Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

March 1 – 2, 2012

Doubletree Hilton Hotel
8727 Colesville Road
Silver Spring, MD 20910

Meeting Minutes

The National Committee on Vital and Health Statistics was convened on March 1 – 2, 2012 at the Doubletree Hilton Hotel in Silver Spring, MD. The meetings were open to the public.

Present:

Committee members:

  • Justine M. Carr, M.D., Chair
  • John J. Burke, MBA, MSPharm.
  • Bruce Cohen, Ph.D.
  • Leslie Pickering Francis, J.D., Ph.D.
  • Larry A. Green, M.D.
  • Mark Hornbrook, Ph.D.
  • Linda Kloss, RHIA, CAE, FAHIMA
  • Vickie Mays, Ph.D., MSPH
  • Sallie Milam, J.D., CIPP/G
  • William J. Scanlon, Ph.D.
  • W. Ob Soonthornsima
  • Walter Suarez, M.D.
  • Paul Tang, M.D.
  • James Walker, MD, FACP
  • Judith Warren, Ph.D., R.N.

Absent:

  • Raj Chanderraj, MD, FACC
  • Blackford Middleton, M.D., MPH, MSc
  • Len Nichols, Ph.D.

Lead Staff and Liaisons:

  • Marjorie Greenberg, NCHS, Exec. Secretary
  • James Scanlon, ASPE, Exec. Staff Director
  • J. Michael Fitzmaurice, Ph.D., AHRQ Liaison
  • Judy Murphy, ONC Liaison
  • Robert Kaplan, Ph.D., NIH Liaison

Others:

  • Debbie Jackson, NCHS
  • Katherine Jones, NCHS
  • Marietta Squire, NCHS
  • Susan Baird Kanaan, Consultant
  • Leslie Cooper, NIH
  • Vivian Auld, National Library of Medicine
  • Edwin Lomotan, AHRQ
  • Harley Geiger, CDT
  • Robert Tennant, MGMA
  • Tammy Banks, AMA
  • Steven Lazarus, BIG
  • Thomas Bizzaro, FDB
  • Peter Barto, Pricewaterhousecooper
  • David Forrest, HHS
  • Todd Park, HHS
  • Lucas Tramontozzi, Louisiana Dept. of Health & Hospitals
  • David Sprenger, Policy Matters
  • Allen Tien, MDLogix
  • Betsy Walton, CMS

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

EXECUTIVE SUMMARY

ACTIONS

  1. The Committee unanimously passed a motion approving a letter on ACA 10109.
  2. The Committee unanimously passed a motion approving a letter on the maintenance process for standards and operating rules.
  3. The Committee unanimously passed a motion approving a letter on claims attachments.
  4. The Committee developed a draft letter on ICD-10 code sets. The letter was referred to the Executive Subcommittee for final revision and action.

HHS Data Council Update — Mr. Scanlon

Mr. Scanlon briefed the Committee on HHS plans and initiatives, the data standards initiative, a data strategy review and white paper, and an HHS request that NCVHS create a working group on HHS data access and use. TheDepartment asks that it be composed of NCVHS members and non-members, persons with interest and expertise in connecting local users to meaningful information from Federal data resources. The group will think about how to move the data out to developers, application folks, and potential users. NCVHS members expressed strong interest and support for this new assignment.

Dr. Carr welcomed Judy Murphy, the new ONC Liaison to NCVHS.

ONC Update — Judy Murphy, ONC Liaison (slides)

The recent HIMSS meeting offered evidence that EHRs are now perceived as inevitable. ONC continues its work on EHR adoption, and is also looking beyond adoption. Meaningful Use is accelerating, and ONC is working on establishing the link between the use of health IT and quality, safety, health care reform, and the impact on patient outcomes, along with a new focus on consumer engagement and empowering patients as partners. Interoperability and health information exchange also are being emphasized at ONC, which is consolidating information on HealthIT.gov, with tabs for providers/professionals, patients/families, and (soon) health IT professionals. Its “Putting the I in Health IT” media campaign targets patients and clinicians. The Health Information Technology Resource Center will be made widely accessible in 2012. The experience with e-prescribing has been very positive; and Beacon Communities are starting to produce outcomes. Both workforce programs have already produced graduates, who are linked to the marketplace.

CMS Update — Lorraine Doo

Ms. Doo reported on CMS’ work on 5010 (where it is exercising enforcement discretion and wants to be told about unresolved technical issues); forthcoming ACA regulations; impending actions on ICD-10 code sets; and a highly successful day-long summit that she (OESS) convened for standards organizations, operating rule entities, and code committees on February 28, to help facilitate convergence and collaboration around common purposes. The group created a coordinating body that will help develop and coordinate the needed subject matter expertise for developing operating rules to support standards. Dr. Carr and others commended Ms. Doo for her exceptionalleadership.

In the discussion period, Dr. Tang raised the question of how the ICD-10 code set delay could be “turned into lemonade,” and in particular, how the classification could be mapped to clinical terminology to take full advantage of EHRs and their derivatives. This topic was discussed further later in the meeting.

Standards Letters — Dr. Suarez

On behalf of the Subcommittee on Standards, Dr. Suarez presented draft letters on 1) claims attachments, 2) the provisions of ACA Section 10109, and 3) the maintenance process for standards and operating rules. He explained the context for and purpose of each letter, and discussed them with NCVHS members. In its break-out session, the Subcommittee revised the letters based on these discussions. On day two of the meeting, NCVHS approved all three letters (see ACTIONS, above).

Briefing on Population Health SES Workshop — Dr. Mays (slides)

The Department has asked NCVHS (Subcommittee on Population Health) to look at the state of the art and the state of practice in federal surveys relating to several variables of social and economic status, and also to identify potential opportunities for standardization. NCVHS will hold a workshop on March 8-9 to examine the collection of data on income, education, and occupation (the major components of SES) and to explore the uses of SES information and how well the measures work for different users. It will also look at data quality and gaps as well as the potential for linkages and the implications for administrative records and EHRs. The resulting letter will be presented to the full Committee for approval in June, with recommendations to the Secretary and suggested next steps. Dr. Cohen commented that the hearing will be an opportunity to talk with experts about a vision for where we should take these areas, conceptually and operationally.

Preparation for Use of Data after Transition to ICD-10 Code Sets: Quality Measures — Floyd Eisenberg, MD, National Quality Forum (slides)

Dr. Eisenberg discussed the anticipated impact on quality measurement of the transition from ICD-9-CM, on which much quality measurement is now based, to ICD-10 code sets. He and NCVHS members talked about ways to facilitate the transition, minimize disruptions, and use the delay to improve coordination among classification, coding, and clinical concepts.

Mapping between ICD (9-CM and 10-CM) and SNOMED CT — Vivian Auld, National Library of Medicine (NLM) (slides)

The NLM is the distributor of HIPAA classifications, code sets, and terminologies required for EHR certification within UMLS and the designated HHS coordinating body for clinical terminologies, including developing relevant mappings. Ms. Auld focused her presentation on mappings from SNOMED CT to ICD-9-CM, to ICD-10, and to ICD-10-CM; and from ICD-9-CM to SNOMED CT. The maps are designed to address specific problems people are encountering rather than trying to map “everything.” See slides for technical details.

On February 29, NLM published a new map from SNOMED CT to ICD-10, which is posted on the NLM site. The map leverages international work, including work by IHTSDO, WHO, and the map developed by the UK National Health Service. It is meant to be embedded in the EHR for real-time, interactive ICD code generation, and to assist coding professionals by suggesting ICD codes based on SNOMED CT-encoded problem list entries. Finally, Ms. Auld gave an overview of a new tool called I-MAGIC, developed by NLM. It was just released; the full map will be available in June. It is standardized, and will be maintained by the federal government.

The presentation stimulated a lively discussion with NCVHS members and staff. Members expressed enthusiasm about I-MAGIC as a welcome and usable presentation layer for clinicians. In further discussion of the impending ICD-10 code set delay, Dr. Tang reiterated that NCVHS should help take advantage of the delay to “mind-shift to the future.” The Subcommittee on Standards will hold a hearing or hearings in June on the status of 5010 and the ICD-10 code sets, giving a chance to engage industry and help prepare to meet the timeline.

Committee Business

Dr. Carr announced that because Dr. Warren’s term ends in June (along with five other NCVHS members), she has stepped into the emeritus position and will be replaced by Mr. Soonthornsima as co-Chair of the Subcommittee on Standards.

Following votes on the three standards letters (see above), Dr. Carr read aloud a draft letter to the Secretary on ICD-10 code sets. There was considerable discussion, resulting in revisions to the letter. The revised letter was presented to the Committee for two votes on timing aspects (see detailed summary), and referred to the Executive Subcommittee for completion.

Subcommittee Reports, Strategic Plans and Next Steps

(See the brief summaries of these reports in the meeting summary below.)

CMS Line of Service for Information Resources — Todd Park, Moderator

  • Introduction — Mr. Park

HHS is engaged in a large-scale effort to unleash the power of data and information to improve American health and health care. The initiative is mobilizing multiple tool developers and data users to maximize the socialreturn on data. The Department is engaged in many activities to make people aware of its data assets, and is “doubling down” on health data initiatives such as the annual Health Datapalooza and healthdata.gov. HHS and CMS are investing in the proactive provision of CMS-based data innovation products as a priority that is at the core of what CMS does for the country.

  • The Plan — Niall Brennan, Director, Policy and Data Analysis, CMS (slides)

Mr. Brennan gave an overview of the scope of CMS services, beneficiaries, and data holdings. He described CMS’s efforts to learn about data users’ needs inside and outside the agency, and its progress in data dissemination over the last year to support data-driven decision-making. He characterized these activities as “the leading edge of a new wave of CMS data uses” and described some of the technical work, analytics, and policysteps under way and their anticipated benefits.

  • NCVHS Reactor — Bruce Cohen, Ph.D.

Dr. Cohen encouraged CMS as it develops its product lines to think about how to build on existing resources such as existing web-based data query systems. Further, when addressing public and community health, CMS data should be regarded as “one piece of the puzzle” that needs to be integrated into a larger context. He suggested that CMS develop a program to work with states to help them use and develop their existing capacity and infrastructure to incorporate newly liberated data; and he encouraged CMS to think in terms of public-private partnerships. Finally, he praised the idea of a data enclave for individual-level data and suggested that the strategy be integrated with the enclaves of other federal agencies to provide access to all federal data.

  • Data Users and Perspectives Panel

The following panelists gave brief presentations about their organizations’ activities, in some cases sharing recommendations for federal approaches to liberating data and promoting effective data use. (The presentations are briefly summarized on pages 19-22.)

  • Kerry Hicks, HealthGrades (prepared remarks)
  • Brian Kelly, MD, Aetna (slides)
  • Harley Geiger, JD, Center for Democracy and Technology (slides)
  • Bill Davenhall, Esri (slides, prepared remarks)
  • Joshua Rosenthal, PhD, Rowd Map (slides)

  • NCVHS Reactor — Bill Scanlon, Ph.D.

Stressing the essential role of data in policy decisions, Dr. Scanlon hailed the new improvements in data access, usability, and timeliness. He suggested further improvements in each of the areas in which information isneeded — policy-making, clinical care, and consumer/patient decision-making. For example, the 1983 DRG-PPS system should be refined, and data access and sharing across federal agencies should be made easier. He encouraged CMS to think of providing users with technical assistance as part of its line of business, and he stressed the importance of transparency with respect to consumers and patients so that everyone knows how data arebeing used. Finally, he saluted the private companies that are already sharing their claims data, noting that all data sources should be encouraged to share their data.

  • Discussion

This special session stimulated a wide-ranging discussion among NCVHS members and the presenters. The first topic concerned data maintenance and enabling data collection to evolve in response to new needs and uses. Mr. Park stressed the importance of ongoing dialog between data owners and users, and pointed out that HHS is just one supplier: “This is an American initiative.” A concern about “indicatoritis” prompted him to note that both a wealth of indicators and summary measures are needed, with accelerated R&D to determine what truly meaningful measures are for different users and situations.

Dr. Green observed that NCVHS found in its recent community health project that while communities want to take responsibility for their own health, the U.S. is missing the infrastructure and analytic workforce to make this possible. A panelist added that there should be “a Blue Button for communities.” After describing current Federal initiatives to support community data use, he called for feedback from data users about what they coulddo to improve health if they had particular data as the driver and encouraged NCVHS to help make this dialog happen. The group noted the workforce issues in all these visions; but Mr. Park predicted that supply would follow demand in this area. Finally, responding to concerns about the proliferation of disparate measures and data, he predicted that data liberation and sharing will gradually and naturally promote standardization and harmonization,provided the basic structure is in place.

Public Comment: Lucas Tramontuzzi, Chief Data Officer, Louisiana Dept. of Health and Hospitals

Mr. Tramontuzzi described his state’s perspective on using CMS and HHS data and its challenges. He concluded by urging NCVHS to “be agents of change.”

Wrap-up — Dr. Carr

Dr. Carr observed that in 2002, NCVHS published its vision, Shaping a Health Statistics Vision for the 21st Century, and she celebrated the fact that a decade later, that vision is becoming a reality. She expressed the Committee’s excitement about collaborating on the activities and priorities explored in this session.

DETAILED SUMMARY

–Day One–

Welcome, Introductions, Review of Agenda

Following introductions, Dr. Carr expressed thanks to all NCVHS staff members, liaisons, writers, and other support persons. She then welcomed Mr. Scanlon.

HHS Data Council Update — Mr. Scanlon

Mr. Scanlon briefed the Committee on HHS plans and initiatives, the data standards initiative, a data strategy review and white paper, and an HHS request of NCVHS to create a working group on HHS data access and use.

Initiatives: In addition to its strategic plan, HHS has several more-focused initiatives and strategies in the works. Interagency working groups are looking at early childhood health and development and other topics. In every initiative, there is an emphasis on action and evaluation.

ACA standards: In response to requirements in ACA Section 4302, the Data Council formed a work group on data collection minimum standards related to race, ethnicity, language, disability status, and gender. After looking at current practices and standards, it recommended a set of standards on the first two. It also looked at and recommended standard questions on language for population HHS surveys, andit reviewed the questions on disability asked by the Census Bureau, which the work group found acceptable. All of these are now adopted, and agencies will be asked to include them in their surveys. The combined result would approach a minimum demographic data set.

HHS has asked NCVHS to look at best practices for what might be included as a data item on socioeconomic status, as the beginning of a process on that topic. Initially, the focus is on survey situations where individuals are asked about SES; it remains to be seen how much the same standards could be applied to administrative data and, ultimately, electronic health records. Standards organizations are moving in the same direction.

The Department is also starting to look at data collection on sexual minority populations including lesbians, bisexuals, and transgender. Questions on sexual orientation are being tested for the National Health Interview Survey; and the Department has held listening sessions on transgender.

Data strategy review: HHS leadership asked the Data Council to look at the entire portfolio of HHS data collection and analysis activities in terms of their necessity, whether they reinforce each other, whether the processes are optimal, and whether they address priority data gaps in a coordinated way using the latest technology. Another topic of interest is what pilot projects might be possible. Mr. Scanlon offered to give a full presentation on the findings at another meeting. The ability to monitor the implementation and outcomes of health care reform emerged as the top priority, and they did a “deep dive” into that question. He outlined thetopics being investigated in that area, the information sources, and the ideas that are emerging (see transcript for details).

Request for a new NCVHS Workgroup: There is renewed interest at HHS in organizing its data (e.g., Hospital Compare) better and making them more helpful for local decision-makers and public health professionals. To help achieve this goal, the Department is asking NCVHS (for which this is already an established theme) to create a workgroup or subcommittee composed of NCVHS members and non-members?persons with interest and expertise in connecting local users to meaningful information from Federal data resources, including HHS data. The group will think about how to move the data out to developers, application folks, and potential users. There is funding to support the effort; and the technology is available to assist in it.

Discussion

Dr. Carr noted the relevance to the new assignment of the Quality Subcommittee’s recent work on meaningful measures notably the ideas of starting with what is available and understanding how people use data. She also notedthe closely related NCVHS report on the community as a learning system for health. Dr. Tang affirmed the Committee’s “deep interest” in this endeavor. Ms. Greenberg explained that the Workgroup will report to the full Committee, and its recommendations will come through the full Committee. She pointed to the relevant session on the CMS line of information serviceson day two of the present meeting.

Mr. Soonthornsima noted the varied meanings and uses of the terms “local” and “community,” and cited all-payer databases as another emerging data resource. Mr. Scanlon said it would be up to the new Workgroup to determine the project’s scale and scope. Dr. Suarez commented on the need to coordinate with SDOs with respect to section 4302 elements, and he noted the IOM’s recent recommendation that a federal health information model be developed.He recommended that each NCHVS subcommittee have a representative on the new Workgroup.

Dr. Carr welcomed Judy Murphy, the new ONC liaison to NCVHS.

ONC Update — Judy Murphy, ONC liaison (slides)

The recent HIMSS meeting offered evidence that EHRs are now perceived as inevitable. While ONC continues its work on EHR adoption, it is also looking beyond adoption. Meaningful Use is accelerating. Other things demanding attention include establishing the link between the use of health IT and quality, safety, health care reform, and the impact on patient outcomes, along with a new focus on consumer engagement and empowering patients as partners. Interoperability and health information exchange also are being emphasized at ONC. It is now consolidating information on HealthIT.gov, with tabs for providers/professionals, patients/families, and (soon) health IT professionals. Ms. Murphy then showed slides from ONC’s “Putting the I in Health IT” media campaign, which targets both patients and clinicians.

She stressed the multiple facets of the Meaningful Use initiative, including regional extension centers and workforce training, feeding into EHR adoption and information exchange, all toward the goal of improving individual and population health outcomes. Meaningful Use has made great strides in the last couple of years, especially for hospitals. The results are less good for Medicaid-eligible providers.

Two Stage Two NPRMs were published on February 24; and the comment period ends 60 days after March 7. She explained the nuances of certification criteria, which have been modified (see transcript and slides 13 and14).

On the Health Information Technology Resource Center, Ms. Murphy said that while it was initially available only to the 72 regional extension centers, it will be made widely accessible in 2012. The experience with e-prescribing has been very positive, and the Department is now working to see the same kind of benefits with lab exchange and exchange of transition of care summaries between venues. ONC is working to make those areas proliferate in 2012. Beacon Communities, which she called “shining lights,” are starting to produce outcomes. There are two workforce programs: the Community College Consortium, involving 80 colleges; and university-based workforce training. Both have already produced graduates. Trainees are linked to the marketplace, and there will be new internships and vendor-specific training in the future. Enrollees receive a $10,000/year subsidy.

Finally, Ms. Murphy described ONC’s investments in innovation (grants), its Strategic Health IT Advanced Research Projects (SHARP) grants, and a new Consumer eHealth Pledge Program in which organizations pledge to get consumers involved in their own health through specific initiatives.

Discussion

Dr. Fitzmaurice asked about provisions to ameliorate intellectual property issues, and Ms. Murphy said ONC hadn’t addressed that issue. He noted that making costs and where they exist known and reducing costs might increase adoption. To a question about detailed data on usage, Ms. Murphy said a lot of information on adoption and usage can be found on healthdata.gov. Dr. Francis raiseda concern about a widening digital divide and racial and ethnic disparities, and Ms. Murphy agreed that everyone wants to keep track of that. To another question, she told Dr. Cohen she would connect the Subcommittee on Quality to the SHARP research project on patient-centered cognitive support so the Subcommittee can follow what they are doing. Dr. Green recommended partnering with the medical societies to monitor adoption and meaningful use via maintenance of certification data.

CMS Update — Lorraine Doo

Ms. Doo commented on the strong collaboration between CMS and ONC around meaningful use and certification. She referred NCVHS members to the CMS website for data on registrations and attestations, including regional breakouts. This is updated every month. She talked about the proposed rule, noting CMS’ efforts to address users’ concerns.

The Office of eHealth Standards and Services (OESS) is focusing on the 5010, D.O and 3.0. In view of concerns about readiness, CMS has exercised enforcement discretion to give entities time to work through testing issues. They are seeing progress. Medicare is working actively with Medicare Administrative Contractors (MACs). OESS asks those with unresolved technical issues to let them know so they can provide technical assistance and analyze the patterns of problems that are arising. However, they do not expect to extend the enforcement discretion period.

These ACA regulations are coming out: the interim final rule on adopting a standard for electronic funds transfer, for which the comment period ends March 12; the proposed rule for the plan identifier, which will come out by the end of the first quarter; an interim final rule with comment adopting operating rules for electronic funds transfer and electronic remittance advice, scheduled to come out by July 1; and compliance certification for health plans, scheduled to take effect at the end of 2013.

On ICD-10 code sets, the Secretary and the Administrator took concerns from provider communities about burden seriously, and the Department will look at using the regulatory process to add some time for industry. CMS is making every effort to make the testing work; it will post messages on its website about this.

Ms. Doo then described a day-long summit that she (OESS) convened for standards organizations, operating rule entities, and code committees, to help facilitate convergence and collaboration around common purposes. Using a consensus-oriented process called “dynamic governance,” the meeting identified the major issues and strategies for going forward. It was deemed highly successful in forging a proposal acceptable to all participants. The groupcreated a coordinating body that will help develop and coordinate the needed subject matter expertise for developing operating rules to support standards. The next task is to create an acceptable written document based on themeeting.

Drs. Carr and Suarez participated in the meeting, and Ms. Doo thanked NCVHS for its support and participation. Dr. Carr and others commended Ms. Doo for her exceptional leadership.

Discussion

Dr. Tang raised the question of how the ICD-10 code set delay could be “turned into lemonade” ? notably, how the classification could be mapped to clinical terminology to take full advantage of EHRs and their derivatives. Further discussion of this topic was deferred to later in the meeting. Dr. Fitzmaurice again raised the issue of intellectual property and fees for using standards.

Standards Letters — Dr. Suarez

Dr. Suarez began by acknowledging Ms. Doo’s leadership and approach in the meeting just described, which was very helpful. He stressed the widespread commitment to collaboration, coordination, and active engagement among the meeting’s participants.

Then, on behalf of the Subcommittee on Standards, he presented draft letters on 1) claims attachments, 2) the provisions of ACA Section 10109, and 3) the maintenance process for standards and operating rules.

The first letter reports on the findings of an NCVHS hearing held last November to understand current practices and the status of the development of the standard. There will be another hearing on the topic early in 2013. HIPAA assigned NCVHS the task of defining standards for the electronic submission of claims attachments; and the ACA directs the Secretary to publish final regulations on this by January 2014. The standards, Dr. Suarez said, are still evolving; he added that they bring together the two “worlds” of administrative and clinical information. He reviewed the major messages of the letter, stressing industry’s strong support for the identification and adoption of an electronic standard for claims attachments, as well as the interest in reducing/minimizing the number and type of attachments needed. There is support for the type of message HL7 is used to. The hearing participants also discussed priorities and recommended provisions for “unsolicited” claims attachments. NCVHS recommendations will be developed after the second hearing.

Dr. Scanlon praised Dr. Suarez’ presentation, calling it “an incredible introduction to a topic that in my mind may be one of the most important things the Committee deals with over the next couple of years” and adding that it involves the entire Committee. He urged NCVHS colleagues to learn from the letter. Dr. Tang proposed that “the whole notion of a claims attachment is a paper-based concept,” and further that in an AC(non-fee-for-service) world, attachments will not be needed. Dr. Suarez agreed with both points and noted the need to allow the transmission of whatever medical information is needed to adjudicate a payment, however it is made. Dr. Warren noted that it will take time to move to the ACO world. This kind of letter is intended to stimulate the conversation about how to prepare for the future. Several members noted the need to think about where wewant to be and to develop a robust interim strategy.Ms. Milam asked about the impact on privacy notices.

Moving to the second letter, on ACA Section 10109, Dr. Suarez said the Secretary was directed to consider input from NCVHS and other experts on how to improve the efficiency in several areas of administrative and financialprocess. NCVHS held a hearing to gather information for itself and the HIT Policy and Standards committees on four complex areas: provider enrollment, consolidation of the insurance sector, the audit, and claim edits. Dr. Suarez reviewed the NCVHS preliminary recommendations, which focus on a process for moving forward toward substantive recommendationsin these areas.

Committee discussion focused primarily on process and planning issues.Dr. Scanlon noted the need to identify priorities among the assigned areas. Dr. Francis suggested the metaphor of redecorating a room, in which a particular order makes the most sense. Mr. Soonthornsima noted the need to understand what the industry is going through now as part of developing appropriate strategies. Dr. Tang urged the Committee to keep its eye on the future and offer guidance on system-building and data requirements with that in mind, facilitating leapfrog opportunities where possible. Dr. Walker suggested offering a high-level cost-benefit analysis. Dr. Warren observed that it is always necessary to think in two timeframes, the present and the future.

Turning to the third letter, Dr. Suarez said that because the Subcommittee felt it was important to address the maintenance process for standards and operating rules, it held hearings with SDOs, authoring entities, and others in the industry to understand the current process and how to improve it. He described the resulting draft letter, which focuses on how to begin transforming the ways in which industry maintains standards, to improve coordination across all stakeholders. The first recommendation, which has already been acted upon, was to hold the meeting Ms. Doo just convened (described above); that meeting will generate a series of actions. The failure to do any of the testing recommended by NCVHS for the 5010 has resulted in serious problems that need to be solved quickly. The Subcommittee’s letter reiterates the importance of testing for all new standards and versions. Ms. Doo said she has gotten funding to pilot test the standards.

Briefing on Population Health SES Workshop — Dr. Mays (slides)

Mr. Scanlon explained that the Secretary decided to look at the potential for standardizing information on socioeconomic status (SES) as part of fulfilling ACA requirements. A standard has a much higher level of meaning than simply a “good practice”; because it reduces freedom and variation,it requires evidence that it works and serves people’s purposes. The Department asked NCVHS (Subcommittee on Population Health) to look at the state of the art and the state of practice in federal surveys relating to several variables of social and economic status, and also to identify potential opportunities for standardization. For example, it is even difficult to generatefederal poverty levels because of variations in practice. The idea is to identify/create a minimum standard that can be expanded for additional granularity.

Dr. Mays said the focus is on federally conducted or supported health care surveys. Any standard will need to be practical, inexpensive, and not burdensome to work well on national surveys. NCVHS recommendations will inform the Data Council’s work on drafting data standards recommendations. NCVHS will hold a workshop on March 8-9 to examine the collection of data on income, education, and occupation (the components of SES) and to explore the uses of SES information and how well the measures work for different users. The Subcommittee will also look at data quality and gaps, as well as the potential for linkages and the implications for administrative records and EHRs.

Dr. Hornbrook noted that the WHO definition of health includes economic opportunity as a factor, and he hopes this will be part of the Committee’s motivation for doing this study. Dr. Mays said it would, as part of the longer-term framing of the issues. Income is measured differently across different surveys, and it is expected to be a challenge to come up with a minimum standard for it. There is particular interest in the linkages between income and health. Regarding education, she noted the difference between education and educational attainment and the implications of education for social stratification. Occupation is the most underutilized factor at present.

The letter that results from the hearing will be presented to the full Committee for approval in June; it will include recommendations to the Secretary and suggest next steps.

In the discussion period, there were comments on the tradeoffs between a short list of data items and having greater granularity; the potential benefits of standards for EHRs; and the need for data on vulnerability to decline. Mr. Scanlon pointed out the distinction between a minimum standard for collecting a core set of data, the immediate focus of this project, and more expanded sets of data that are desirable for specific purposes. Dr. Cohen commented that the hearing will be an opportunity to talk with experts about a vision for where we should take these areas, conceptually and operationally.

Preparation for Use of Data after Transition to ICD-10 Code Sets: Quality Measures — Floyd Eisenberg, MD, National Quality Forum (slides)

Dr. Eisenberg is Senior Vice President of Health IT at NQF. The Committee asked him to talk about the anticipated impact on quality measurement of the transition from ICD-9-CM, on which much quality measurement is based, to ICD-10 code sets. NQF had an expert panel that produced a consensus report on ICD-10-CM and PCS coding maintenance and operational guidance for measure developers, published in 2010, and has recommended best practices. There is also a timeline for the transition to ICD-10 code sets for measures, which will be revised when the Secretary announces a new deadline forICD-10 code set implementation. They have been accepting measures in both ICD-9-CM and ICD-10-CM and PCS since October 2011, and are starting to see ICD-10 code sets. He described the NQF-recommended “retooling” process, which has six steps, for measures being submitted for NQF endorsement. He noted that some changes will amount to a change in the “intent” of the measure.

Dr. Carr said the Committee especially wants to be aware of whether this change will “disruptively segregate people who once looked the same,” since quality outcomes are tied to pay-for-performance and otherthings. She suggested timely pilots to highlight vulnerabilities that should be addressed in advance. Dr. Tang reiterated an earlier pointthat the delay presents an opportunity to rethink how to use standards with clinical concepts, and to look at the potential impact on coding. Dr. Cohen asked about comparability ratios to enable trend analysis to continue; Ms. Greenberg cited work by NCHS in that area in the past, and said it is no longer possible to do comparability ratios with data from the National Hospital Discharge Survey because most of the data received is already coded.. General equivalence maps are used now.

Dr. Carr noted the importance of educating coders about quality measuresand the codes that drive quality evaluation, so that coders understand the importance of appropriate specificity. Dr. Warren noted that the EHR implementers in organizations will be impacted by the transition to ICD-10 code sets, and this role often is not performed by the physician. She suggested the need for best practices to help people manage the standardized terminologies that are coming out, so that the population health, billing, surveys, and quality derivatives are correct. Dr. Eisenberg agreed.

Mapping between ICD (9-CM and 10-CM) and SNOMED CT — Vivian Auld, National Library of Medicine (NLM) (slides)

The NLM is the distributor of HIPAA classifications, code sets, and terminologies required for EHR certification within UMLS andthe designated HHS coordinating body for clinical terminologies, including developing relevantmappings. The terminologies include LOINC, RxNorm, and SNOMED CT. Ms. Auld focused her presentation on mappings from SNOMED CT to ICD-9-CM, to ICD-10, and to ICD-10-CM; and from ICD-9-CM to SNOMED CT. The maps are designed toaddress specific problems people are encountering rather than trying to map “everything.” (See slides for technical details.)

There is already an equivalence map available from the International Health Terminology Standard Development Organization (IHTSDO) from SNOMED CT to ICD-9-CM; but it has been pulled back on the advice of NLM. When the new date for ICD-10-CM is set, they will decide whether the ICD-9-CM map needs to be maintained. In addition, NLM has synonymous mappings in the UMLS Metathesaurus; and in April 2012 there will be a trial map for evaluation from heavily used ICD-9-CM codes to SNOMED CT. Another issue is the use of SNOMED CT to generate encounter diagnoses in ICD-10-CM or ICD-9-CM for billing and statistics.

On February 29, NLM published a new map from SNOMED CT to ICD-10-CM, which is posted on the NLM site. The map leverages international work, including work by IHTSDO, WHO, and the map developed by the UK National Health Service. It is meant to be embedded in the EHR for real-time, interactive ICD code generation, and to assist coding professionals by suggesting ICD codes based on SNOMED CT-encoded problem list entries. Ms. Auld stressed that“it is not intended just to hand to coders,” which she said “is not a good idea.” She added that IHTSDO is looking into putting in place a mapping service so that people do not have to handle map maintenance through an expensive contract process. She outlined the priorities for phase 1 work for the ICD-10 and ICD-10-CM maps and the SNOMED CT concepts that are in scope for mapping?about one third of the total.

Finally, Ms. Auld gave an overview of a new tool called I-MAGIC, developed by NLM, with a flowchart showing its logic and several screenshots.

Discussion

The presentation stimulated many comments and questions from NCVHS members. (See the transcript for the full scope of the discussion.) Dr. Green expressed frustration with the delay in implementing an updated classification system (ICD-10-CM), hailed the opportunity to use SNOMED, and wondered if it is time to rethink what the future of ICD is and how we get to it. Dr. Walker proposed that “the endgame is SNOMED.” Dr. Warren notedthat the expansion of knowledge will make it necessary to grapple with how to deal with the expansion in EHRs and provide new information at the point of care.

Ms. Greenberg celebrated the progress being made in mapping between SNOMED and ICD-10 and developing an electronic tool, and she thanked NLM and Ms. Auld. She pointed out the non-clinical and non-billing uses of ICD, including research, epidemiology, health statistics, and the capacity for international comparisons. Dr. Carr noted that I-MAGIC is the presentation layer; the relevant ICD coding is mapped behind the scenes where physicians don’t have to deal with it. Dr. Tang noted that the concepts in the new tool were written by health professionals, so physicians can relate to it. Dr. Suarez said billing will continue to use ICD while EHRs move to SNOMED CT;he asked about piloting and testing of these tools for billing purposes. Ms. Auld said at present there are no resources and thus no plans for pilot testing, but they are looking at that with ONC and NCHS. She reminded the group that I-MAGIC was just released a day ago; the full map will be available in June. It is standardized, and will be maintained by the federal government. Dr. Suarez added that it should be incorporated into EHRs, and perhaps should become a meaningful use requirement.

Members returned to the issue of the ICD-10 code set delay, and Dr. Tang again stressed that if this happens, it will be important for NCVHS to help take advantage of the delay to “mind-shift to the future,” such as by “coating it in clinical terminology.” Dr. Suarez noted that the Subcommittee on Standards will hold a hearing in June on the status of 5010 and the ICD-10 code sets, giving a chance to engage industry and help prepare to meetthe timeline. Ms. Doo suggested having specific questions on what is being done with simulations, labs, crosswalks, and tools.

The group considered the possible reasons why the Secretary was persuaded to consider delaying implementation. Mr. Scanlon said the cumulative occurrence of many system-change requirements at once made it daunting for providers. Dr. Walker called attention to the particular difficulties for small practices. Dr. Francis expressed regretthat no interrelationship seems to be perceived among all the changes and initiatives, rather than understanding how they relate and can be coordinated.

The Committee then recessed into break-out sessions.

–Day Two–

Dr. Carr announced that because Dr. Warren’s term ends in June (along with five other NCVHS members), she has stepped into the emeritus position and will be replaced by Mr. Soonthornsima as co-Chair of the Subcommittee on Standards.

Action on Standards Letters and Letter on ICD-10 code sets — Dr. Suarez, Dr. Carr

Dr. Suarez presented the three standards letters for action, in each case describingany changes made in response to Committee discussion the previous day.

  1. The Committee unanimously passed a motion approving the letter on ACA 10109.
  2. The Committee unanimously passed a motion approving the letter on the maintenance process for standards and operating rules.
  3. Following discussion and a few more revisions, the Committee unanimously passed a motion approving the letter on claims attachments.

Dr. Carr then presented a draft letter to the Secretary on ICD-10 code sets, which she read aloud. There was considerable discussion (see transcript), resulting in revisions to the letter. Dr. Carr said the letter would berevised at lunch and presented to the Committee for a vote thereafter.

Subcommittee Reports, Strategic Plans and Next Steps

  • Subcommittee on Quality — Dr. Tang

Dr. Tang summarized the key messages in the hearing on “Measures that Matter to Consumers,”which the Subcommittee hosted on February 28-29. The bottom line was that even the most motivated, knowledgeable, and persistent consumer can’t find information useful for choosing physicians and hospitals. This is because the information is too complex and the language used to convey it is impenetrable. The lack of standardization and presence of proprietary interests add barriers. Measures that matter to consumers need to apply to them individually. In addition, movement in population health status requires community-level data, as illustrated by the work going on inRochester, NY. Health care professionals need to do a better job of engaging and activating patients, and they need incentives to do so. To support health care reform, patients and payers need standardized, understandable, useful measures that matter and tools to help them understand and interpret the information. The Subcommittee developed recommendations based on these findings, and will present them in a letter to the Secretary. The major recommendation is to make the consumer information in federally-supported insurance exchanges comprehensive and user-friendly and involve consumers in design and testing to achieve this goal and develop next-generation measures that matter to consumers.

Dr. Carr noted that the Subcommittee used an excellent meeting structure, with panel testimony and discussion on day one, followed by a half-day for the Subcommittee to deliberate and process the inputs.

Dr. Cohen expressed hope that in addition to the letter to the Secretary, the Subcommittee would produce a report that captures the richness of the testimony and suggests plans for the future.

  • Subcommittee on Population Health — Dr. Green

Besides planning its impending workshop on SES, the Subcommittee discussed the dissemination of NCVHS reports and agreed that there is a “performance gap” between the quality of the Committee’s work products and the way they are disseminated. Members would like to see, and help create, a standard set of practices in which target audiences are identified for every product and a multi-faceted dissemination system is in place to get the products to their intended audiences. The Subcommittee also discussed next steps, identifying eight possibilities that cluster around communities as learning systems for health. Dr. Carr noted the new opportunity to work on population health standards with the Subcommittee on Standards, a project that Dr. Suarez will introduce (below). Ms. Jackson later asked all NCVHS members to contribute to and use the dissemination template that Ms. Kloss developed, which staff will once again send around.

  • Subcommittee on Privacy, Confidentiality and Security — Dr. Francis

On April 17-18, the Subcommittee will host a hearing on next steps for community data use. It will focus on 1) what is known about possible modes of governance that go beyond data use agreements; 2) dealing with small areaissues; and 3) ways to communicate to the public about data uses. The second day will be an opportunity for Subcommittee members and staff to process what they heard.

  • Subcommittee on Standards — Dr. Suarez

The Subcommittee’s agenda for the coming year includes thefollowing items, among others:

  • Completing the process for identifying and recommending a coordinating authoring entity of the operating rules for the remaining transactions;
  • Developing a strategy for section 10109 next steps;
  • Holding a hearing on 5010;
  • Holding a separate hearing on ICD-10 code sets;
  • Working on the 11th HIPAA report to Congress; and
  • Convening a hearing jointly with Subcommittee on Population Health on the status of public health data standards.

On the final subject, Dr. Green challenged the common assumption that public health is something separate from individual health. He called thisa century-old fallacy that needs to be healed, as addressed in a forthcoming IOM report. Dr. Cohen noted the importance of framing public health broadly to embody quality of life and wellbeing, as per the WHO definition of health. Ms. Greenberg noted that the 60th Anniversary Symposium participants were eloquent on this point; and Dr. Mays added that Healthy People 2020 adopts the same perspective.

ICD-10 code set Letter — Dr. Carr

Dr. Carr returned to the draft letter on ICD-10 code sets and reviewed the areas of agreement within the Committee.The majority of members, by a show of hands, supported limiting the delay to one year. Following this informal vote, there was unanimous agreement that the letter should state that ICD-10 code sets should be implemented “as soon as possible.”

Following a lunch break, and with a quorum still present, the Committee resumed discussion of the draft letter. In response to further discussion over lunch, Dr. Carr asked members to vote on the addition of “and no later than one year” to the statement about timing recorded above. Seven members, a majority, voted in favor of this addition; one voted against it; and two abstained.

The letter was referred to the Executive Subcommittee for final revision and action. (The final letter to the Secretary is posted on the NCVHS website.)

CMS Line of Service for Information Resources — Todd Park, Moderator

Dr. Carr welcomed HHS Chief Technology Officer Todd Park and his colleagues for a special session. She expressed excitement about the opportunity to work together in the many areas of alignment between NCVHS and these HHS initiatives.

  • Introduction — Mr. Park

HHS is engaged in a large-scale effort to unleash the power of data and information to improve American health and health care. It is following the example of the National Oceanic and Atmospheric Administration in not justcollecting data but making data accessible to users in usable forms, while respecting privacy and confidentiality. This includes doing mash-ups, building tools, providing services, and offering capabilities to help consumers and patients control their health and make informed decisions. These efforts are mobilizing multiple tool developers and data users to maximize the social return on data.

Noting the “absolute explosion” of innovation in the U.S. today,Mr. Park said HHS had found that 95 percent of the innovators that could develop usable products and services with HHS data did not know of the data’s existence. The Department is engaged in activities to change that, and is “doubling down on health data initiatives” such as its annual Health Datapalooza (next on June 5-6, 2012 at the D.C. Convention Center) and healthdata.gov (which is undergoing a major upgrade to improve usability, under the leadership of Dave Forrest). Every HHS agency has been asked to publish a data access and use improvement plan every six months.Mr. Park hailed the partnership with NCVHS to maximize social return on health data through the new NCVHS Workgroup on health data access and use.

Turning to today’s panel, he stated the Department’s belief that over the long term, information and data from CMS should be considered a line of business on the same level as Medicare and Medicaid?a national treasury thatcan be a significant catalyst for improving wellbeing in the U.S. The idea of thinking of the proactive provision of data innovation products as at the core of what CMS does for the country, and of making that a priority, ha gotten a lot of support at CMS, at HHS, and broadly across government.

  • The Plan?Niall Brennan, Director, Policy and Data Analysis, CMS (slides)

Mr. Brennan gave an overview of the scope of CMS services, beneficiaries, and data holdings. The data sources are expanding and extend well beyond claims data. The ACA has made CMS an active purchaser of health care that is expected to drive innovation. CMS takes seriously its commitment to maintaining and respecting beneficiary privacy in all efforts. Its traditional approaches, due to multiple legal and regulatory requirements, have meant that “the health care system is not benefiting from optimal use of CMS data.” After soliciting input from key data stakeholders, the agency has a better idea of the needs of various external data users, including states, providers, and researchers, as well as users inside CMS.

The agency has made significant progress in data dissemination over the last year, such as through actions that help enable patient-centered care in a fee-for-service environment and the use of Medicare data for performance measurement. It is also working to help create additional non-beneficiary data sets for multiple uses in quality improvement and other things. He characterized these activities as “the leading edge of a new wave of CMS data uses,” and described some of the technical work, analytics, and policy steps going on to make it all possible while protecting individual privacy (e.g., by using a data enclave). The anticipated benefits include making CMS into a data-driven, value-based purchaser; making the health care marketplace more transparent to help beneficiaries make the right decisions; helping providers maximize the value delivered; supporting community and state efforts to identify variations in health care delivery and take action to support health and health care improvement; and helping researchers contribute to these efforts. It all depends, he said, on using analytics to unlock data and convert the data into information. He concluded with a series of slides showing ways in which CMS is already supporting data-driven decision making.

NCVHS Reactor — Dr. Cohen

Dr. Cohen focused on state and community data uses, noting that communities and individual consumers should be added to CMS’ list of target populations and data users. He observed that the two levels of population health data?aggregated data and individual-level data?have distinct users and content.

With respect to aggregate data, he encouraged CMS as it develops its product lines to think about how to build on existing resources?for example, existing web-based data query systems. Further, when addressing public and community health,CMS data should be regarded as “one piece of the puzzle” that needs to be integrated into a larger context. Dr. Cohen suggested that CMS develop a program to work with states to help them use and develop their existing capacity and infrastructure to incorporate newly liberated data. He also encouraged thinking in terms of public-private partnerships, to develop the web-based query systems being used for community needs assessment. The ACA and IRS requirement that non-profit hospitals do community needs assessment is an opportunity to think about partnering with existing data entities that are generating this information.

Regarding individual-level data, Dr. Cohen praised the idea of a data enclave and suggested that the strategy be integrated with the enclaves of other federal agencies to provide access to all federal data. Massachusetts is working hard on its all-payer claims database, and the state agency regrets that current regulations prevent access to state-level de-identified Medicare and/or Medicaid data. He saluted CMS for rethinking the question of access to primarily de-identified data for general policy development.

Dr. Carr said the second NCVHS reactor, Dr. Scanlon, would respond after the panelists’ presentations.

Data Users and Perspectives Panel

  • Kerry Hicks, HealthGrades (prepared remarks)

HealthGrades helps consumers make informed decisions about doctors and hospitals, relying extensively on CMS data to build its tools. Its website has more than 200 million unique users and is expected to grow by 30 percenta year; and HealthGrades works with some 800 U.S. hospitals. Mr. Hicks observed that both for-profit and not-for-profit organizations can use government data for public benefit. After noting the wide range of quality among hospitals and the number of lives that could be saved by helping patients choose the good ones, he described the decision support resources provided by HealthGrades. The company conducts a lot of research to analyze usage. There is considerable consumer demand for meaningful comparative information.

Mr. Hicks noted that health care information is growing at four times the rate of the Internet as a whole. As a CMS partner, HealthGrades will help develop and implement standardized data platforms and delivery mechanisms to make data more accessible. He applauded recent federal data initiatives and suggested what data would be most useful to stakeholders. The data use agreement now in place for HCUP restricts access to organizations viewed asconducting “pure research”; if others were allowed access, they could explore ways to make the data more useful to the general public. Data should not be limited to purely academic endeavors, he said; and physician-specific information would be more useful to consumers. He concluded that “the application of market principles, meaning a willing buyer and a willing seller, coupled with cost and quality transparency, will inevitably lead to an efficient marketplace.” While that is years away, he said, it is getting closer, and we can expect exponential increases in the use of data over the next decade.

Dr. Carr noted the relevance of Mr. Hicks’ presentation to the recent Subcommittee on Quality hearing on measures that matter to consumers, with its emphasis on using the information available today. At her request, he described how HealthGrades involves consumers in developing its website.

  • Brian Kelly, MD, Aetna (slides)

Dr. Kelly runs informatics, data governance and data sharing at Aetna. He expressed delight at what CMS is doing, because data sharing is so important to making quality health care better and more affordable and accessible. CMS’s “big data” can transform health care, given a new paradigm around data sharing with appropriate public policies and consumer education. Aetna, “the commercial version of what Medicare is becoming,” serves more than 18 million members and has 73 million people in its integrated database, 10 million of whom have a personal health record automatically supplied with Aetna’s data. It is powered by a clinical support system.

Aetna interacts with more than a million health care professionals every year, including 3,000 nurses. It has acquired Medicity, a health information insurance exchange, and uses clinical decision support to identify and route gaps in care. It has 10 ACOs under contract, 20 letters of intent, and 50 hospitals in the pipeline. Dr. Kelly expects these systems of care to transform health care by aligning incentives. All of this requires “massivedata sharing” and realization of the concept of an information commons, which Aetna is working to support.

He concluded by describing FDA’s Mini-Sentinel Project, in which Aetna participates, as an example of how data can transform clinical research. It is a drug safety program and a paradigm of how government and the private sector can work together. FDA sends Aetna a query to look at ICD-9-CM or diagnosis codes for a set of conditions, and Aetna can run the query across its members in 24 hours at virtually no cost, searching for evidence of sideeffects, and report back to FDA. He praised what CMS is doing, and pointed to some Medicare data use policies regarding Medicare Advantage that need to be revised. Finally, he urged an effort to educate consumers and policymakers on the importance and benefits of data sharing.

  • Harley Geiger, JD, Center for Democracy and Technology (slides)

The Center for Democracy and Technology (CDT) is a policy-focused organization. Mr. Geiger talked about the underlying data architecture of many secondary use programs, including those supported by CMS data. CDT strongly supports such programs but points out that their success depends on patients’ providing full and accurate information to their providers. This in turn depends on trust in the privacy and confidentiality protections for their data.

There is a common and growing practice of using centralized, government-maintained databases to collect health claims for analysis and subsequent release to data users. However, centralized architecture can exacerbate privacy and security problems and increase the risk and severity of data breaches, due to the large volume of data in each database, the practice of making multiple copies, and the creep of data uses for purposes other than the intended ones. This erodes public trust. The large databases are expensive to maintain, among other problems; and this is a poor long-term strategy. For these reasons, CDT hopes that HHS will consider decentralized systems as alternatives where appropriate. And whether the data are centralized or decentralized, privacy and security policies need to wrap the architecture. Decentralized systems give researchers and agencies the results oftheir analyses but not copies of the raw data. Thus, they reduce the risk of data breach, are aligned with public privacy expectations, ease plans’ proprietary concerns, minimize data transfer, and leverage existing infrastructure and expertise.

Mr. Geiger contrasted distributed query systems and distributed access systems. In the former, researchers and agencies write the code and submit it to data holders, who analyze their data and submit results. In the latter, the researcher or agency accesses data while it is still held by the data source and executes the code or query behind the data source’s firewall, while the data source does not analyze the data and return the results. CDT recommends that government keep the regulatory language flexible enough to preserve the possibility of non-centralized models, and that government explore distributed solutions for secondary use programs, including testing them on a population scale?for example, for the types of secondary uses currently being conducted on all-payer claims databases.

  • Bill Davenhall, esri (slides and prepared remarks)

Esri develops the software that states and HHS agencies use to make data maps. He showed a slide of a National Health and Social Data Ecosystem, showing several layers of information representing different data perspectives on a given geographic area. The Ecosystem uses technology that links multiple geographically relevant data such as models of health, transportation, and water, thus providing “a way to think about how your world is connected.” Besides producing maps, esri/the Ecosystem provides a framework for thinking and answering questions and for seeing the salient features of complex data and the connections among the many dimensions and determinants of health, to maximize data usability.

Mr. Davenhall stressed that “CMS represents our best hope of helping the entire health and social ecosystem understand how our health system actually works or…doesn’t work….” The issue is how to make data actionable. The first step is to assure data quality; the next is to get the data “GIS-ready” so they are geographically useful. He noted the benefits of access to granular data. He hailed the steps HHS and CMS are taking to maximize data access and use and to add value to data, and he encouraged HHS to also help end-users know of the information’s availability and use the data intelligently.

  • Joshua Rosenthal, PhD, RowdMap (slides)

Dr. Rosenthal observed that the federal government is successfully causing a shift from fee-for- service to pay-for-performance and thereby transforming insurance companies into participants in the health care system. The shift requires that all participants be data-driven, which in turn requires the availability of system-wide information (“interpreted data”). There are two types of issues to deal with: research and quality control, involvingsecurity, privacy, and automation; and reimbursement, which involves coherency, usability and interpretive access. It is important to solve today’s problems with the technical foundation for tomorrow’s business paradigm, and Dr. Rosenthal said HHS and CMS are clearly doing this. He described one approach to consider, a cloud-based data explorer.

He referred NCVHS members to his detailed slides, which among other things outline a series of recommended steps, starting with creating an online learning center. He encouraged HHS/CMS to engage members of the public outside the health care industry to explode innovation. He noted that this is already starting to happen on a fairly large scale?e.g. with “the Harvard and MIT kids.” Large numbers of small files with interpretive difficulty need to be put into a structure with business-related meaning, using the standardized way of “looking at stuff” that has already been created, supported by a learning center. He noted the importance for data users of being able to compare themselves to their peers, and the importance of tying innovation to “meaningful business questions.” The infrastructure now being constructed will allow people to do these things, once HHS/CMS “puts a couple of more chips on the table.” He reiterated the importance of providing an interpretive framework to enhance the meaning of the information and users’ ability to use it. This means taxonomy (as outlined in his slides), “a decent-looking portal,” and appropriate incentives.

NCVHS Reactor — Dr. Scanlon

Dr. Scanlon described his strong positive response to these presentations and contrasted the emerging scene with the data he had to work with across decades of policy-oriented health services research. Noting the problems with untimely data when advising Congress, he hailed the fact that data are being brought closer to real time. Until now, health care reform efforts have highlighted the necessity of “doing something positive” to improve efficiency, but the limitations of information have made it a challenge to make well-informed decisions.

Information is needed at three levels: for policy and program management, for clinical decisions and care, and to support decision-making and health management by consumers and patients. The first level requires aggregate-level data, and in that regard the new steps to merge data to power understanding and appropriate policy are very positive. They should go even further; for example, Medicare policies are based on the 1983 DRG-PPS system, which should be refined; and data access and sharing across federal agencies should be made easier. Dr. Scanlon also encouraged CMS to think of providing users with technical assistance as part of its line of business. He noted that the work with the ACOs seems “exactly the right thing” in the clinical area. Regarding providing patients with useful information, he stressed the importance of transparency, so everyone knows how dataare being used.

Adding that all data sources should be encouraged to share their data, he saluted the private companies, including Aetna and Kaiser Permanente that are sharing their claims data. This can contribute to a better understanding of what is happening locally.

Discussion

After expressing his enthusiasm for these initiatives, andnotably for their potential benefits for consumers and patients, Dr. Tang asked how data maintenance would be handled and how data collection could evolve in response to new needs and uses. Characterizing the HHS data universe as “a highly diverse ecosystem,” Mr. Park stressed the need for ongoing dialog between data owners and users, to handle both maintenance and collection questions in response to varying needs among the users and databases. This has begun to happen, he said, as the health ecosystem becomes a public space in which suppliers and users are becoming intertwined. The collection of new data is also happening, he said, citing HospitalCompare as an example. The idea is for the investments in data set evolution to be informed by intelligence about generating value. He pointed out that HHS is just one supplier; “this is an American initiative, not an HHS initiative,” and others are starting to join in, such as the states of New York and Louisiana and Gallup Healthways. A good example is the unanticipated scale of consumer use of the VA/DoD’s Blue Button and the way word of its use has stimulated interest by private sector data holders.

Bob Kaplan from NIH noted the risks of “indicatoritis” and the need to harmonize indicators and create summary measures of population health. Mr. Park agreed that both a wealth of indicators and summary measures are needed. A goal of data liberation is to accelerate R&D on what truly meaningful measures are, allowing for the fact that meaning can vary for different users and situations. He cited the breakthroughs made possible by the Section 10332 provision and predicted a “significant quickening of our understanding of what really works and what makes sense to a doctor and a patient,” especially once there is “access to the underlying molecules” needed for research. Data liberation can significantly accelerate progress on that front.

In response to a query from Mr. Soonthornsima, Mr. Brennan described the criteria for the “qualified entities” that will have access to data on more meaningful performance measures. He added that groups of entities can meet the criteria through partnerships and collaboration.

Noting the NCVHS finding that communities want to take responsibility for their own health and that the country is missing a critical infrastructure, Dr. Green said he didn’t see community listed as a data user. He asked about the organizational framework and analytic workforce for making this possible for communities. Mr. Davenhall agreed that most community health advocacy groups have had to work “in murkiness” and need “a Blue Button for communities.” Mr. Park noted that the Health Data Initiative began as the Community Health Data Initiative; and the resulting Health Indicators Warehouse amalgamated 1200 public health performance metrics, many of them localized. HHS is getting feedback on how to improve the database, and will add 53 indicators in March. Also, his team is envisioning a “Choose Your Own Community” tool that would enable people to define their own area of interest, for which CMS would calculate metrics (suppressing data if there are too few data points or the statistics aren’t valid). He added that to improve the value of the data, CMS also has set the goal of presenting preliminary community health performance data with a timelag of only one quarter. In general, feedback from data users about what they could do to improve health if they had particular data is the driver; and he encouraged NCVHS to help make this dialog happen.

Dr. Kelly added that he expects the emergence of ACOs, which are usually local structures, to accelerate this process. The important thing is to align the incentives to empower people at the community level. Dr. Rosenthal commented that the marketplace comes into play, as well; and he cautioned that “letting the market take over” carries some risks and must be handled intelligently. Dr. Park agreed with Dr. Green that there are workforce issues in these visions; however, he predicted that supply would follow demand on this. In the short run, the supply of informatics experts will be dwarfed by the rising demand for their expertise.

Dr. Suarez noted the challenges of new data collection and databases, and wondered how we can ensure consistency and harmonization among the data sources to facilitate analysis and use. Mr. Brennan and responded that data liberation and sharing will gradually and naturally promote standardization and harmonization. Dr. Rosenthal added that the basic structure must be in place, and taxonomy and structure must be transparent.

Public Comment:

Lucas Tramontuzzi, Chief Data Officer, Louisiana Dept. of Health and Hospitals

Mr. Tramontuzzi described his state’s perspective on using CMS and HHS data and its challenges. Because of workforce issues, the state needs to work with private and public partners to figure out how to address its challenges. He stressed the need to minimize the operational barriers to data access with standard formats and timely data. It needs assistance with how to ensure confidentiality for its residents. The state needs to be allowed flexibility in its uses of data because it is difficult to anticipate future research questions. It needs to be able to bring patient-level nursing home data into its emergency management system so it knows whom to evacuate in an emergency. It also needs better cooperation with other federal agencies, including Social Security, to manage eligibility. The state would like to unify all Blue Button data into a single button for state residents. Finally, he urged the Committee to “be agents of change.”

Wrap-up — Dr. Carr

Dr. Carr observed that in 2002, NCVHS published its vision, Shaping a Health Statistics Vision for the 21st Century; and a decade later, that vision is becoming a reality. She thanked Mr. Park and the panelists for their illuminating and stimulating presentations, which have inspired NCVHS members and sparked their imagination. The Committee looks forward to ongoing collaboration.She then adjourned the meeting.

I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.

/s/                                                                            June 21, 2012

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Chair                                                                           Date