Department of Health and Human Services
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
November 27-28, 2007
Hilton Embassy Row Hotel
Washington, D.C.
Meeting Minutes
The National Committee on Vital and Health Statistics was convened on November 27-28, 2007, at the Hilton Embassy Row Hotel in Washington, D.C. The meeting was open to the public. Present:
Committee members
- Simon P. Cohn, M.D., M.P.H., Chair
- Jeffrey Blair, M.B.A.
- Justine M.Carr, M.D.
- Leslie Pickering Francis, J.D., Ph.D.
- Larry A. Green, M.D.
- John P. Houston, J.D.
- Garland Land, M.P.H.
- Carol J. McCall, F.S.A., M.A.A.A.
- J. Marc Overhage, M.D., Ph.D. (by phone)
- Harry Reynolds
- Mark A. Rothstein, J.D.
- William J. Scanlon, Ph.D.
- Donald M. Steinwachs, Ph.D.
- C. Eugene Steuerle, Ph.D.
- Paul Tang, M.D.
- Kevin C. Vigilante, M.D., M.P.H. (by phone)
- Judith Warren, Ph.D, R.N.
Staff and liaisons
- Marjorie Greenberg, NCHS/CDC, Executive Secretary
- James Scanlon, ASPE, Executive Staff Director
- Karen Trudel, CMS liaison
- Steve Steindel, Ph.D., CDC liaison
- Debbie Jackson, NCHS
Others
- Katherine Jones, NCHS
- Henry Heffernan, NIH
- Sheila Dwyer, AOA
- Dan Rode, AHIMA
- Carol Bickford, ANA
- Kristine Anderson, Booz Allen Hamilton
- Douglas Boenning, ASPE
- Paul Gammill, HHS
- Miryam Granthon, HHS
- Nancy Ferris, 1105 Government
- Maria Friedman, RxHub
- John Rayburn, Healthcare Leadership Council
- Michael DeCarlo, BlueCross BlueShield Assn.
- Frank Kyle, Amer. Dental Assn.
- Edna Paisano, IHS
- Adam Birnbaum, BlueCross BlueShield Assn.
- Marilyn Zugmund Luke, AHIP
- Chantal Werzale
- Paul Youket, 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 approved at the meeting, see “Reports and Recommendations.”
EXECUTIVE SUMMARY
The centerpiece of this meeting was the review, revision, and ultimate approval of the report on Enhanced Protections for Uses of Health Data, which was developed in recent months by the NCVHS ad hoc Workgroup on Secondary Data Uses. The project was undertaken at the request of the Department and the Office of the National Coordinator that the Committee develop a conceptual and policy framework to balance the risks, benefits, obligations and protections related to various uses of health data, with special attention to the quality use case. The major goal of the report is to strike the optimal balance between national benefits from the uses of health data, on the one hand, and the protection of individual privacy, on the other. The Committee also discussed the latest iteration of a draft letter on privacy of sensitive information accessible via the Nationwide Health Information Network (NHIN) for purposes of treatment, and it received several briefings.
ACTIONS
The Committee passed a motion approving the report and recommendations on Enhanced Protections for Uses of Health Data. After wordsmithing and a few final refinements, the report will be finalized by the Executive Subcommittee.
DEPARTMENT UPDATE
- Data Council—Mr. Scanlon
- CMS Update—Ms. Trudel
Mr. Scanlon briefed the Committee on new developments related to policy priorities, legislative activities, and the budget. Health IT is expected to be a priority in the second session of the 110th Congress. A final decision has not yet been made on the budget for FY2008. Among several recent and ongoing projects, the Data Council has found that EHR penetration rates are too low and unsystematic to support national sampling. At the end of FY07, the Data Council supported a survey of preparedness in emergency departments and an assessment of PHRs in Medicare pilots. It will be coming to NCVHS for advice on this effort as it moves along.
Ms. Trudel briefed the Committee on e-prescribing, the NPI, and HIPAA security. The comment period for the e-prescribing proposed rule ends on January 15. CMS is asking for comments on the idea of a “fill” standard that would notify a physician that a prescription was picked up. There are questions about the business case and consumers’ views on this option. On the NPI, the May 23, 2008 deadline is approaching. CMS is taking steps to help move providers toward compliance. On HIPAA security, CMS is developing lessons learned and will post them on the CMS Website to help educate covered entities.
ENHANCED PROTECTIONS FOR USES OF HEALTH DATA —Dr. Cohn, Dr. Carr, and Mr. Reynolds
As noted, the Committee spent the better part of the two-day meeting discussing and revising this draft report. In his introduction, Dr. Cohn said the public comment period in October had proved very useful. In all, the ad hoc Workgroup heard from nearly 60 testifiers during eight days of hearings and received around 1,000 comments. After many hours of discussion, production of a revised version, and review of that version, the Committee approved the report and recommendations, subject to minor revisions and final Executive Subcommittee approval.[1]
SUBCOMMITTEE ON PRIVACY AND CONFIDENTIALITY REPORT UPDATE —Mr. Rothstein
This letter, which has been in development since April 2007, addresses what abilities individuals should have to control their most sensitive health information when that information is disclosed for treatment purposes via the NHIN. The present discussion gave non-Subcommittee members a chance to give guidance on the concepts proposed in the letter. The Subcommittee on Privacy and Confidentiality hopes to present a final version for Committee review and approval at the February 2008 meeting.
HEALTH I.T. TO SUPPORT THE PATIENT MEDICAL HOME —Robert Phillips, MD, and Michael Klinkman, MD (see slides)
Drs. Phillips and Klinkman reported on a conference, “Harmonizing Data Standards for Primary Care,” held by the Robert Graham Center with the support of AHRQ. Dr. Phillips said it was about “how to empower patients and their medical home with health information technology.” The idea was to have a conversation with people involved in primary care and standards about opportunities to affect the development of standards and harmonize HIT, information flow and standards. The medical home idea is gaining currency, and it requires a strong information platform. The standards process has neglected primary care, which needs its own information model, with information organized into episodes of care. Simply implementing current HIT tools will not help clinicians achieve continuing improvements in primary care.
The speakers presented an information model of the care process, based on the ICPC, a classification that includes 17 chapters for use by primary care physicians, organized into episodes. The ICPC incorporates patient voices, accommodates social problems, and can track processes of care over time, and it maps to standard terminologies and classifications. Dr. Klinkman said people at the conference reached an understanding about how classifications and terminologies could fit together to support primary care. Dr. Phillips outlined seven ways in which NCVHS can help. In the discussion period, several members supported the proposition that NCVHS should play a role in supporting this endeavor.
BRIEFING FROM THE OFFICE OF THE NATIONAL COORDINATOR —Dr. Loonsk (see slides)
Dr. Loonsk updated the Committee on ONC’s work on the standards front, the NHIN, and trial implementations. He described the process for developing standards for interoperability, confidentiality and security, and functionality, and noted that testable implementation specifications are necessary to establish interoperability. He showed the Committee a detailed “coordinated timeline” for moving through the developmental stages of the NHIN, from 2006 to 2011, along with a roadmap of priorities and use cases. Finally, he outlined the plans for and progress toward trial implementations. A goal is set to be in production by 2010.
SUBCOMMITTEE AND WORKGROUP REPORTS
(See brief summaries below.)
DETAILED SUMMARY
CALL TO ORDER, WELCOME, INTRODUCTIONS, REVIEW OF AGENDA
Dr. Cohn called the meeting to order and asked all present to introduce themselves. He congratulated the Committee for its productivity over the previous year and briefly reviewed highlights. He noted the impact of the Committee’s advice on various areas of Departmental activity, including e-prescribing standards and NHIN privacy and confidentiality.
He called special attention to the considerable work that went into the document that is the centerpiece of this meeting, the report on Enhanced Protections for Uses of Health Data. The project was undertaken at the request of the Department and the Office of the National Coordinator, to develop a conceptual and policy framework to balance the risks, benefits, obligations and protections related to various uses of health data, with special attention to the quality use case. He thanked the co-vice-chairs of the ad hoc Workgroup, Dr. Carr and Mr. Reynolds, consultant Margret Amatayakul, and the other participants (members, staff and liaisons) for their service, and the group responded with applause. Later, Mr. Reynolds acknowledged Dr. Cohn’s leadership as chair of the Workgroup, and he was applauded, as well. Dr. Cohn observed that this special project is an example of the Committee’s ability to rapidly mobilize around a task of importance to the Department and to leverage the Committee’s unique expertise across a range of areas.
DEPARTMENT UPDATE
- Data Council—Mr. Scanlon
Mr. Scanlon briefed the Committee on new developments related to policy priorities, legislative developments, and the budget. Virtually all of the Secretary’s policy priorities, which are posted on the HHS Website, rely on data and information technology. He gave members the updated version of the Department’s strategic plan for the next five years (also on the web), which has four large goals. On the legislative front, several health IT bills have been introduced but nothing has yet been passed. HIT is expected to be a priority in the second session of the 110th Congress. Similarly, a final decision has not yet been made on the budget for FY2008, and there is a continuing resolution through mid-December. This restricts the Department to past spending and prevents it from starting any new projects. Mr. Scanlon said they may not know about resources until February of 2008.
The Data Council has been looking at contingencies, depending on budget levels, with respect to proposals from the agencies related to health IT, statistics, and population data. In December it will look at an assessment of follow-up for Hurricane Katrina evacuees, conducted by Ron Kessler at Harvard Medical School. The Data Council is also looking at the capabilities of HHS agencies for state and local data. In addition, the Council held a workshop at NCHS earlier this year on the potential of EHRs for public health statistics, and it is now looking at current penetration and capability of EHRs. Its findings so far are that the penetration rate of EHRs is too low and unsystematic to support national sampling. However, it will continue to explore ways to use the depth and richness of EHR information in some areas. The National Library of Medicine has offered its grantees for possible work on this in 2008.
At the end of FY07, the Data Council began a survey of preparedness in emergency departments and an assessment of PHRs in Medicare pilots. It will be coming to NCVHS for advice on this effort as it moves along. It also initiated an assessment of HIT capabilities and information exchange in the health safety net. More resources are needed to pursue additional possibilities in this area. One relates to modeling health and human services capabilities; another is a 5-year demonstration of EHRs in an ambulatory setting; and another is looking at how to measure the broad health and economic impact of illness. The VA has asked for help on its pilot and evaluation of information exchange between the VA and veterans transitioning out of the military system and into private health care. Some demos are already under way. Finally, a study of the possible use of EHR systems for public health activities including drug safety monitoring is being considered.
In the discussion period, NCVHS members and staff expressed particular interest in the EHR demonstration in ambulatory settings, state initiatives, and the study of the economic impact of illness and disability.
Mr. Scanlon and Ms. Greenberg then commented on the process to replace the six NCVHS members, including the Chair, whose terms expire on June 1, 2008 (having been extended from December 1, 2007). They invited suggestions from members. Ms. Greenberg reminded subcommittees and workgroups to keep this transition in mind as they plan their near-term work. Dr. Cohn added that the Executive Subcommittee will be working on transition planning.
Ms. Greenberg noted that the Committee will celebrate its 60th anniversary in 2009, and it is time to start planning for that. All current members will be invited to participate in special 60th anniversary events.
- CMS Update—Ms. Trudel
Ms. Trudel briefed the Committee on e-prescribing, the NPI, and HIPAA security. On the first, the proposed rule was published on November 16 and the comment period will end on January 15. A one-year implementation period is proposed. CMS is proposing the adoption of standards for the formulary and benefits and medication history. It is intended to support economical prescribing decisions and increase the uptake of generics. Medication history information is intended to reduce adverse drug events. CMS is asking for comments on the idea of a “fill” standard that would notify a physician that a prescription was picked up. And the Center and other agencies will testify at a Senate Judiciary Committee hearing on e-prescribing of controlled substances. Ms. Trudel said a good deal of interest in e-prescribing was shown at the November AHIC meeting, and a proposed recommendation is being developed to make e-prescribing mandatory under Medicare.
CMS also has developed a roadmap identifying the “key drivers” of e-prescribing. As it moves down that road, it is looking for partners, pilots, new standards, and ways to educate providers.
On the NPI, the May 23, 2008 deadline is approaching. Compliance within Medicare is increasing, and CMS is able to match claims with NPIs to legacy files and process the claims. Starting on January 1, 2008, it will reject Medicare Part A claims lacking an NPI, followed by other steps toward full compliance.
Regarding HIPAA security, CMS has become more proactive in enforcement and has contracted with PriceWaterhouseCoopers to help with security audits. CMS will target covered entities where a complaint exists. It will work closely with OCR and, in response to industry requests, will develop lessons learned from the processes and post them on the CMS Website to help educate covered entities.
In the discussion period, members had questions and comments on the following topics:
- the reasoning behind further investigation of rx fill status
- the new planned audits and the desirability of an audit plan
- the possibility of using financial and other incentives for e-prescribing
- the downside of locking in certain procedures in regulations, and how to facilitate modifications
- issues with electronic signatures versus wet ones
- soliciting patients’ views of the business case for the fill-status notification
- a possible role for NCVHS in providing input on the desirability of the policy that accompanies e-prescribing standards
ENHANCED PROTECTIONS FOR USES OF HEALTH DATA —Dr. Cohn, Dr. Carr, and Mr. Reynolds
The Committee then embarked on the major activity of the two-day meeting, reviewing and revising the draft report on enhanced protections for uses of health data. Dr. Cohn began by observing that the public comment period in October for an earlier draft of the document proved very useful. In all, the ad hoc Workgroup heard from nearly 60 testifiers during eight days of hearings, and it received around 1,000 comments from a range of stakeholders during the comment period.
Dr. Carr presented the report’s guiding principles and noted that what is proposed is a stewardship framework. HIPAA is the first step toward stewardship, and the cornerstone of the report. The report strengthens some dimensions of HIPAA. It also addresses the reality that many entities and activities exist outside HIPAA’s purview, so HIPAA needs to be expanded. Beyond that, the report notes the need to explore issues related to de-identified data and other matters that are excluded from HIPAA. At Dr. Carr’s invitation, members then discussed and suggested revisions to the early sections of the report (introduction, background, major themes of testimony, and guiding principles).
After acknowledging Dr. Cohn’s leadership, Mr. Reynolds, aided by Ms. Amatayakul, led the group in a discussion of substantive questions related to the report’s draft observations and recommendations. There are nine major areas of recommendations, each with several sub-recommendations. This discussion took most of the rest of the first day of the meeting, with breaks for the other items on the agenda (summarized below). On day two, the ad hoc Workgroup presented a redlined, revised version of the document for the Committee’s review. Ms. Amatayakul described and read through the revised sections, which were discussed and revised further. When all the substantive issues were resolved, the Committee passed a motion to approve the report and recommendations. After wordsmithing and a few final refinements, the report will be finalized by the Executive Subcommittee.
SUBCOMMITTEE ON PRIVACY AND CONFIDENTIALITY REPORT UPDATE —Mr. Rothstein
Members were given copies of the latest version of a letter on which the Subcommittee has been working since April 2007. It addresses what abilities individuals should have to control their most sensitive health information when that information is disclosed for treatment purposes via the NHIN. Mr. Rothstein noted that it is still a work in progress, though this is the tenth draft. The purpose of this meeting is to give non-Subcommittee members a chance to review and give guidance on the concepts proposed in the letter.
The issue is important because interoperative, longitudinal, comprehensive records make it possible to disclose to any health care provider all of an individual’s health care history. Many patients would prefer that some providers not see some parts of their record. The question is how to control that to protect privacy so that people do not avoid seeking treatment for sensitive conditions, while also enabling health care providers to practice their profession. The letter describes the various options considered by the Subcommittee and explains the reasoning behind its recommendations. Mr. Rothstein noted that many industrialized nations are struggling with the same issue.
He then read the recommendations aloud. Members praised the style and clarity of the letter and stressed the critical importance of the issues it addresses. Members made comments and asked questions on the following topics:
- Physician liability—for example, in prescribing Oxycontin for pain control without knowing if sequestered information had to do with substance abuse.
- The pros and cons of disclosing to physicians that some information is sequestered.
- The merits of having a replacement feature to restore sequestration after using the “break the glass” feature, and the broader question of technically how to reinstate limitations once data have been released for a specific use.
- Compatibility with a Joint Commission requirement that every encounter begin and end with a medication reconciliation.
- Concerns about how physicians can practice medicine with partial information.
- The need to accommodate patients who would avoid treatment altogether if not allowed to conceal information.
- The idea of a categorized list of the types of information sequestered.
- The idea of making patient safety and potential harm the criteria for breaking the glass and having an informed consent process to enable patients to set the threshold.
- The need for criteria for retiring some information after a period of time, to keep the volume manageable.
- The importance of stressing the enhancement of provider-patient communication as a major purpose of this exercise and of the intended protections.
- The importance of figuring out how to increase people’s confidence that information can be disclosed without risk.
- The reality that although they represent a very small percentage, some people do want to sequester information, and they need to be accommodated.
- The need to stress in the document that with health information, “the future will be different from the past” because of the role of technology.
- The reality that some health information has always been sequestered, but what is different now is the size, scope and speed of moving it.
- The need to further study some core issues because of their complexity and seriousness; the related issue of what changes need to be made in the draft recommendations so that some NCVHS members, particularly some physicians, are comfortable with them.
- The urgent need for NCVHS recommendations on these issues, because health information exchanges are being built, large system investments are being made, and many participants are not attuned to the issues raised in this letter. (Mr. Reynolds: “IT, left to itself, …can completely disenfranchise maybe both sides.”)
Mr. Rothstein thanked his fellow members for their “beautifully expressed” input. The Subcommittee on Privacy and Confidentiality hopes to present a final version of the letter for Committee review and approval at the February meeting.
HEALTH I.T. TO SUPPORT THE PATIENT MEDICAL HOME —Robert Phillips, MD, and Michael Klinkman, MD (see slides)
Drs. Phillips and Klinkman reported on a conference, “Harmonizing Data Standards for Primary Care,” held by the Robert Graham Center with the support of AHRQ. Dr. Phillips said the conference was about “how to empower patients and send them home with health information technology.” The idea was to have a conversation with people involved in primary care and standards about opportunities to affect the development of standards and harmonize HIT, information flow and standards.
In the primary care context, most Americans have a usual source of care, but no use cases are being developed about the physician-patient visit. The medical home, a concept that currently has “legs,” is based on the idea of sustaining a relationship and set of functions. There is general understanding that it has to have a robust IT system. Dr. Phillips asserted that quality, measurement, decision support, synchronous care, and the connections between PHRs and EHRs are impossible without standards. Yet the standards process has neglected primary care. It needs its own information model, with information organized into episodes of care. Most EHRs also do not accommodate these needs.
Dr. Klinkman then described the conference, which was held in October 2007. He referenced a July 2007 AHRQ publication in which people from the Institute for Health Care Improvement looked at HIT for primary care. Simply implementing current HIT tools will not help clinicians achieve continuing improvements in primary care. The issue is the care model. He noted the information needed, including who has a condition (the registry), who gets a condition (clinical epidemiology), the context in which care is provided, and what other providers are doing. He showed an information model based on those questions.
He then discussed ICPC, a classification that includes 17 chapters for use by primary care physicians, organized into episodes. It incorporates patient voices, accommodates social problems, and can track processes of care over time. It is not a terminology, and maps to standard terminologies and classifications. The information inputs stored in ICPC can be used in primary care and structured in five basic “views” including aggregate views, aggregate longitudinal views, and cross-sectional patient views. ICPC is in use in the Netherlands and in Malta. Dr. Klinkman noted that the EHR is not structured so this kind of information is easily retrieved. He then outlined the understanding reached by people at the conference regarding how classifications and terminologies could fit together to support primary care HIT. He noted the value that could be added by coupling information technology and patients’ ways of obtaining information with the medical home. He stressed that this is based on simple building blocks.
Finally, Dr. Phillips outlined seven ways in which NCVHS can help. They include endorsing ICPC or recommending to ONC and AHIC that they develop a use case for primary care; integrating ICPC’s reason for encounter codes into ICD-10-CM; creating privacy standards that permit the interaction and linkage of PHRs and EHRs; and helping them develop a working relationship with ONC.
Discussion
Dr. Green, who has been involved in this endeavor, described the “electricity” that happened in the conference when participants from the various sectors saw how their pieces could fit together around an integrated platform, based on the concept of the medical home. This concept has a good deal of currency now, and a data model and appropriate classification, coding and mapping may be timely. He urged that NCVHS help explore what data model, classification and coding structures are necessary to support the medical home that Medicare is now testing.
Ms. McCall agreed that the Committee could provide leadership, and she noted that this is a policy issue before it’s a technology issue.
Dr. Cohn pointed out that juxtaposed with the shared vision for integration across settings of care, with useful information flowing among them, is the reality that “many specialists deliver some aspect of primary care.” Thus, information needs to help specialists as well as primary care providers and patients. He wondered where ICPC fits in this reality. Dr. Klinkman said ICPC provides data capture and retrieval, and it can be used in non-primary care settings, as well.
Dr. Warren hailed the clinical basis and purpose of this technological work and the fact that it is useful for nursing practice, too.
Dr. Steinwachs observed that primary care, and this instrument, organize pieces of information around the person rather than around “a disease in a person.” One of the barriers now is in the coding process. He noted the longstanding NCVHS recommendation for ambulatory care data about the inclusion of information on the patient’s presenting complaint, in the patient’s own words. Dr. Klinkman said the idea here is to have a patient portal into the information system, by which patients can enter their presenting complaints, with a thesaurus to link to the right codes.
Finally, Dr. Green commented that this process is not about ICPC, per se; however, ICPC is “the only existing primary care classification that has been demonstrated to work,” thus elevating the discourse from the theoretical to the practical and evidence-based.
Dr. Cohn noted that the Subcommittee on Populations plans to take up the topic of medical home.
BRIEFING FROM THE OFFICE OF THE NATIONAL COORDINATOR —Dr. Loonsk (see slides)
Dr. Loonsk updated the Committee on ONC’s work on the standards front, the work on the NHIN, and trial implementations. Regarding standards in the national agenda, the priorities are expressed in the form of use cases, which lead to standards harmonization on the HITSP and then to interoperability specifications for use in several contexts, including CCHIT. ONC is concentrating on data and technical standards, particularly for HIE between organizations, and on standards for confidentiality controls and to support EHR functionalities. An important goal is to have testable implementation specifications. Testable interoperability is based on agreed-upon standards and specifications, which are based on a valid harmonization process, which is based on an appropriate context for the standards being used.
Dr. Loonsk showed a diagram (“coordinated timeline”) of the way all this is being introduced and staged. There are three cycles, starting in 2006, each of which identifies the high-level standards to be used and a time for acceptance, implementation testing, and consideration by the industry. The cycle time between harmonization, prioritization and use case work is typically about two years. Secretary Leavitt is about to recognize the first round of interoperability specifications. Simultaneously, ONC is engaged in activities for the next cycle and the third one.
Dr. Loonsk reviewed the current status of the three rounds. ONC is also working to refine the cycle, and it commissioned an IOM panel to look at it. It also is trying to speed up each of the processes and reduce the demands on volunteers. HITSP and CCHIT have a joint working group to coordinate timeframes and oversee the process. These bodies are also giving input to the AHIC process. The fourth round of priorities has been taken back to these three bodies for revalidation.
Dr. Loonsk then showed slides on the NHIN trial implementations, which are moving at a rapid clip. He reminded the group that the NHIN is conceived as a network of networks, not a centralized system. He reviewed the definitions being used and the major building blocks and functions. The first step, prototype architectures, is completed; the second step, trial implementations, is under way. These are intended to drive toward policies, procedures and production systems by 2010. ONC is working to coordinate these activities with other aspects of the national agenda, with attention to requirements such as the NCVHS work on functional requirements and privacy and confidentiality. ONC has made nine awards to regional or jurisdictional health information exchanges, which are now moving data and trying to attract new participants. ONC created the NHIN Cooperative with working groups that are developing specifications and working on issues. One group, DURSA, is working on data use agreements. ONC held three public fora on the NHIN in the last round, and it plans to continue such meetings around the U.S.
Discussion
In view of the limited time available, Dr. Cohn allowed three questions for Dr. Loonsk and promised a longer discussion in February. The questions concerned getting more information on the DURSA projects; the importance of reconciling ONC’s consumer access models and NCVHS’s forthcoming recommendations; and the need for a use case for primary care.
SUBCOMMITTEE AND WORKGROUP REPORTS Quality Workgroup—Dr. Carr
The Workgroup met with representatives from the AHIC Quality Workgroup to review the AHIC quality vision roadmap draft, which outlines necessary components to develop HIT capabilities to achieve the vision for quality. The two groups agreed on the value of aligning their work. The NCVHS Quality Workgroup proposes generating a summary of relevant NCVHS work and sharing it with AHIC (February deadline). The two bodies would then plan a joint hearing on data stewardship. It was noted that this subject is of interest to the entire Committee, and full participation bringing in the perspectives of the different subgroups would be best. Dr. Cohn said planning would continue at the February Executive Subcommittee meeting.
Dr. Steuerle pointed out that the concept of stewardship includes the beneficial use of a resource, not just hiding it away.
Subcommittee on Populations—Dr. Steinwachs
The Subcommittee has been looking at measuring preparedness, having broadened the original frame of surge capacity. Interviews are planned for the February meeting, followed by production of a letter. One focus of interest is what was learned from the Katrina experience about measuring preparedness.
The Secretary has responded to the Subcommittee’s letter on data linkages. The Subcommittee has grown more aware of the ways this topic cuts across other substantive areas being dealt with by NCVHS, including data stewardship and preparedness. It is considering having a half-day session every other year to assess progress in increasing access while protecting privacy.
Three new topics are being considered. The first, brought to the Subcommittee by the NCHS Board of Scientific Counselors, is harmonization of vital statistics across the states, focusing in particular on mortality data. Jennifer Madans from NCHS is advising on how to proceed. The Subcommittee will decide on next steps after an April National Academy workshop on vital statistics. Dr. Steinwachs added that the BSC has a new chair, Dr. Elo, and it is in transition with five new members. Dr. Scanlon is still representing NCVHS at their meetings.
Another possible project is updating the vision for 21st century health statistics, to add timely details and integrate it with the broader work of NCVHS, including EHRs and other strategies. Dr. Sondik is encouraging the Subcommittee to do this. A proposal is being drafted, and a decision may be made about it in February. This is an opportunity to draw in the Subcommittee’s recent work on data linkages and preparedness.
The third area under consideration is how to measure 1) whether or not someone has a medical home and 2) the performance of the medical home and primary care experience. There is an effort to identify staff to support this exercise, with the aim of holding hearings in early 2008.
Subcommittee on Privacy and Confidentiality—Mr. Rothstein
The Subcommittee plans to move ahead with its letter on sensitive health information and will hold a series of conference calls. The letter will be revised to be responsive to members’ comments at this meeting. The goal is to have a letter for consideration at the February full Committee meeting. Mr. Blair praised the cogency and coherence of the letter and stressed the importance of getting its “compelling” analysis and recommendations into the public discussion. He expressed his hope that the Committee could act expeditiously in February and not “rip apart” the letter.
The Subcommittee is considering several possible future projects. One is to assist NCHS with rules for disclosure to researchers of DNA in clinical data. Another is to go back and look at one or more of the issues that the Subcommittee chose not to address in its June 2006 and current sensitive health information letters.
Subcommittee on Standards and Security—Mr. Reynolds
The Subcommittee plans hold a hearing on ICD-10 code sets and related issues in late January. It also will be talking about e-prescribing, following the NPI, and thinking about how to integrate data stewardship into its work.
Final Comments
Dr. Cohn briefly reviewed plans for the February meeting, which will be planned by the Executive Subcommittee. The following agenda possibilities were mentioned:
- Dr. Christopher Chute on ICD-11 plans
- ASPE project on PHRs
- CDC contracts on public health situation awareness
- National Academy study on advancing standards to help IT
- AHIMA/AMIA report on health care terminology and classifications
- Dr. Loonsk—longer discussion, including the process to move from HITSP standards to implementations and how the NCVHS privacy letter is being taken into consideration in their deliberations
- planning for the 60th anniversary symposium
Dr. Cohn then adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
_____________________________________________________________________
Chair Date
[1] Final version: NCVHS, Report to the Secretary of the U.S. Department of Health and Human Services on Enhanced Protections for Uses of Health Data: A Stewardship Framework for “Secondary Uses” of Electronically Collected and Transmitted Health Data. December 19, 2007. http://ncvhs.hhs.gov/071221lt.pdf