within the Partners health system, this is tracked and followed. The patient cost at this point has been none; there’s been no added. But the cost and what this will present down the road is being looked at and projected.

I have provided that in the information that I think Michelle will distribute, this is a lot of data of that type that’ll give you the numbers and –

MR. HOUSTON: Could you sort of summarize what you think in terms of overall practice efficiency?

MS. LIBERLIES: I apologize. I really don’t have those numbers in my head for you.

MR. HOUSTON: But you do have them?

MS. LIBERLIES: They’re clearly drafted and available, broken down very clearly.

MR. HOUSTON: Okay. That would be great. And I do have one question for Mr. Marshall – well, actually two. Sort of the essential data set was included in your presentation. You had this concept. How did you arrive at what was in your essential data that was included in your PHR? And I guess the second question is, have any allowances been made where an employee changes jobs, or retires, and still wants to access the portal? I’m assuming the payment for the access to the portal has been through the employer or through a payer. How do you accommodate that person who’s changed jobs or retired and still has a desire to interact with the portal?

DR. MARSHALL: So a couple of points first on the essential data set, or the minimum data set, as previously discussed.

The WebMD personal health record was created without the benefit of there being standards or guidance in this area and so we focused on conditions, medications, test results, surgeries, allergies, and health care visits. I don’t think I’ve left any major categories out. That was our initial focus; that continues to be our focus.

With regard to the data details which sit under each of those categories, again we didn’t have any guidance in that area. We created those, primarily driven through the data that should be made available to care providers based on our clinical experience in our organization as well as based upon the data that is made available through professional sources like claims data. And so that’s really what’s guided our internal personal health record in the data it contains.

Now a separate, a slightly separate, issue is an agreed upon minimum data set that would be exchanged as part of a common exchange mechanism. And there I do think we have some benefit of the continuity of care record work that’s taken place. We do participate in that effort. And internally, between our own electronic health record systems and the personal health record also, WebMD has made some effort to arrive at an agreed upon minimum data set that would be exchanged between the two.

MR. HOUSTON: Would that sort of data set be available? Is there a description, something that could be made available?

DR. MARSHALL: As soon as we expand beyond internal WebMD to connect with disparate EMR systems using that CCR-based exchange mechanism, that data set will be published at that point. But I’ll have to wait until that time arrives.

As far as your second question, which had to do with what happens when employees change jobs, or a similar question, what happens when a member of a health plan may no longer be a member of that health plan and they’re using our personal health record, we do have mechanisms today whereby that user can have portability of their information. We have plans for expanding that out in order to make it ultimately portable between whatever point of access at WebMD they may choose to go through.

There are certainly some business issues there as well. There are organizations sponsoring the personal health record which are more inclined to support that, some less inclined to support that, and we work with them to understand the value of portability within WebMD across the different touch points.

MR. HOUSTON: But if I’m a patient and again I decide to retire – God hope I can do that someday sooner rather than later, but –

DR. VIGILANTE: Soon?

MR. HOUSTON: I’m young, but I still want to retire, you know.

[Laughter.]

MR. HOUSTON: Jackie’s, you know, my hero! And I say, oh, I really want to keep using this because I have some chronic condition that your product does a great job of helping me with about the quality of life. I mean, can a patient continue to use it, though?

DR. MARSHALL: In fact, the personal health record is offered today through the WebMD health manager, offered as a subscription service through WebMD.

As we continue to expand out our plans for true portability between the touch points, I guess, or access points, at WebMD, we believe that that will become a place whereby people can have continued access to their health information.

But we also offer to our clients ways for end users, when they no longer show up on, for example, the eligibility file that drives oftentimes identification and authentication of end users, the ability to print or electronically download for their own purposes that information as well. And so we try to give a variety of ways that they can add portability.

MR. HOUSTON: Thank you.

DR. COHN: I think Mary Jo had a follow-up.

MS. DEERING: I just wanted to ask you to really stay with that a minute because I’m still not quite hearing. Can John right now take his – let’s see – UPitt WebMD personal health record and automatically go and subscribe on line as a private citizen and dump his data in? And would there be any not only technical data issues but business issues related to his doing that?

DR. MARSHALL: Currently, with the WebMD health manager, which is the access point as the subscription service on WebMD, we are finalizing the ability for that to occur. But it is not available at this moment.

DR. COHN: Okay. Jeff?

MR. BLAIR: Dr. Agawar, thank you very much for conducting that survey. I think that information was very useful and helpful. It was based on the population of users from CapMed –

DR. AGARWAL: Correct.

MR. BLAIR: — and in the break I had the opportunity to ask you some follow-up questions, and I think your answers may be, I think, helpful to the rest of the Subcommittee as well.

I understand that you’re planning on doing another broader survey; so I have two questions. Number one, your broader survey – what are the major issues or types of information that you hope to determine from the broader survey, and when will it be available?

DR. AGARWAL: The second study that is currently ongoing is focused on understanding the privacy and security concerns that individuals have with personal health records. And our hypothesis going into the study is that when individuals strong messages from their health care providers and other trusted stakeholders, they are less likely to have severe privacy concerns. Okay, so that’s the hypothesis going in.

In this study, we are sampling both users of health information technology such as PHRs across a very broad demographic sample, but we’re also studying the attitudes of health care providers and doctors towards providing the users with such messages.

So to very quickly summarize: The major focus of the study is on privacy concerns and to understand and provide some policy recommendations on how those privacy concerns can be alleviated. But some secondary objectives of the study are to significantly substantiate and extend the findings that we have from the early adopters of PHRs and to see if those same demographic and behavioral characteristics also show up in this larger sample where we will be tapping into different types of profiles. And that should be available, I’d give a conservative estimate, by April.

MR. BLAIR: Oh, wonderful, thank you.

DR. ORTIZ: Thank you. There’s a lot of different iterations of PHR. There’s your kind of e-health portal that we’ve talked about before, and it sounds like the presentations today have talked a little bit more about the kind of stand alone type PHR.

And I see that there’s definitely value in these kind of stand alone, I’m going to call it “non-integrated PHR” at this point. For example, patients can keep track of their own personal health information; that sounds like a good thing. They could provide a means, possibly, of education, decision support for patients, maybe disease management. And also you could maintain information that they could then supply to their provider. So these are all things that I see as benefits of this.

And although this can obviously provide value, although I do have to state that there’s no evidence, no proof at this point, that this improves important health outcomes – that’s never been demonstrated at this point – my presumption is that you don’t derive nearly as much benefit as when this information is integrated into the medical record. And most importantly, not just integrated into the medical record but actually used by the doctor or some other provider in their clinical decision making process to improve safety and quality of care et cetera, et cetera.

So with that kind of lead-in – and this is for whoever wants to answer it, plus it might also be an idea for some research – I’m curious as to whether information from these non-integrated type PHRs is actually being used by physicians or providers. Not thinking about the portal type PHR things, that’s different, but in this thing, the stuff that’s happening with all these ones that you guys are talking about – are they being used by doctors or whoever the providers are? If so, how are they using it? How frequently do they use it? What do they think about it? What do they view as valuable, or do they view it as valuable? Do they view it as valuable from a patient perspective, but do they also view it as valuable from a provider perspective?

And then – that was kind of more on the individual’s basis – but also from the health care provider organizations, I’m kind of curious as to how interested are provider organizations in integrating this data – it’s not their data – into their own health record? I kind of throw that out as comment, questions and maybe future research ideas for anyone who wants to answer that.

DR. COHN: Well, Eduardo, maybe I should answer that only because I see Mary Jo writing ferociously, and maybe those are some of the issues that we also need to think about ourselves as part of a research agenda. But Dr. Agarwal, a comment?

DR. AGARWAL: Yes. Dr. Ortiz, actually what you have outlined are a series of very important research questions that we have been using as a way to formulate future research studies.

Just to give you an example, the use of data from the personal health record in physician’s decision making – we have been trying to design a controlled experiment where we would provide physicians with different levels of data detail that are essentially drawn from different types of personal health records and then try to understand exactly which aspects of this information is being utilized in a clinical decision making situation. As you can imagine, such a study is incredibly difficult to design. It’s even more difficult to execute. So when we manage to get it off the ground, I’d be happy to come back and report results from it.

Your comment about the health care providers wanting to use this technology – again, my anecdotal evidence in interacting with insurance companies and other major payers of health care services suggests that they are extremely interested in this technology because they see it as a way of curtailing their own costs and improving their efficiency. So I think it’s a matter of time before it becomes more widely accepted as part of the suite of services that they provide.

And the last comment I would make about the value of stand alone versus electronically integrated medical records – clearly that’s the vision that we would all strive towards where there would be this seamless integration from what is entered in an individual PC in a household to their health information that’s stored at a hospital. But I would venture to say that we’re at least a decade away from that because some of the concerns that individuals and doctors have about personal health records and the rate at which such a technology diffuses through the population of adopters, it’s going to take about a decade before that happens.

MS. KRANTZ: I would like to concur with Dr. Agarwal. I feel that the solution, the non-integrated solution as you talk about, Dr. Ortiz, it’s kind of like the cart before the horse, if you will.

I think that we’re at a point where consumer driven health care has been forced on us because of rising health care costs, and I believe that you have to come up with solutions based on needs assessments, awareness and all of these things, and I think that the employer sets a great tone to actually make difference in all of this.

I feel that the consumer, the patient, if you will, has to be part of this whole process, and the only way that they can be part of this process is to educate them and make them aware of what’s actually going on within their health. And the only way that they know what’s going on within their health is to go through a health risk appraisal.

So it’s kind of like starting in small, simplistic types of formats to make change to this paradigm shift of the consumer that everything was handed to him, if you will, for all these years and actually now playing a part that if they don’t want to participate in becoming a healthy consumer, then maybe there’s going to be some other things that they will have to not be involved with, incentivizing these types of consumers to participate and be participatory in knowing what’s good and what’s not good and actually making changes within their healthy components and knowing what they have and what their health history is, family history. All of those things are very, very strong components to the starting point of this process.

DR. ORTIZ: Can I ask just a quick directed question to her, just very simple?

In your experience at your facility, do you have any information that any of this is being utilized outside of your facility by any of the clinicians that see these patients?

MS. KRANTZ: The only thing that I would have is that SimplyWell acts as a liaison so that this is the hand-holding piece that I’m talking about as a separate solution, that we offer a liaison to medical providers, and that’s kind of what this solution is all about.

DR. COHN: Okay, thank you. Oh, I’m sorry – Phil, did you have a comment?

DR. MARSHALL: A very short point. One on semantics. Our definition of integrated versus stand alone may be somewhat different as we use the word “integrated” to describe the personal health record as part of a system that can drive decision making, as I’ve talked about earlier, and not necessarily being the one to do the professional health record.

I did want to point out, too, that our health record summary is going to be part of a launch of a provider portal on behalf of a large East Coast payer and we’re preparing that. And so as we increase the touch points for professionals to have access to their health record summary, we’ll gain certainly a lot more experience with its use in that kind of environment. And I’ll be happy to hopefully share some information about that and the success or otherwise of that with you as soon as we gain more experience.

DR. COHN: Kathleen, I think you’re next.

MS. FYFFE: Yes, thank you. Dr. Marshall, quickly, how many unique PHR users are in any way using WebMD personal health record?

DR. MARSHALL: Although I don’t have the exact number, earlier I quoted that approximately 15 million people have access to the personal health record through the websites that we produce for employers and health plans.

Generally speaking, I’ll give you a couple of just general framework statistics that may help guide that. Generally speaking, we see approximately 25 to 30 percent of users proactively using the personal health record without the benefit of having data imported from professional sources.

And I don’t have the statistic on the exact percentage that uses the personal health record after that. However, I do know that we’ve seen approximately a sevenfold increase in the use of the health and benefit management website in the month after professional data import into the record compared to the same amount of time prior and without the import of that data, so that may give you some guidance on its potential impact for the professional data import.

MS. FYFFE: Okay, thank you. Kathleen Krantz – I love your name, by the way! – in your presentation, I was waiting to see the statistics, if you have them, on the dependence of your employees and how they’re grasping this SimplyWell program. And I don’t mean to embarrass you by asking this question, but does your company provide family coverage?

MS. KRANTZ: Absolutely.

MS. FYFFE: Okay. I mean, I used to work in a managed care organization and sometimes those of us who worried about such things would lie awake at night and say, please, let’s not have a very premature birth because that’s just going to blow all of our claims. So, I mean, do you have any data on that type of thing, especially considering there are so many diabetics?

MS. KRANTZ: Yes, we do have. And I think when you look at that, we have the managed process. One of the reasons that we were able to negotiate good premiums is because of the fact that we do have containment of disease management taking place within our demographics. And yes, we do have a lot of data that we measure not only for employees but for the family members as well. That’s the whole, total picture.

MS. FYFFE: Your decrease in premiums of 4.5 percent, is that correct?

MS. KRANTZ: For this year, yes.

MS. FYFFE: Yes – phenomenal. I mean, do you know if SimplyWell has any other statistics — I mean, could we talk to them? – that would be similar to that?

MS. KRANTZ: I would say that they probably do, but I can’t speak to that issue right now, but I’d be happy to get you that answer.

MS. FYFFE: Yes, okay – thank you.

And I have a question for Dr. Agarwal.

DR. YASNOFF: Kathleen?

MS. FYFFE: Yes?

DR. YASNOFF: The answer to your question is yes, they do have data on other installations and they would be willing to share it.

MS. FYFFE: Okay.

Your presentation was outstanding, and I’m probably going to be talking with you further. I am extremely intrigued by your sense that the adoption of personal health records is key to ongoing diffusion of EHRs because it is very different from my point of view, but you have begun to open up my mind. Can you just talk a little bit more about your hunches with respect to this and why you actually put that on a slide?

DR. AGARWAL: This might be a politically incorrect response, but my interaction with medical professionals as well as all the research that I’ve done on the subject seems to suggest that most medical professionals are quick to adopt medical technologies but are less inclined to adopt information technologies that might cause a significant change in their work practices.

Having said that, it seems to me that the primary driving force behind electronic medical records has to be the individual consumer, or patient, who will in some sense be the activist to set off a series of events in motion that will cause others within the system to adopt this technology as well.

So that’s my rationale and thinking for the statement that I made. Now, that is a hunch or a hypothesis at this point. I think it’s supported by a lot of evidence, but I have not done a rigorous scientific study to report here on that particular hunch, but that was my thinking.

MS. FYFFE: Thank you very much.

DR. COHN: This is a wonderful transition to our next question. I don’t know what Gene’s going to ask, but he was advocating the same sort of view yesterday, so, please.

DR. STEUERLE: Just as introduction, I was actually arguing that in the end, as an economist, I think in the end it’s the consumer who’s the ultimate beneficiary and we always debate whether intermediaries gain, which they do sometimes, or employers gain, but even when employers gain in a competitive environment, it’s ultimately usually the labor force that ultimately gets the benefits, so as argument ultimately I do think it was the consumer.

But I have two questions. The first one is led by a discussion I had almost 30 years ago with a colleague of mine who left a government job to work for a fledgling organization called MCI. He tried to tell me that there was thing that they had called “MCI Mail,” and people were going to sit around and exchange these notes on the computer. I thought, boy, is that going to be really inefficient! And I stopped in my office this morning and I had a hundred emails. Fortunately, my spam filter weeded out 45 of them. It is inefficient, by the way, so –

[Laughter.]

DR. STEUERLE: But I noticed that at least in two of the discussions here that it appeared that one of the things that was being made available was email. And I remember one of our commentators yesterday sort of said sort of as a “duh” factor – duh, we could actually do email back and forth to a medical office, like we do with everybody else.

But thinking of Dr. Agarwal’s last comment about the reaction of physicians, I’m not so sure that within the physician world that there’s much of an incentive to want to respond to emails. I don’t know how they would charge for it. I’m guessing that if the doctor felt that they put down, “Gee, I think you might have this problem but I’m not sure,” they’d be afraid that somebody – they might say this orally to you but they might be afraid that if it actually got in writing, it was something they could be sued upon.

So I’m really curious how far the email discussion – I mean, we’re talking about the personal health records on a grand scale; at the small scale, email, whether we really can go very far.

And then I have a second question which is not quite related; maybe I’ll throw it very quickly. I’m very curious as to how this market is developing between people like Mr. Marshall and Ms. Krantz or Ms. Liberlies in the sense of I’m wondering whether the developers are still mainly dependent upon venture capital or whether it’s starting to become profitable. And when you hear discussions back and forth, I mean, like Ms. Krantz, because you use SimplyWell, is that right, did I get it right?

MS. KRANTZ: Yes.

DR. STEUERLE: Do you hear things that Mr. Marshall says, gee, I wonder if we had gotten some of the features of WebMD or does Mr. Marshall look at your thing and say, gee, there’s some competitive things there? I’m just curious how this market is sort of evolving, just in terms of the demand out there and whether you hear things back and forth that might relate.

So there’s two very different questions. One is, how far can this email be actually stretched, or do we hit some limits fairly quickly? And then the second one, just any reflections on what’s really happening in this market and whether the demand is expanding rapidly or whether the barriers are making it go fairly slowly.

MS. KRANTZ: I’d like to just say that I think that the insurance carriers are offering a lot of the same solutions that WebMD has. I think that that’s great. But I think that that’s maybe for one piece of the consumer population.

I think SimplyWell has come up with a solution that is a more integrated solution for a company such as ours, the manufacturing environment, if you will. I think that you have to have a lot more in place to not hand-hold but actually educate and provide the resources to that segment of the consumer population to make this happen.

We could have gone with the insurance carrier solution, but it didn’t have that final piece of having on-site interaction, which is very essential, and bilingual. So, I mean, the components – there’s going to be a lot out there. There’s a lot of solutions out there. And I think one size does not fit all in this whole process of making this happen as we move forward into this electronic age.

MS. LIBERLIES: On the email front, I know that this has been something that’s overwhelmed clinicians and now at this time have sort of nipped that email as people know it. Partners has their own system, and it’s been through grants that this has been started up.

Getting these emails, if you will, through Patient Gateway is really what they come out as are then channeled to the appropriate source, whether it be support staff, nursing, and nursing will filter then what can be handled at this level, what needs to go on to the physician for their input and et cetera, and then bounce back. There is a clear explanation to the patients that this is for non-urgent issues, so these things are handled at a pace that they can be handled. If it grows too rapidly, I imagine it will be overwhelming. We’re in the pilot stage in a lot of ways now, so that’s not seen.

And again, Partners has its own system that’s now still on grants, so the cost of how this is going to shake out down the road, they’re looking at. I do know that one of the things that was offered through Blue Cross Blue Shield was reimbursement for this type of interaction which at this point Partners has declined.

DR. MARSHALL: I’d like to respond to your question, which really is around the business of personal health records.

Everybody has a little different flavor of personal health records, what it means to them and how it’s used. For us, it’s part of a more and broader integrated value proposition that we bring to sponsors of that capability, be it large employers or be it health plans or rather interested parties such as that.

And for them, it drives consumer engagement and it also helps to drive decisions around benefits and treatments and ultimately providers. And for that, in that integrated health and benefit management scenario, is what they purchase from WebMD.

And so, with regard to that aspect of personal health records, it’s been a successful business for us. It continues to be a successful business for us.

DR. STEUERLE: Just a slight follow-on – you don’t have to give me proprietary information; I’m really asking more generally about the field – is this a field that’s still mainly dependent upon venture capital or is it one that actually is proving to be profitable on a current basis?

DR. MARSHALL: I’m not sure I’ll be able to adequately answer about the field. But with regard to the value proposition we bring into our markets, and again, that’s an integrated value proposition of which PHR plays a role, it is a profitable business for us.

DR. COHN: Okay. Our last question is actually from Kevin, and after that, then we will transition, and we have about 25 more minutes after this to talk about next steps for the Workgroup.

DR. VIGILANTE: Okay – thanks. Actually, I just want to comment on the drivers for adoption. An interesting comment made about physicians adopting technology and this sort of paradox between medical technology and information technology.

Remember when we could call cystectomies the old-fashioned way – you know, with a knife and open people up and that sort of thing? And then all of a sudden there were these things called laparoscopic colon cystectomies and it seemed like overnight surgeons were taking mini-courses and they use the scopes and they don’t use knives anymore.

And so it seems like that technology was – you know, people said “doctor technophobes” — but they will adopt if the proper incentives were there. And there, there were very strong financial incentives to adopt laparascopic colon cystectomy as a procedure.

And I remain skeptical that anything other than strong financial incentives will make them adopt electronic health records.

Now, it could be that at a certain point, consumers will say, well, I won’t go to this doc unless you have this, and then it becomes a financial driver. But short of that, and I think that’s a ways off, I don’t see the PHR in the near future as a strong driver for physician adoption. So that’s not even my question yet. This is a comment on something you raised.

DR. AGARWAL: I’ll answer the question –

DR. VIGILANTE: Sure, please – yes.

DR. AGARWAL: I think the “what’s in it for me?” has not been answered adequately yet for doctors. And clearly the financial incentives don’t exist yet, but I don’t think the doctors at this point even understand what value the technology can bring, if any, to their clinical decision making process.

So until we have some data or evidence to show that you can improve the accuracy of your clinical decision by X-percent or you can reduce the amount of time it takes to make this diagnosis by Y-percent or your patient will recover six months earlier, unless we can show the doctors that, I think the incentive to adopt the technologies just doesn’t exist.

So my response to your comment is that in addition to the financial incentives you spoke of, I think if we can demonstrate to them that there is some value in the clinical decision making process, then that would be a good way to get them to buy in as well.

DR. VIGILANTE: We’ll leave it at that. We could go on for a long time there.

I have a pretty focused question for you, Catherine. This one builds on the question you raised earlier, that when folks project to the benefits of EHRs, the ROI, they frequently talk about labor savings on the provider side. And vendors will say this, and even some folks, academics in this environment, will say, you know, there is this huge labor saving component if you put this in your facility.

And generally I think it falls into two categories. One is that you’ll have an absolute reduction in FTEs and you’ll actually save salary or take the costs off the bottom line. The other is, you may not be able to actually reduce FTEs, but you’ll be able to divert people from administrative tasks to more productive clinical tasks within your labor pool. And both which are presumably quantifiable from an FTE point of view.

Have you had either one of those experiences and quantified it in any way?

MS. LIBERLIES: Yes, actually, we’ve always had a very good size support staff in which we have been able to eliminate two positions with the use of both LMR and the Gateway. So yes, that’s occurred.

DR. VIGILANTE: Any impact on your nursing staff in terms of time allocated, measurable time allocated to clinical functions as opposed to being on the phone or administrative functions?

MS. LIBERLIES: Absolutely. It’s very helpful.

DR. VIGILANTE: It’s measured? And have you quantified it in any way?

MS. LIBERLIES: Not to satisfaction.

DR. VIGILANTE: The other question I had was for Dr. Agarwal and maybe Kathleen and maybe Phil also. I think the idea that folks who use personal health records, there may be some correlation with the types of insurance products they choose either because of pre-selective forces operating or because it actually influences them? In other words, are folks who choose HSAs and other consumer driven health care products more or less likely to use PHRs? Is there some correlation that’s anybody’s aware of? It would be an interesting one if looked at.

DR. AGARWAL: I do not have any data on that, but what I do have data on is what’s on one of the slides in your packet, and that is, to what extent is the doctor’s adoption of electronic medical records or the hospital’s adoption of electronic medical records driving your choice to go to that doctor or hospital? And that’s the only data I have at this point.

DR. MARSHALL: I certainly think that one can expect, although I also don’t have any data to show this, that consumers engaged in managing their information and making sure that it’s up to date and accurate would be probably to a great extent overlapping with the population that would choose to take on a health savings account and have that drive their reimbursement. So one might expect that. I think it’s a fascinating question.

DR. VIGILANTE: You talked about ways of using this information to project your future utilization, you know, sort of in a high deductible plan or in a cafeteria type. Are there other creative ways in which you can imagine how the use of a personal health record would enhance the cost saving potential or the efficiencies of, say, an HSA?

DR. MARSHALL: Yes, I think that there are opportunities for a personal health record to help a participant in a health savings account.

First, you can use a personal health record in the data that’s coming back in from the claims process to be able to aggregate that information, give insight into cost to date, and to be able to weight that against the amount of contribution in order to identify the amount of financial out-of-pocket risk that the person might bear later on in the year.

Second, in leveraging a profile, you might personalize information to the user about opportunities to lower costs, be it drugs spent, et cetera, and that has a potential for lowering the HSA contribution as well.

So I think there a number of overlaps, and in fact we remain very excited about the intersection of the personal profile and the modeling and management of a person’s benefit.

MS. KRANTZ: I would just like to add that without the personal health record or personal profile, the consumer does not have any way of knowing the management piece of what’s best for him if he’s forced into having an HSA or an HRA, so this would be another solution, another tool, for them.

DR. COHN: Okay. I think we could keep going for another couple of hours, but we’re not going to be able to.

Obviously, I want to thank the panel for what’s been a really fascinating set of discussions. I still feel even at this point like we’re still struggling with – well, if you remember, yesterday we were all observing that nobody talks about these things the same way. Today, we’ve all been talking about personal health records, and obviously there’s many different flavors that we’ve seen expressed in this panel. So, once again, it’s something for us to think about.

But I think we all want to thank you for really what’s been a very illuminating set of discussions. So, thank you.

AGENDA ITEM: Committee Workgroup Discussion

DR. COHN: Now, with that, we have about 20 minutes or so to, I think, talk about next steps. John, are you on the line?

DR. LUMPKIN: I still am, yes.

DR. COHN: Good – okay. I guess I would ask you if you want to lead off with any thoughts you have, views. Obviously, having listened to a day and a half’s worth of testimony on personal health records, your view of sort of where we are and sort of next steps for the Workgroup.

DR. LUMPKIN: Well, yes, I think that there are two things that we may want to look at – well, actually, three. One may be a shorter term and two, longer term.

The first is that there appears to be a lot of activity going on, which we suspected. Some of that’s related to those that are tethered and untethered personal health records, although maybe that “tethered” may not be the right word; it’s a question of who they’re tethered to, either the patient or the provider health plan kind of systems.

But from both systems we’ve heard the issue related to how does the data get in there – as automation proceeds, the issue of data standards. And we may want to take a look at that.

The second area in sort of intermediate range is looking at the whole issue of research: What is it that we still feel that we need to know that we could recommend to the Department as part of our research agenda that we’ve been discussing on all the Workgroups and Subcommittees.

And then, finally, on the long term, it seems to me that we need to better understand patient and provider factors. I think that we got some good insight into patients, although I’m still concerned that we’ve only heard from those who are already early adopters. And we still have struggled trying to get some consumer advocacy organizations before us. So I think as we look at our agenda, I would certainly add providers, perhaps some more from business, as well patient representatives.

DR. COHN: Okay, so I think what I’m hearing from

you certainly is a feeling that we need to investigate the field more before we try to frame the issues and come to any conclusions?

Now I see John Paul had his hand up, and Jeff also, for comments. Please.

MR. HOUSTON: One thing I think that is important is – it came up in this last panel – the issue of quantification. I really feel strongly that the way to make this proceed and gain momentum is if we can come up with some quantifiable impacts, whether it be on the cost of insurance products such as in the case of the GOP or in the case of if there’s a value to the consumer that’s quantifiable.

And again, I think it sounds like we have the basis; there is the basis out there for getting that information together. It’s just a matter of doing more work.

DR. COHN: Well said. Jeff?

MR. BLAIR: These two days altered my views in a lot of ways. And it’s almost like I went back to 1994 when people first discussed the Internet, and I looked at it from my background, which was to say, okay, it’s another network and it’s many-to-many and it’ll have more access to people. But I still was looking at it from the viewpoint of the folks that controlled the information at the time, back in ’94. And I still looked at it in terms of serving the folks – the corporations, the hospitals, the doctors, whatever. Okay?

I guess I heard a rumble in the last two days. And the rumble was a major paradigm shift. And it’s too much for me to actually digest all at the end of one time.

But there’s little things that people have said from time to time – Dr. Agarwal said it, the person from WebMD said it, I think we heard personal testimony from users that gave me a feeling for this.

And the paradigm shift is that we may be looking at not just driving the national health information infrastructure from the viewpoint of providers – that, of course, has been sort of my focus for a long time, and then from public health, which also needs the data, and that up until now I looked upon the fact that, oh, we’re going to accommodate the patient, we’re going to empower the patient. We are going to empower the patient, but it was always in terms of “we.”

And now I heard something different. What I’ve heard is the beginnings of the fact that the patient may begin to demand, and the patient may wind up being one of the major drivers of this change. ]

And that starts to change a lot of things in terms of the way I start to look at the national health information infrastructure. I don’t have all the pieces; it’s not all clear. A paradigm shift is something that is hard to digest all in two days.

But it means, for example, one of the things, the views that I had up to this point, is that the personal health record contact will probably be a derivative of the electronic health record. In some situations, in some ways, that would be true, but I think we cannot take that as a given any longer.

The other pieces of it are that the privacy issues that we’ve looked at up until now have to be looked at from a different perspective, and then the other piece is that the drivers for interoperability may also shift with this paradigm shift.

So those are the observations, so that as we begin to have the next steps that John mentioned, I think we have to make an effort to work at least a broader perspective. I don’t know that we’re ready to wind up being able to conceptualize the paradigm shift quite yet; I know I can’t make a full shift yet. But I think we have to allow for the fact that we may be facing a paradigm shift.

DR. COHN: Gene, you had a comment?

DR. STEUERLE: What I keep struggling with is where our Committee is going to make value added in this process.

It seems to me that there is a market developing. I think part of Jeff’s comments just a second ago is a sort of a reaction to how consumers in many ways are perhaps driving this market. I’m not saying there aren’t people that aren’t advertising to them to get them there, but there’s parts of this market that are being driven there.

It looked from a lot of the testimony that we had that it’s being driven, as we might expect, by efforts at getting at the low-hanging fruit – you know, being able to get your prescriptions refilled, doing simple types of emails, perhaps not in the sense of correspondence back and forth. Scheduling seemed to be a gain for everybody.

But by the same token, if that drives the market, or drives part of the market, that may create powerful incentives within the medical offices to actually at least get up some sort of more computer-aged equipment even to meet those low demands, which means that that may actually give them a demand to get the software in house to do a lot of other things that go all the way through to electronic health records.

I don’t know where that takes me, but I see a lot going on out there. I’m not sure where our Committee adds value to that other than being a convener.

Where I do see tensions – at least, when I saw where there were obstacles, which is maybe where the government gets into play, and again I’m not sure how we play out, is one was on the privacy front. And I know we have a committee on privacy.

I’ve expressed this before to this Subcommittee, our group or workgroup, whatever we call it, that my concern on the privacy front is that most of the attention is given to what I will call, and I’m probably misusing these terms, but I’m going to call the Type 1 Error – the problem of somebody’s privacy being violated and how can we protect it in that there’s not enough attention given to what I’m going to call the Type 2 Error, which is that the privacy concerns are really blocking, that there are really losses.

So, I mean, if there’s research here, I’m not so sure we shouldn’t have a lot more research, encourage a lot more research on what’s not being done because feel the privacy concerns are blocking them from being able to do things.

The second area that I heard where there is attention which might be preventing this market from developing had to do with the threat of liability, and I’m not quite sure – again, I haven’t thought this out well enough, either, but I’m wondering if there’s not some way we need to perhaps address that issue in a little different way, too.

I mean, for instance – and I’m thinking of a possible opportunity; you know, there’s liable to be major momentum in Congress to change tort law this year. There’s certainly a lot of momentum in the states now. Is there some tiny piece of this that we should be holding hearings on, on the extent to which tort law itself is going to be affected by development of records? Is there some little piece of additional protection there? I don’t know. I’m not a legal expert in that sense.

But is there something we should be examining with respect to this liability issue where there is a government function to be considered? I’m not saying we would propose change to the law, but since we are a convener, do we need to gather some information there?

So I haven’t sorted this out. As I said, I did identify those two areas as barriers – privacy and liability as being two major barriers to fuller development not just of EHRs but PHRs – and I’m just curious whether that’s areas we ought to think about orienting our efforts.

MR. KAMBIC: Can I follow up because I actually have done some work on that? Bill Follow asked me to look at if there could be any impact on malpractice premiums for physicians that use EHRs, and actually I did some literature searches and we have a couple of people discussing this issue now, which is intriguing.

The conceptual model is rather complex because it goes from identifying the error and then insuring that the error doesn’t happen and then insuring that the claim doesn’t happen and then actually will the insurer reduce premiums if in fact there are reduced claims, given other market pressures and legal pressures and so on. But I think it’s an interesting question.

But if you don’t mind, I also wanted to comment –

DR. STEUERLE: But the subset of that question was: What role can we play versus what might also be going on in the Department or in David Broiler’s office and how can we –

MR. KAMBIC: Well, to follow up, the question of research for me, I mean, when I was working with Dr. Castoff, I did some Internet and ELM searches and came up with about 30 both peer review and non-peer review documents, and there’s non-existent research.

Following up on what Dr. Vigilante said, people will say, oh, this is great; we were able to eliminate two or three coders, but without accounting for the cost of the IT and the support. And as IT gets more and more complex, we’re going to have to have people that cost more than the coders running it to insure in fact that we don’t have more disastrous medical errors.

So we need scientists. We can’t just go out – and what John said, he said the data is there. Well, you just

can’t have hospitals and other folks that don’t know what they’re doing about research, you know, grab some numbers and say, look at this, this is great. It’s not acceptable from a research perspective.

And the problem is that this is going to continue to snowball and the research outcomes really aren’t going to be reported for several years.

So I don’t know what the solution to that problem is, but one of the solutions is we need to start funding that type of research now so that actually we have answers in the shorter run rather than in the longer run because if we don’t know where we’re going, we’re certainly going to get there; everybody’s going to have their own PHR and these things aren’t going to be interoperable and so on.

So we need good research from folks like Agarwal, and I’m sure that there are others there; I mean, we all know them. So one of the things I think we can do is suggest that they begin to fund such people.

DR. COHN: Okay. Now I see Cynthia had a comment. Did you have a comment, or question?

DR. BAUR: A comment, to follow up on Jeff.

DR. COHN: Okay, and we need to then begin to wrap up and talk about the next steps for the Committee, so hopefully it’s on that topic, right?

DR. BAUR: Yes.

DR. COHN: Good.

DR. BAUR: And I promise I will try and say this as clearly as possible because I know that I often come at these issues from very different perspectives from many members of the Committee. But I think that I really want to applaud Jeff for saying what he said because I think he’s definitely on to something.

I think what I’m trying to reflect what I’ve heard over the last couple of days and what some of the choices might be would be that there’s a lot of interest among the Committee about continuing to focus on the components or building blocks, the infrastructure kinds of questions, the things that will make this eventually happen.

But I think what Jeff is pointing to, and which would be, I think, a substantially valuable but a substantial break for what government usually does, would be for the Committee to take on the role of encouraging the Department to be far more proactive in this area and to anticipate some of the trends that are coming, and for example, anticipate what that financial breakpoint might be for individuals to actually create the demand that could happen.

And the reason I say that is because we typically underestimate the impact of technology when people get to use it in the ways that they want to use it.

And I say that because on the way in this morning,

I heard about the ways in which people are downloading songs, creating personal playlists, trading them, using them to drive what’s going on in after-hours clubs – I mean, there’s like this whole vibrancy going on that people in the music industry didn’t anticipate.

But what happened was is that the financial underpinnings changed to the point where the music industry couldn’t resist anymore and now they’re having to sell songs for 99 cents apiece.

So I think that there are some things that we could begin to think about to anticipate when is the financial burden going to get great enough for consumers that that vibrancy will actually happen? And that requires anticipating trends, being proactive, thinking about how the market will actually change, to begin to break apart the system as we know it.

So I tried to be clear. I don’t know if I was.

DR. COHN: Yes, I think you were clear. I guess I would ask – and this is actually I think an issue for both John and Mary Jo and others – I mean, clearly we don’t have answers. But I think we’ve obviously heard a lot of information.

I mean, what do people want to do as next steps for the Workgroup? I mean, obviously the next full meeting of the Committee is in March. I’m sure we have an hour, or even if we don’t say anything, we have an hour. What beyond that does the Workgroup want to do in terms of next steps around all of this? John Paul?

MR. HOUSTON: One strategy I think which we’ve already started to use is to look at the other Subcommittees, such as Privacy, to assist on the privacy issues related to this topic. And I think that will be successful.

So I think that the question is, the first thing is to decide, what are the topics? But also, can the other Subcommittees be of assistance in investigating them rather than in assuming that this Workgroup has to take on all that responsibility, because I think it could be overwhelming at least within the time frames I think that’s needed.

MR. BLAIR: A suggestion?

DR. COHN: Jeff, did you have a suggestion?

MR. BLAIR: Yes, and I want to build on kind of maybe what Mary Jo has already started. I mean, she pulled together a lot of the testifiers for these last two days, and thank you. It really opened up my eyes in a lot of ways.

MS. DEERING: The staff played a big role.

MR. BLAIR: The staff – and could you name the

staff that helped, that worked with you?

MS. DEERING: Well, I’ll give everyone credit, but certainly Michelle and Steve and Eduardo and Linda Fischetti. And Bob – I’m sorry; that’s why I didn’t want to –

MR. BLAIR: Here’s my scope. Here’s my suggestion for next steps. I’m sorry – here’s my suggestions for next steps, is to drill down a little bit deeper, especially in the areas where we have examples of consumer driven us of PHRs. By that, I mean the vendors and users, maybe some of the users of the systems that are not using information necessarily derived or extended from the provider community.

This is not to say that the provider community is not going to facilitate, enable and provide information, but I think we understand that a little better.

The areas where I think it’s more difficult for us to grasp is the part that’s going from the grassroots up, and I think maybe you’ve had a number of testifiers that have kind of already told us about that, and maybe we could see if we could ask some of their users and drive down in that area because that’s the area I think we understand the least.

This is not to be exclusive; I don’t want to do it all one way because this is multi-faceted. It’s just for us to really concentrate on understanding the grassroots growing from the patient driven interest upward.

DR. COHN: Yes. I think I do want to add myself that once again the taxonomy – we still need a taxonomy to explain all of this stuff, about tethered and untethered.

But we were hearing today, at least one example was a tethering that is a tethering to a health plan as opposed to a provider. And that’s another sort of tethering. And that’s basically not untethered. I mean, basically we have claims data coming from the provider to a health plan now then being translated and sent back to a patient. That’s just another sort of tethering. But I think it really brings up the issues that we really probably need to be hearing from health plans and other groups that are sort of looking in that area.

I mean, we heard about a vendor who had developed a product, but we really haven’t heard much from the organizations that are seeing a business case that is driving them to invest in that product, which I think is an area where Gene I’m sure would be interested in looking at.

And once again, I just want to reference that really is not an untethered; it’s just another sort of tethering. So I think it’s an area that really would be useful.

I’m still sort of looking for things that are sort of grassroot, but I will certainly let the staff help us with that.

MR. BLAIR: And maybe we could get AARP, other consumer advocacy groups, to start to look at this a little more and also share their thoughts.

DR. COHN: Okay. And I guess I would ask everyone – I mean, we can certainly talk about this at executive subcommittee about how to divide up the work though I do think that most of the other Subcommittees are pretty occupied at this point, so I don’t think one can give away too much.

MR. HOUSTON: I’m just worrying about priorities – I mean, it sounds like this is a priority overall. I mean, it is a priority and I think the privacy group sort of put that one as saying this is something that needs to be done quickly; there’s expertise we can bring to bear on it. And I’m just thinking that –

DR. COHN: We ought to defer, give back to them, and sort of see what they can do with it.

MR. HOUSTON: That would be my suggestion. The executive committee may –

MS. DEERING: I just wanted to note that Kathleen has been working very hard to try and get some of these issues onto the agenda for the February and March hearing, and one of the things that came up was, given this interest in these more untethered approaches, would it be valuable to have a panel of speakers from the untethered PHRs and the users about their consent authorization, authentication, privacy, security procedures and practices to see that if in these reported instances of “patient control,” what exactly is happening? That was how I sort of pinged Phil Marshall of that. So it might be that perhaps Kathleen would consider it or if the Committee thought that was something to recommend.

DR. COHN: Mary Jo, can you help me? Did you consider the WebMD to be untethered? Is that a example of consumer control? I mean, I just don’t know.

MS. DEERING: You are quite right. The defining feature would be those that claim consumer patient control regardless of whether they’re tethered or untethered.

MR. HOUSTON: Can I say that I think the security issue, those issues, are more of an issue where you have a tethered.

DR. COHN: Yes.

MR. HOUSTON: I think if it’s truly untethered, I think those are less of an issue.

MS. DEERING: We could work to perhaps flesh out what needs to be explored in those two areas.

DR. COHN: Yes.

MS. FYFFE: It’s a possibility. You have to check tomorrow.

DR. COHN: Now, am I missing something? Or I’m hearing that probably we’re all talking about scheduling another probably day-and-a-half session around this area? Is that so? John Paul, you were making a comment that we couldn’t hear over the microphone.

MR. HOUSTON: I prefer not to say it.

DR. COHN: Okay. John Lumpkin, is that what your thoughts are, too?

[No response.]

DR. COHN: Well, maybe Kevin will ask you –

DR. VIGILANTE: You know, I would like to hear in a lot more detail the results from the study that Eduardo has done. I mean, you have a patient base of a hundred and – how many people regarding PHRs utilization?

DR. ORTIZ: 117,000.

DR. VIGILANTE: 117,000, and he’s analyzed the data in a variety of very interesting ways, and can presumably do it in other ways, and it’s going to be coming out when?

DR. ORTIZ: March, April, probably.

DR. VIGILANTE: March, April. I mean, it would seem to me that our quest for data in a data sparse environment, learning more about that. And you had what, a 15 percent utilization rate?

DR. ORTIZ: Well, it’s interesting. We’ve got

117,000 users, which represents 3.4 percent of all members, which is very small but yet represents about – I haven’t looked exactly, but about 35 percent of users that had access. So we kind of looked at it in terms of overall users, then also stratified in the people who had access. But we looked at all sorts of variables.

So I think if you guys are interested, we could invite John Shu(?) to come do that, if you would like me to do me to do it, since I’m already here, but I would ask him first since he is the lead author on the study.

DR. COHN: Okay. That would be fine.

MR. HOUSTON: Can I make a suggestion? It might be interested to also have Dr. Agarwal go into more depth, and she also indicated in that same time frame she had expected to have more detailed data. I mean, she really didn’t have a lot of time to drill down into the real, meaty –

DR. COHN: Oh, and she has some data, sounds like, coming out.

MR. KAMBIC: I have some economists up at Dartmouth that could address some of the questions we were discussing.

MS. FYFFE: April?

DR. COHN: April? Okay. That sounds good.

MS. FYFFE: Target after our taxes are due.

DR. COHN: Okay. We have a call for after tax season for the next Subcommittee.

MS. DEERING: Dr. Lumpkin sent me a message; he is trying to get back on. He was cut off the line.

DR. COHN: Dr. Lumpkin, do you have any great comments? Are you back on the line?

MS. DEERING: He’s trying.

DR. COHN: He’s trying – okay. Well, we may adjourn by the time he’s done.

DR. COHN: We have a Web check.

MR. HOUSTON: He’s untethered at the moment.

DR. COHN: He’s untethered at the moment. You know, I will apologize, but your Acting Chair is going to have to finish up here in the next minute or two, so –

DR. LUMPKIN: Simon?

DR. COHN: Yes – good morning, John.

DR. LUMPKIN: Good morning. The battery in my portable phone died, so I switched phones.

DR. STEUERLE: John, are you going to be able to finish the report we asked of you next week or the week after? I think 10 pages would be fine.

DR. LUMPKIN: I think what I was trying to say is that yes, we have been thinking about a day-and-a-half hearing even before we started this one, initially.

DR. COHN: And I think Kathleen was sort of proposing — probably sometime late April, after tax season, was her suggestion, which I think all of us were sort of nodding our head.

I think the other piece is obviously so that we can take a look at some of this work and see what is more appropriately handled by other subcommittees and all that at the executive subcommittee conference call later on in the month.

DR. LUMPKIN: I agree.

DR. COHN: And that’s yet another action.

MS. DEERING: I was wondering whether there are two people on the staff who have shown particular interest in the research side of things, and that’s Eduardo and Bob, and I’m wondering if those two, and anyone else who cares to join them, would like to take a stab just to begin to draft a list of a research agenda in this area. We talked about this for years. It’s long overdue.

So I thought the two of you – you already know the questions; just start putting it together and staff will chew on it for a little while and then we’ll start circulating it on you.

And the other thing is I think some of us do want to push to see if there isn’t a way to get this draft taxonomy circulated. I think there’s enough people who are interested in that. There’s enough work that’s gone down the pike that it shouldn’t take too much to get that pushed into a real downhill motion.

DR. COHN: Oh, that would be great if we could see a draft or something like that for the next meeting because it would be nice to be able to talk in a common language.

MS. DEERING: So we gave ourselves two of those deliverables also pre-April.

DR. COHN: Yes, great. Gene, last comment.

DR. STEUERLE: I’ll make it very quick. Whether it’s this small research group or the broader group, I still hope that as we make decisions that we have some idea – I mean, some of the stuff I really find fascinating, but I’d like to have some idea that when we do it, it’s something where we can add value added, whether it’s identifying research that should be done or decisions or laws should be made.

In that respect, there were two groups that we haven’t really heard a lot from that I don’t know how they fit in the agenda and I don’t ask anybody to respond to this, but I’d like the executive committee at least to think about it. One of them is I think I really would like to actually hear from some lawyers on how this stuff plays out. I mean, John excepted; I hear plenty from him, but –

MR. KAMBIC: Can I pick up on that, Gene, because the American Health Administrators are going to be taking this topic up, right, looking at the legal aspects of the

PHR? The gentleman in the back; I think you’re from HEMA, right? One of you guys is. I know I read that on a list a couple of months ago –

MS. FYFFE: Is that right?

PARTICIPANT: What’s the question?

MR. KAMBIC: You’re going to be addressing the issue of legal perspectives on EHRs and especially on PHRs, the aspect of ownership.

PARTICIPANT: We have a task group looking at that now.

MR. KAMBIC: Yes, a task force looking at that right now.

DR. STEUERLE: The other one – I wasn’t asking for a response. The other one was I would love to have a discussion with CMS about what might be good there in terms of demands for personal health records and even – there’s some stuff they could say and they couldn’t say, but the largest health plan in the country was not at the table today, so I think that would be a worthwhile discussion.

DR. COHN: Oh, great. I appreciate that.

Now, as I said, in my attempt to sort of wrap up, I realize that there are still people who have suggestions and obviously I would suggest that you share them with Mary Jo for the next session, so we would appreciate that.

Now, one thing to do before we adjourn the meeting, and I think as we remember, in November, we acknowledged Jackie Adler for her many years of service and her contributions to the full Committee, and we really appreciate it.

Now, the sad story of course is that really today is her last set of formal activities for the full Committee and in this case for the Workgroup, so we really want to thank you.

[Applause.]

DR. COHN: We were going to do this earlier, but you kept leaving the room, so we actually have a card and a little gift for you. Why don’t you come right up here and we’ll give this to you. And we are going to miss you very much.

MS. ADLER: I’m going to miss you guys, too.

[Applause.]

DR. COHN: John, do you want to make any comments on that also?

DR. LUMPKIN: Well, I was applauding on this end, and I’m almost speechless in trying to convey how much we’ll miss her. And Miss Jackie, you’ve really helped this Committee through an important time of transformation and best of luck in retirement.

[Applause.]

DR. COHN: Now, I want to thank the Workgroup for allowing me to at least facilitate John in chairing this last day and a half. Unruly, but, I mean, a good group, fundamentally.

And I think it’s been a very interesting session. I think we’ve all learned a lot. So, thank you.

The meeting is adjourned, and talk to you soon.

John, thank you.

DR. LUMPKIN: Thank you, Simon. Great job, and we’ll see everybody soon.

[The meeting adjourned at 12:15 p.m.}