Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

June 16-17, 2010

Crystal City Sheraton Hotel

Crystal City, VA

Meeting Minutes

The National Committee on Vital and Health Statistics was convened on June 16-17, 2010

at the Crystal City Sheraton Hotel in Crystal City, VA. The meeting was open to the public. Present:

Committee members

Harry Reynolds, Chair (outgoing)

Justine M.Carr, M.D. (incoming Chair)

Leslie Pickering Francis, J.D., Ph.D.

Larry A. Green, M.D.

Mark Hornbrook, Ph.D.

John P. Houston, J.D.

Garland Land, M.P.H.

Sallie Milam, J.D.

J. Marc Overhage, M.D., Ph.D.

William J. Scanlon, Ph.D.

Donald M. Steinwachs, Ph.D.

Walter Suarez, M.D.

Judith Warren, Ph.D., R.N.

Absent:

Blackford Middleton, M.D.

Paul Tang, M.D.

 

Lead Staff and Liaisons

Marjorie S. Greenberg, NCHS, Exec. Secretary

James Scanlon, ASPE, Exec. Staff Director

J. Michael Fitzmaurice, AHRQ liaison

Charles Friedman, Ph.D., ONC liaison

 

Others

Debbie Jackson, NCHS

Katherine Jones, NCHS

Marietta Squire, NCHS

Frank Kyle, ADA

Michael DeCarlo, BlueCross BlueShield

Cynthia Leonhard, AHIMA

Dan Rode, AHIMA

Thomas Bizarro, First DataBank

Jeffrey Blair, M.B.A., Lovelace Clinic Foundation (newly retired member)

Ron Blankenbaker, M.D. (former NCVHS Chair)

Simon Cohn, M.D., Kaiser Permanente (former NCVHS Chair)

Note: The transcript of this meeting and speakers’ slides are posted on the NCVHS Web site, http://ncvhs.roseliassociates.com. Use the meeting date to locate them. For final versions of NCVHS documents discussed in the meeting, see “Reports and Recommendations.”

 

EXECUTIVE SUMMARY

This is the first full Committee meeting in 2010, the scheduled February meeting having been cancelled due to a blizzard. This regular meeting was immediately followed by a special symposium and reception in honor of the Committee’s 60th anniversary. That event, held at the National Academy of Sciences in Washington, DC, is summarized in a separate document. The Committee’s plans for the future were a focus of both this NCVHS meeting and the symposium.

Department Update: Mr. Scanlon

 

Mr. Scanlon’s briefing covered the Secretary’s priorities and strategic initiatives and the HHS open government plan. He announced that Todd Park has been appointed as the HHS Chief Technology Officer.

The Secretary’s nine priorities are broad areas that will receive special attention while HHS also continues its ongoing programs and responsibilities. HHS will soon post its strategic plan for the next five years, with a request for public comment. The President has asked all federal agencies to be more open and transparent and to foster collaboration in their work. In addition, open government involves making data available more broadly. By the end of the year, HHS will have posted about 150 data sets. Mr. Scanlon briefly discussed the Department’s flagship initiatives, including the community health data initiative, reported on more fully by Dr. Bilheimer (below).

 

NCVHS members asked questions and offered comments about the “foster innovation” component of the open government initiative.

CMS Update: Ms. Trudel

CMS recently completed an internal realignment in order to better address the challenges of health care reform. The new Center for Program Integrity combines all programs in that area for Medicare and Medicaid, and there is a new Center for Strategic Planning. On meaningful use, the comment period for the proposed rule ended in March, and CMS is now reviewing the 2,000 comments received. It will probably have additional vendor conferences on ICD-10 and 5010 implementation and is signing people up for listservs, and it has a new website, cms.gov/icd-10.

Related to administrative simplification provisions in the Affordable Care Act, CMS is doing thorough listening and outreach before issuing interim final rules. The NCVHS Subcommittee on Standards will hold a hearing July 19-21 covering the plan ID, operating rules, and related topics. All subcommittees are asked to send representatives.


ONC Update: Dr. Friedman (slides)

Dr. Friedman’s presentation focused on research, workforce, and what he calls “Element 3.” ONC has funded 60 regional extension centers using HITECH funds. Two “transcendent programs” are SHARP (Strategic Health [IT] Advanced Research Projects) and the Beacon Community program, the latter involving cooperative agreements with 15 communities. SHARP is funding four sites for four-year breakthrough research. Dr. Friedman stressed the importance, as well, of ONC’s workforce activities, and described several.

To introduce the concept of Element 3 (“E3”), he noted that adopted health IT systems and trusted pathways to information exchange are incomplete in creating meaningful use without a third element: “those components of an infrastructure, including technology and policy, that are necessary above and beyond meaningful use to support public health and research and to create a learning health care system.” ONC has set as its highest-level goal the creation by 2015 of “a federated, integrated learning system for health care quality improvement and population health.”

NCVHS members and staff received Dr. Friedman’s E3 report with enthusiasm, noting its resonance with core NCVHS priorities and the Committee’s interest in contributing to this developmental effort. Ms. Greenberg cited the new NCVHS concept paper, “Toward Enhanced Information Capacities for Health.” Dr. Friedman said he would relay the Committee’s interest to the IOM planning committee. Mr. Reynolds cautioned against creating an environment that requires people to “chase the committee” in lieu of clarity about who is doing what and how communication will take place.

Recognition of Outgoing Members; Announcement of New NCVHS Chair

In recognition of the service of Mr. Reynolds and Mr. Blair, who are completing their service on NCVHS, letters and certificates of appreciation from the Secretary and NCHS were read. Mr. Scanlon announced that Dr. Carr has accepted the Secretary’s appointment to be the next NCVHS Chair.

Plans for the NCVHS 60th Anniversary Symposium

Ms. Greenberg and NCVHS members began by acknowledging the staff members and others who worked on the anniversary symposium and its documents and videos. She then briefed the group on the plans for the forthcoming symposium and reception.

Community Health Data Initiative; Health Indicators Warehouse

Dr. Linda Bilheimer, NCHS (slides)

The Community Health Data Initiative (CHDI) is one of the five flagship initiatives of the HHS open government plan. It is designed to promote the dissemination of national-, state- and community-level data for use in developing applications to promote population health at all levels, and also to promote feedback to HHS about community-level health issues. The content will be a wide range of health indicator data in a user friendly form, for a wide variety of end-users (patients, consumers, providers, community leaders, policy-makers, businesses, researchers, et al.). One objective is to encourage the development of innovative applications and their use to create awareness in communities about local health status.

The data come from a variety of sources. The main HHS contribution is the Health Indicators Warehouse, which provides health indicator data for a wide range of users and is being developed to be the HHS hub for the CHDI, ready by December 2010. An interim, basic website with downloadable datasets is already up and running, ahead of schedule. Healthy People 2020 baselines and indicators will be posted by December. NCHS will continue to develop the Health Indicators Warehouse to provide pre-constructed national, state, and local-level indicators (no individual-level data) to support multiple functionalities along with supporting metadata. It also is working to secure the funding streams to maintain the Warehouse, and developing a process for selecting new indicators and updating and improving existing ones.

NCVHS members commented and asked questions about a range of subjects, including privacy issues, other potential data sources and programs with which to collaborate, and the need to develop expertise for the type of thinking and data use the CHDI facilitates and requires.

Subcommittee Report-Outs

(Please see the brief summaries, below.)

DETAILED SUMMARY

DAY ONE

This is the first full Committee meeting in 2010, the scheduled February meeting having been cancelled due to a blizzard. This regular meeting was immediately followed by a special symposium and reception in honor of the Committee’s 60th anniversary. That event, held at the National Academy of Sciences in Washington, DC, is summarized in a separate document.

Call to Order, Welcome, Introductions, Agenda Review

 

Following introductions, Mr. Reynolds reviewed the agenda, noting that the Committee’s plans for the future would be a focus of both this NCVHS meeting and the symposium. He thanked members and staff for their work on the concept paper that will be presented at the symposium.

Department Update: Mr. Scanlon

 

Mr. Scanlon announced that Todd Park has been appointed as the HHS Chief Technology Officer, responsible for thinking about how HHS can use technology in its internal operations and to interact with HHS stakeholders. He said his report would cover the Secretary’s priorities and strategic initiatives and the HHS open government plan.

The Secretary has announced nine priorities, virtually all of which involve data and all of which relate to a strategic initiative. The priorities include transforming health care, implementing the Recovery Act, promoting early childhood health and development, helping Americans achieve and maintain a healthy weight, reducing tobacco use, maintaining public safety in public health emergencies, accelerating scientific discoveries and their translation into health care, improving food safety, and ensuring program integrity and stewardship. These priorities represent “leverage areas” and are carried out in addition to other HHS programs and responsibilities. There also are key interagency collaborations, including ones to reduce teen pregnancy and unintended pregnancy, support the national HIV/AIDS strategy, improve global health, and foster open government. HHS is nearly ready to post its strategic plan for the next five years, with a request for public comment.

Regarding the open government plan and transparency initiative, Mr. Scanlon noted that the President asked all federal agencies to be more open and transparent and to foster collaboration in their work. Open government also involves making data available more broadly. HHS, which he described as “cautious,” has posted 114 data sets or tools and will post another 30-40 by the end of the year.

One of the Department’s flagship initiatives is on community health data (see Dr. Bilheimer’s presentation, below), which is making data available on a website and encouraging its use and the development of applications to increase understanding of community health. There are two collaborations with IOM to get things moving. The Department welcomes input from NCVHS on this initiative. CMS has made available a beta version of a Medicare dashboard with claims and cost data on hospital discharges. The goal is to make a five-percent national sample available, in a manner that protects privacy.

Finally, the Department is now working on the 2011 and 2012 budgets. Congress is looking at a 17 percent increase for NCHS in 2011, with increases slated for the vital statistics infrastructure in the short run.

Members asked Mr. Scanlon a number of questions about the “foster innovation” component of the open government initiative. HHS will be looking at how to use software technology, primarily, to encourage innovation through better idea-sharing and communication, and at the uses of social media to get more public input. Dr. Carr asked about the possibility of using the innovation center to supplement the ways of obtaining population health information. Mr. Scanlon commented on the balance between using social media for qualitative data and social science for other purposes. He noted that these activities are separate from HITECH.

CMS Update: Ms. Trudel

CMS recently completed an internal realignment in order to better address the challenges of health care reform. The new Center for Program Integrity combines all programs in that area for both Medicare and Medicaid, and there is a new Center for Strategic Planning.

On meaningful use, the comment period for the proposed rule ended in March, and CMS is now reviewing the 2,000 comments received. One strong theme is that the requirements are very challenging and more flexibility is needed, while others urged not diluting the requirements, in view of the amount of money at stake; so a balance must be struck.

On ICD-10 and 5010 implementation, CMS had a successful vendor conference in the Spring, where it got a lot of good feedback. It will probably have additional such conferences, is signing people up for listservs, and has a new website, cms.gov/icd-10.

On the Affordable Care Act (ACA), Ms. Trudel focused on the administrative simplification provisions. Because they will be introduced by interim final rules, CMS is doing thorough outreach and listening. The NCVHS Subcommittee on Standards will hold a hearing July 19-21 covering the plan ID, operating rules, and related topics. Another ACA provision is to make the ICD-10 GEM tables part of the code-set standards and to require a public meeting on crosswalks by the end of 2010. CMS will begin to obtain input from industry at the ICD-9-CM Coordination and Maintenance Committee meeting in September. Dr. Warren asked that each NCVHS Subcommittee send a representative to the July hearing.

Mr. Reynolds characterized this busy state of affairs, which has many integrated subjects, as a relay race that is also becoming a sack race. He urged each Subcommittee to have more than one member familiar with these issues.

ONC Update: Dr. Friedman (slides)

Dr. Friedman’s presentation focused on research, workforce, and what he calls “Element 3.” He stressed that ONC, CMS and other federal agencies and advisory bodies are engaged in an ongoing developmental process; he noted the long way there is to go to achieve physician EHR adoption targets, despite the progress.

ONC has now funded 60 regional extension centers, using around $600 million of the two billion dollar HITECH appropriation; and it has awarded grants to 56 states and territories to help advance a national program supporting health information exchange. This work links to the work on a comprehensive standards and certification framework and a privacy and security framework. Two “transcendent programs” are SHARP (Strategic Health [IT] Advanced Research Projects) and the Beacon Community program, which involves 15 cooperative agreements to communities to demonstrate meaningful use of health IT and supporting activities.

NCVHS members talked with Dr. Friedman about the complexity of standardization and certification in these arenas, the timeline for the privacy and security framework, and concerns about the clinical usability of EHRs. Dr. Friedman said ONC is “moving things along in parallel.”

On workforce activities, he emphasized that this dimension can be overlooked but is critical. ONC started implementing the HITECH workforce program by identifying 12 key workforce roles that would be underpopulated in the absence of increased national training capacity some requiring 6 months of training, and others 1-2 years; and it created four integrated workforce development programs, funded in April, including five community college consortia in five regions. Dr. Hornbrook noted the importance of also training champions inside the current medical care system.

In the SHARP program, four sites have been awarded $15 million each in funding for four-year breakthrough research in a specific area patient-centered cognitive support, security, secondary use, or advanced platforms to support the more sophisticated aspects of meaningful use that are anticipated. Dr. Friedman agreed with Dr. Scanlon that it would be ideal if many more approaches to secondary use could receive funding in the future, in view of its multifaceted nature.

To introduce the concept of Element 3 (“E3”), Dr. Friedman noted that adopted health IT systems and trusted pathways to information exchange are two “elements” contributing to meaningful use. However, they are incomplete without a third element: “those components of an infrastructure, including technology and policy, that are necessary above and beyond meaningful use to support public health and research and to create a learning health care system.” ONC now considers Element 3 “a major feature of why we are going forward” and has set as its highest-level goal the creation by 2015 of “a federated, integrated learning system for health care quality improvement and population health.”

The E3 scenario is that any authorized person could broadcast a question to other members of the learning system. Simple questions would generate “rolled-up” answers; for more complicated questions, participating members with relevant data could supply the questioner with de-identified data for analysis. (There would be no “centralized database.”)

Dr. Friedman pointed out that there are “islands” of E3 all over the country that need to be leveraged. ONC’s E3 plan has four components: building generalized recognition of the need, developing a single technical architecture,creating data definitions and standards, and establishing a policy and governance structure. It has contracted with IOM to hold a series of multi-stakeholder workshops in July, September, and October on an infrastructure to create a learning health care system in support of population health. It will convey its findings in a report by the end of 2010.

NCVHS members and staff received Dr. Friedman’s E3 report with enthusiasm, noting its resonance with core NCVHS priorities and the Committee’s interest in contributing to this developmental effort. Some members commented on the importance of affordability as an additional objective for the learning health care system. Ms. Greenberg noted the relevance of the new NCVHS concept paper, “Toward Enhanced Information Capacities for Health.” Dr. Friedman said the process was just getting under way, and he would relay the Committee’s interest to the IOM planning committee. Mr. Reynolds cautioned against creating an environment that requires people to “chase the committee” in lieu of clarity about who is doing what and how communication will take place.

Dr. Hornbrook and Dr. Carr commented on the need for human factors engineering related to the culture, sociology and psychology of informatics as people are subjected, willy-nilly, to transformative change, and some at the point of care react with strong resistance.

Recognition of Outgoing Members; Announcement of New NCVHS Chair

In recognition of Jeff Blair, whose NCVHS term recently ended after 12 years of service, Mr. Reynolds said his comments at a special dinner that evening would have as their theme, “Be like Jeff.” Mr. Scanlon then read a letter and certificate of appreciation for Mr. Blair’s service from the Secretary. Ms. Greenberg then read a plaque from NCHS, also honoring and thanking Mr. Blair.

On the occasion of Mr. Reynolds’ retirement, Mr. Scanlon then read a letter and certificate of appreciation from the Secretary, acknowledging his seven years of service, and Ms. Greenberg read a plaque from NCHS, honoring and thanking him.

Mr. Scanlon announced that Dr. Carr has accepted the Secretary’s appointment to be the next NCVHS Chair.

Plans for the NCVHS 60th Anniversary Symposium

Ms. Greenberg and NCVHS members began by acknowledging the staff members and others who worked on the anniversary symposium and its documents and videos. She then briefed the group on the plans for the symposium and reception. She highlighted the video that Ms. Jackson and Ms. Jones helped develop, which has excerpts from the roundtable discussion among present and past NCVHS Chairs held in Charlottesville, VA last September. She also noted the series of events taking place throughout 2010 in connection with the NCVHS 60th anniversary, and the 60-year history written for the occasion. She and Dr. Carr commented briefly on the other advisory bodies with which NCVHS will want to have more communication in the future; Dr. Carr mentioned the Healthy People advisory committee.

The remainder of the day was devoted to subcommittee breakout sessions, followed by a dinner in honor of Mr. Reynolds and Mr. Blair.

DAY TWO

Community Health Data Initiative; Health Indicators Warehouse

Dr. Linda Bilheimer, NCHS (slides)

As noted, the Community Health Data Initiative (CHDI) is one of the five flagship initiatives of the HHS open government plan. It is designed to promote the dissemination of national-, state- and community- level data for use in developing applications to promote population health at all levels, and also to promote feedback to HHS about community-level health issues. It was Todd Park, the new HHS Chief Technology Officer, who envisioned the development of a network of people who supply data and people who develop applications. The content will be a wide range of health indicator data in a user friendly form, for a wide variety of end-users (patients, consumers, providers, community leaders, policy-makers, businesses, researchers, et al.). One objective is to encourage the development of innovative applications and their use to create awareness in communities about local health status.

The data come from a variety of sources. The main HHS contribution is the Health Indicators Warehouse, which provides health indicator data for a wide range of users and is being developed to be the HHS hub for the CHDI, ready by December 2010, to augment many other sources from other levels of government and private sector suppliers. To stimulate this process, IOM held a CHDI brainstorming meeting in March, 2010, bringing together Web 2.0 developers, business and community leaders, and government health data and policy experts. The meeting produced ideas for high-value applications, and commitments to develop many of them this year. One that people are excited about is a new set of Medicare community-level indicator data. An interim, basic website with downloadable datasets is already up and running, ahead of schedule. Healthy People 2020 baselines and indicators will be posted by December.

A June 2 launch meeting for the CHDI was well attended, and generated ideas for the future. Dr. Bilheimer showed a few applications demonstrated at that meeting, including ones by Google and Microsoft; a dashboard for Sonoma County, CA; and the “Community Clash” game on the MeYou Health website. Another that generated comments is Asthmopolis, which uses GPS to track asthma inhaler use.

In the near future, CHDI is hosting a Health 2.0 developer challenge, with regional code-a-thons and team competitions, culminating in a final challenge during the October 2010 Health 2.0 conference in San Francisco. Meanwhile, NCHS will continue to develop the Health Indicators Warehouse, to provide pre-constructed national, state, and local-level indicators (no individual-level data) to support multiple functionalities along with supporting metadata. NCHS also is working to secure the funding streams to maintain the Warehouse, and developing a process for selecting new indicators and updating and improving existing ones.

Asked about the risks of re-identification, Dr. Bilheimer said the data in the warehouse are not microdata but aggregated indicator data. To another comment, she agreed that timeliness is a general issue for the community health status data; they function primarily as a call to action in areas that then require more active tracking. Dr. Ferrer suggested tapping academic medical centers for more timely data. Dr. Francis stressed the importance of the developers’ privacy policies and consents. NCVHS members also talked with Dr. Bilheimer about NIH participation and the potential to connect to the CTSA network; how expertise for this type of thinking and data use will be developed; the inclusion of SEER data and getting the VA involved in order to geographically track cancer and the burdens of current wars, respectively; and the need for the site to include caveats about the difference between association and causation.

Subcommittee Report-Outs

·        Subcommittee on Privacy and Confidentiality Mr. Houston

 

The Subcommittee held hearings on sensitive information in medical records on June 15, covering areas including mental health, genetics, child and adolescent health, and reproduction. It has begun drafting a letter that it hopes to present for full Committee approval in September. A particular aim is to categorize sensitive information to help people in their own organizations. The Subcommittee hopes to hold hearings on governance in the Fall, and is coordinating efforts with the Center for Democracy and Technology and ONC. (Mr. Houston is part of a new Privacy & Security Tiger Team, comprised of members from the HITPC, HITSC, and NCVHS, that will work over the next few months to address the requirements of HITECH and the needs of many new organizations created under that law.)

Dr. Hornbrook expressed concern about how to help consumers understand their privacy risks, and Mr. Houston agreed that this is a huge issue. Dr. Suarez observed that EHR and HIE systems will eventually have the capability to segregate and allow users to handle data appropriately and also to protect data. Dr. Overhage noted the need to balance personal responsibility and protection, supported by adequate consumer education. Mr. Blair commented on the technical difficulties of sequestering and masking sensitive data, which particularly limits information sharing across states. Mr. Reynolds noted that de-identification is widely misunderstood, and the practice of outsourcing is spreading rapidly.

·        Subcommittee on Population Health Mr. Land, Dr. Steinwachs

 

Mr. Land shared the good news that earlier threats to the national vital statistics system have been mitigated through improved funding. In addition, to expedite data availability, a process has been developed to provide technical assistance to states that are having problems producing data. A new contract with state systems will be implemented in January 2011.

Dr. Steinwachs said the Subcommittee will coordinate its plans for future work with other subcommittees, to maximize synergism around cross-cutting issues. There is a lot of interest in Element Three, including the idea of a “learning public health system,” linked to the idea of an IT infrastructure for public health, and also to the community health data and indicators reported on by Dr. Bilheimer.

Mr. Reynolds thanked the Subcommittee for its leadership on developing the NCVHS concept paper on information capacities for national health. Dr. Carr announced that Dr. Scanlon is stepping down as co-chair of the Subcommittee, to be replaced by Dr. Green. Dr. Green thanked Dr. Scanlon and Ms. Kanaan for their contributions to the concept paper.

·        Subcommittee on Standards –Dr. Warren

 

The Subcommittee has been planning its July hearings, responding to the explicit mandates for NCVHS in the ACA related to standards. She and Dr. Suarez are working with a writer on creating briefing papers for those participating in the hearings, and for the full Committee. A letter to the Secretary must be ready by September. The first topic will be the unique health plan identifier, followed by identifying operating rules for eligibility and claims attachments.

·        Subcommittee on Quality Dr. Carr

Given the overlap between the membership of the Populations and Quality subcommittees and the need to play an active role in standards work, there is talk of developing a single agenda. The Subcommittee, to gain greater understanding of meaningful measurement and meaningful use, plans to get feedback from integrated and distributed health care organizations that have used a core data set with their EHRs. Kaiser Permanente and Regenstrief, respectively, are mature programs, structurally quite different, from which others have a lot to learn. The Subcommittee plans a hearing where elite mature programs such as these can talk about what got better, why, and what they needed to learn and do to get where they are. In other words, how can the benefits of EHRs be harvested?

Dr. Scanlon added that one topic of interest is the comprehensiveness of their data. The Committee’s December 2009 letter on a core data set talked about building a range of elements to enable the construction of reliable and valid quality measures. The Subcommittee views this as an alternative to the “significantly flawed” current paradigm, that every EHR will be able to produce quality measures. Instead, a range of data elements could be provided with which a number of measures could be built.

Dr. Carr noted the continuity of this approach with the candidate recommendations put forward by the NCVHS Quality Workgroup in 2004, and particularly the notion of building blocks. The issue of data integrity is key.

Dr. Suarez noted that the Health IT Standards Committee and the Clinical Quality Work Group are doing relevant work on quality and performance measures. In response, Dr. Carr stressed the importance of knowing the entire landscape of who is doing what work, to whom they are reporting, and where the gaps and redundancies are. Dr. Suarez commented on the likely need for many joint activities, as well, such as holding joint hearings for more than one FACA committee.

Mr. Reynolds turned over the gavel to Dr. Carr for the final agenda item, urging the Committee to continue to “play hard” and remember its continuing role in helping define the long-term policy agenda.

Future Meeting Plans

Dr. Carr noted the value of the present meeting’s opportunities for dialogue and idea-sharing. She stressed the need to prioritize future work, made more critical by the small size of NCVHS, with several vacancies, and the short timeline. The last few months have shown what can be accomplished through conference calls and webinars. As overarching priorities, she highlighted the forthcoming standards work, new levels of collaboration between the subcommittees on population health and quality, and the need to clarify the landscape of what work each federal advisory body is doing and to improve communication among them.

The Executive Subcommittee will meet for a half-day on September 16 and for a full day on November 30. The idea of a joint meeting with the Health IT Standards Committee was mentioned.

The group briefly discussed future meeting dates and the September full Committee agenda and action items.

Dr. Carr then adjourned the meeting.