Washington Marriott Hotel
The National Committee on Vital and Health Statistics was convened on September 22-23, 2009, at the Washington Marriott Hotel in Washington, DC. The meeting was open to the public. Present:
Note: The transcript of this meeting and speakers' slides are posted on the NCVHS Web site, http://www.ncvhs.hhs.gov . Use the meeting date to locate them.
Mr. Scanlon updated the Committee on NCVHS appointments, HHS leadership positions, and the status of the FY2010 and FY2011 budgets. He focused his report on the Recovery Act and the Stimulus Act, describing each of the three major portions and the Department's plans and activities in each area. There is a new Prevention and Wellness Trust in the Office of the Secretary, and a new Federal Coordinating Council for comparative effectiveness research. Mr. Scanlon also talked about three special ASPE projects. He offered to arrange a briefing for the Committee on a recent study in New York City of data exchange between clinical settings and public health on reportable conditions and major chronic illnesses.
Ms. Trudel reported that CMS is moving toward "critical phases" in developing the proposed rule for Medicare and Medicaid Incentives Program for EHR meaningful use, and she described its current and planned process for that. She also briefed the Committee on HIPAA security enforcement, e-prescribing, and an analysis of CMS business practices and how they will be affected by ICD-10 and 5010. CMS is setting up a program management office. On health reform legislation, she noted the interest in moving into the realm of operating rules and administrative simplification provisions.
Mr. Reynolds reported on recent talks among him, Mr. Scanlon, and National Health IT Coordinator Dr. Blumenthal regarding how NCVHS and ONC can continue to collaborate and the advisory bodies can complement each other. The three-way discussion focused on potential synergies and ways NCVHS can make the greatest contribution to the Department and ONC.
The co-chairs of the Subcommittee on Privacy and Security presented a letter drafted by the Subcommittee on protection of the privacy and security of individual health information in personal health records (PHRs). Mr. Houston read the letter aloud and invited comments and editorial suggestions; many were offered and discussed. On day two of the meeting, the Subcommittee returned with a revised letter, which was discussed, amended slightly, and approved.
Dr. Friedman and Ms. Daniel briefed the Committee on four broad areas related to ONC and HITECH: 1) national coordination through a permanent ONC; 2) payment incentives to providers and hospitals that demonstrate meaningful use; 3) supportive grant programs authorized in HITECH; and 4) enhanced privacy and security revisions. Ms. Daniel focused particularly on updates from the Federal advisory committees on health IT that are directly advising the National Coordinator, and ONC activities related to adoption of standards and certification criteria. Dr. Friedman focused on the HITECH grant programs.
NCVHS members expressed hope that the grant program would encourage that the HIT workforce be developed as an integral part of the health care delivery team.
Dr. Friedman and Dr. Parrish reported on the first phase of a project to support observation of the NCVHS 60th anniversary by assessing progress on the 2002 NCVHS Health Statistics Vision for the 21st Century, and to revise the Vision in light of developments since 2002. Phase one, which they recently completed, included a literature review, selection of priority recommendations, interviews with 12 key informants and 9 NCVHS experts, and iterative reviews of their findings with NCVHS members and staff. Based on what they heard from the key informants, Drs. Friedman and Parrish reformulated the eight priority recommendations into three overarching ones, summarized as follows:
Based on their discussions with informants, they also offered several new recommendations related to research, EHRs, PHRs, and the organization of and support for the health statistics enterprise. Finally, they affirmed that the core concepts from the 2002 Vision and Information for Health (the 2001 NCVHS report on the NHII) are still valuable and useful as essential frameworks, and they suggested a series of next steps for NCVHS.
The presentation was followed by a rich discussion among the presenters and NCVHS members and staff. There was broad agreement that current conditions offer an unprecedented opportunity to substantially change the approach to developing health statistics, and that even the basic concepts and terminology need to change to reflect the pivotal role of the health statistics enterprise in managing clinical and population health. Other key points were the need to educate the industry and bring them along, and the importance of doing the needed research to validate the new sources of information before harnessing them and seeking general acceptance for them within the health statistics enterprise. Additional important points were a caveat that the current opportunity could be lost if the critical mechanisms to get data to flow are not defined in time, and an assertion that a strategy is needed for meeting the ongoing need to fill in gaps.
Dr. Scanlon represents NCVHS on the NCHS Board of Scientific Counselors, and Dr. Lepkowski is the BSC liaison to NCVHS. Each commented on the easing of the budget situation for NCHS and the fact that even so, some things remain troubling.
Mr. Land described two issues that are a current focus of attentionthe data elements that should be collected under the vital statistics system, and the fact that not all states collect the same data.
Dr. Scanlon called attention to the overlap between issues around long-term care statistics and the Committee's new look at a vision for health statistics
Ms. Greenberg described the plans for a September 23-24 gathering on NCVHS Chairs, current and past, in Charlottesville, VA, for a roundtable discussion and a series of individual oral histories. These activities will be filmed, and films will be developed from the material for posting on the NCVHS Website and viewing at the 60th anniversary celebration on June 17, 2010. That celebration, to be held at the new National Academy of Sciences building, will include a symposium and a reception. A historical document is being developed to supplement the 50-year history, focusing on the past decade.
Please see the final section of the detailed summary, below, for these brief status reports.
Mr. Reynolds welcomed everyone, reviewed the agenda, and his invitation, those present introduced themselves.
The Secretary has recently reappointed Dr. Scanlon and Dr. Tang for four-year terms on NCVHS. In addition, she has appointed Anthony Rogers, Director of the Arizona Medicaid Program, to fill Ms. McCall's seat upon the end of her term. He will be present at the November meeting. Ms. Greenberg expressed appreciation for Ms. McCall's service on the Committee.
Mr. Scanlon briefed the Committee on the status of leadership appointments within HHS. The Department established an Office of Health Reform in the Spring, and in the last month a new Chief Technology Officer, Todd Park, has been appointed. His focus is on how to use technology to improve HHS programs, mission, and operations.
The Department is awaiting congressional action on the President's FY2 2010 budget. The fiscal year may begin with a continuing resolution. Work has begun on the FY 2011 budget. NCHS received an increase in its FY09 budget, and there is hope for continuing support for population health statistics in following years.
Mr. Scanlon focused on "the biggest news," the Recovery Act and the Stimulus Act, describing each of the three major portionsHITECH, with its support for extension centers and Medicare and Medicaid provider incentives and their meaningful use requirements; the Recovery Act, focusing on prevention and wellness, with the creation of a new Prevention and Wellness Trust within the Office of the Secretary; and comparative effectiveness research, for which a Federal Coordinating Council has been created. The IOM has been asked for ideas about priorities within a framework; that and the report of the coordinating committee are posted on the HHS Website.
ASPE has several special projects under way: partnering with CMS on evaluations of PHR systems in Medicare programs in South Carolina and Utah/Arizona; assessing HIT capacity and information exchange in community health centers and the safety net; and studying the capacity of its own data systems to support health reform. It is also upgrading the Department's Website, which serves as a gateway to all the statistical information in HHS.
In response to a question from Dr. Green, Mr. Scanlon offered to arrange a briefing for the Committee on a recent study in New York City of data exchange between clinical settings and public health on reportable conditions and major chronic illnesses.
CMS is moving toward "critical phases" in developing the proposed rule for Medicare and Medicaid Incentives Program for EHR meaningful use, and is on target for a December publication date. It will be followed by a 60-day comment period, with the final rule to be published around May, 2010. The regulation is significant and quite complex. CMS is relying heavily on background materials and recommendations provided by the HIT Policy and Standards Committees and the NCVHS Standards Subcommittee.
Regarding HIPAA security, Ms. Trudel noted that the enforcement function was transferred from CMS to the Office for Civil Rights on July 27, 2009, partly prompted by provisions of Title XIII of the HITECH Act. In e-prescribing, CMS is working with the DEA and ONC on a final rule on controlled substances. There is progress toward an interim final regulation on NCPDP 10.6, which is expected in early 2010. The agency is completing an analysis of CMS business practices and how they will be affected by ICD-10 and 5010. It will be posted on the web. It is setting up a program management office, and will want help from NCVHS to monitor the industry's progress on implementing 5010 and ICD-10.
On health reform legislation, she noted the interest in moving into the realm of operating rules and administrative simplification provisions.
Mr. Reynolds reported briefly on recent talks among him, Mr. Scanlon, and National HIT Coordinator Dr. Blumenthal about how NCVHS and ONC can continue to collaborate. The National Committee wrote an introductory letter to the Secretary describing NCVHS, its process and notable products in the domains in which it advises, and its customary role in framing issues, identifying consensus, evaluating, and making recommendations related to standards, privacy, quality, population health, and the NHII. The document and the conversation with Dr. Blumenthal took note of the Committee's historic role in recommending the creation of ONC and, later, functional specifications for the NHII. Mr. Reynolds also outlined for the new Coordinator the Committee's current and future work plans related to meaningful measurement, population health, data stewardship, and other areas.
The discussion focused on potential synergies and various specific ways NCVHS can make the greatest contribution to the Department and ONC. Mr. Reynolds and Dr. Blumenthal talked about how to sustain good working relationshipsfor example, through regular communication and coordination in areas of overlap with other advisory committees.
Dr. Green proposed that some sort of structured exchange be arranged between NCVHS and the Policy Committee, and this idea was discussed briefly. Dr. Friedman observed that the topic of data integrity fits nicely on the NCVHS agenda. Mr. Reynolds noted the relevance of the Committee's recent work on data stewardship. In response to comments about meaningful use, Mrs. Greenberg observed that this is an area the Subcommittee on Standards should look at.
The co-chairs of the Subcommittee on Privacy and Security presented a letter drafted by the Subcommittee on protection of the privacy and security of individual health information in personal health records (PHRs). As background, Dr. Francis said the Subcommittee worked on the letter all summer, and it represents full agreement among its members. She noted that it addresses a time-sensitive topic because of recommendations that will be made by February under ARRA. Mr. Houston read the letter aloud and invited comments and editorial suggestions. Many were offered and discussed, which the Subcommittee said it would review in preparing a revised draft for day two.
Dr. Friedman and Ms. Daniel briefed the Committee on four broad areas related to ONC and HITECH: 1) national coordination through a permanent ONC; 2) payment incentives to providers and hospitals that demonstrate meaningful use; 3) supportive grant programs authorized in HITECH; and 4) enhanced privacy and security revisions.
Ms. Daniel focused particularly on updates from the Federal advisory committees on health IT that are directly advising the National Coordinator, and ONC activities related to adoption of standards and certification criteria.
The Health IT Policy Committee and the Health IT Standards Committee each have three work groups, which submit recommendations through the full Policy Committee to the National Coordinator. They have made recommendations on meaningful use objectives and measures. ONC is working closely with CMS, which is drafting the regulations for the incentive program to encourage adoption of meaningful use of certified EHR technology. The notice of proposed rulemaking is slated to come out in December, 2009. The Policy Committee has received testimony from several panels on privacy and security issues related to health IT and health information exchange. A group has been formed to think through priority-setting and triage. NCVHS member Paul Tang, Vice-Chair of the Policy Committee and a leader in organizing the hearings, is bringing the work of NCVHS to the table to inform the Policy Committee.
The Health IT Standards Committee's workgroups are instructed to take direction about priorities from the Policy Committee. They have made recommendations for standards for implementation specifications for meaningful use criteria, which are inputs to the rule-making efforts.
In addition to regulations for the incentives program, ONC is working on regulations for standards implementation specifications and certification criteria for EHR technology, with an interim final rule scheduled for release in December 2009. A third suite of regulations relate to the certification process, with December 2009 targeted for a proposed rule. The Health IT Standards Committee has a new work group on implementation and adoption issues related to standards.
ARRA requires ONC to update its strategic plan with all new mandates and programs set forth in ARRA, so ONC has plans to work on that, with input from stakeholders. The statute also requires that a Chief Privacy Officer be in place by February 2010. In response to a suggestion from Dr. Francis, Ms. Daniels said ONC would pursue the idea of arranging coordination between the privacy groups of NCVHS and the Policy Committee.
Dr. Friedman then briefed the Committee on the grant programs in HITECH. Four are mandatory the extension program, grants to states to promote health IT, a program to build the health IT work force, and a program emphasizing research related to health IT. Two are optionalgrants to states and tribes for loans to support health IT adoption, and a demonstration program integrating health IT into health professional education.
ONC has released an extension program funding opportunity announcement totaling $598 million, with preliminary applications due September 8. The regional extension centers will form a consortium that will share learning and experience. A central "Health IT Research Center" will provide central resources to support and coordinate the work of the regional centers. The second program announced was awards to the states focusing on health information exchange, broadly defined, with applications due October 16. States or designated entities are required to operate on the basis of strategic and operational plans.
Dr. Friedman said workforce investment is the third "triplet," along with the extension and state HIE programs. ONC hopes to announce a program in this area soon, in view of evidence of serious workforce shortages in this area.
Dr. Green noted the extensive agricultural extension infrastructure already in place, which has health as one of its pillars, and he wondered what interaction there could be between this system and the new health IT extension system. Dr. Friedman said the intent of the grant is "to leave applicants to draw on available resources as best they can." Dr. Green also expressed hope that the grant program would encourage that the HIT workforce be developed to become an integral part of the health care delivery team, rather than something that "occurs in splendid isolation." He asserted that this is "very crucial to the overall policy objective." Dr. Friedman welcomed the suggestion.
Dr. Warren asked about high-level collaboration between the Department of Labor and HHS around health IT workforce training. Dr. Friedman said the two were in contact. In support of Dr. Green's final comment, she reiterated the importance of designing a health IT system and tools that pay attention to what clinicians need.
Dr. Friedman and Dr. Parrish reported on the first phase of a project to support observation of the NCVHS 60th anniversary by assessing progress on the 2002 NCVHS Health Statistics Vision for the 21st Century, and to revise the Vision in light of developments since 2002. Phase one, which they recently completed, included a literature review, selection of priority recommendations, interviews with 12 key informants and 9 NCVHS experts, and iterative reviews of their findings with NCVHS members and staff.
Dr. Friedman read the eight priority recommendations that NCVHS members identified from among the 36 recommendations in the original report (see transcript or slides). The informant interviews generated comments about the recommendations in general: that they should be explained to end users, including why they are important and needed; and that they should be strengthened, tested, and specified as to outputs and roadmaps for "getting there from here." The other findings from the informant interviews were that HIT has not significantly impacted health statistics since 2002; that HIT holds huge unrealized potential for health statistics; and that HIT should be used to improve communication of health statistics to communities.
Based on what they heard from the key informants, Drs. Friedman and Parrish reformulated the eight priority recommendations into three more overarching ones:
Based on their discussions with informants, they also offered several new recommendations related to research, EHRs, PHRs, and the organization of and support for the health statistics enterprise. (See slides or transcript for all details.)
The speakers affirmed that the core concepts from the 2002 Vision and Information for Health (the 2001 NCVHS report on the NHII) are still valuable and useful as essential frameworks with respect to the health statistics enterprise, influences on the population's health, and the NHII. They suggested a series of next steps for NCVHS, and recommended that NCVHS specify the means through which EHRs, PHRs, and HIT generally can improve health statistics and through which health statistics can improve clinical care. Finally, they recommended that the Committee host a series of highly focused workshops or hearings on five specified topics.
This presentation was followed by a rich discussion among the presenters and NCVHS members and staff. Many people expressed appreciation to the presenters for their lucid and thoughtful report. The discussion generated a sense of excitement, centering in broad agreement with Dr. Green's statement that "we are at a juncture in history where our approach to developing health statistics has the opportunity to change substantially."
Dr. Middleton proposed widening the definition and label of health statistics to reflect the pivotal role of the enterprise in managing clinical and population health. He commented on the need to identify "where we are failing, from a management analysis today," and where the public/private connection is for a broader conception of health statistics.
Dr. Warren observed, "We are at a paradigm shift in the way we look at health data." She stressed the urgency of shifting from a paper-based system to one based on electronic information.
Mr. Reynolds pointed to "a big gap" in terms of industry understanding of the principles involved here, in terms of "the day-to-day operational environment." He stressed the need to educate the industry and bring them along, so that the approach put forward by the presenters becomes "part of the fabric."
Ms. Greenberg stressed the importance of doing the needed research to validate the new sources of informationa step that must precede harnessing them and getting general acceptance for them within the health statistics enterprise. Similarly, Mr. Land proposed that the notion that "health IT holds huge unrealized potential for health statistics" be treated as a hypothesis that needs to be tested.
Calling this "a transformative moment or tipping point," Dr. Scanlon noted that ARRA money has changed the prospect of using electronic health data for population health from "far out in the future" to a plausible reality. However, he cautioned that the opportunity could be lost if the critical mechanisms to get the data to flow are not defined in time. There will be a continuing role to fill in gaps, and this will require a strategy. Also required will be the recognition that significant improvements are possible, and the perfect is the enemy of the good. For example, it will be important to add the right information to claims, which will be a major information source for a long time to come. Answering the question of how to tap into that and make the enterprise "much more reasonable" is, he said, a natural role for NCVHS because of the breadth and depth of its expertise and perspective.
Dr. Steinwachs commented on the prospects for bringing data on the determinants of health, such as environmental data, into personal and/or population health data. Thus, the tipping point is not just related to electronic health technologies but encompasses "the whole diagram" of health determinants. Dr. Hornbrook stressed the importance of getting information not just on inputs but on outputs such as functional health status at a national level.
Dr. Sondik suggested clarifying what is meant by "improving" health statistics, as well as starting with the potential uses of health data to manage the health care system. He noted the likely need to update the legislation that created NCHS, in view of the conditions that were unforeseen 50 years ago when it was written. He proposed that the hearings recommended by the presenters have as their goal producing recommendations on where "all of this"the entire health, health care and health statistics enterpriseshould go in the future, and how the system should be transformed.
Members also raised the following topics:
Mr. Reynolds acknowledged the contributions of Dr. Mary Jo Deering, who has ended her service to NCVHS as a long-time staff and lead staff member focusing on the NHII, and Denise Buenning, whose tenure as lead staff for the Subcommittee on Standards ends as of this meeting. Lorraine Doo of CMS will take her place. He also added his thanks to Carol McCall for her years of service as an NCVHS member.
The Committee then recessed, to reconvene the following day.
Mr. Houston presented a revised version of the letter discussed the previous day. He described the revisions, noting that no substantive changes were made. A few edits were suggested. Following discussion, a motion was passed approving the letter as revised. Subcommittee co-chairs Dr. Francis and Mr. Houston were commended for their leadership, and for the collaborative process they carried out in developing the letter.
Dr. Suarez proposed that a report be prepared pulling together the rich hearing testimony that was gathered as background for the letter, so it can be made available to the public. Following discussion of this idea, Mr. Reynolds asked the Subcommittee to bring a specific proposal to the Executive Subcommittee.
Dr. Carr and Ms. Kanaan presented a revised draft of the Primer on Health Data Stewardship, which they co-authored. NCVHS members contributed inputs throughout the drafting and review process. Dr. Carr explained a few changes made to the previous draft and identified the remaining questions. The group agreed on a few minor revisions, and the Committee passed a motion approving the Primer, as revised.
Members agreed that the Primer will be packaged in an attractive format. In addition to being transmitted to the Secretary with a cover letter from Mr. Reynolds, and distributed to former Chairs at the forthcoming gathering in Charlottesville (see below), several ideas were put forward for other ways to disseminate it widely:
Dr. Scanlon observed that the budget situation for NCHS has eased, although "getting back to where we were is not necessarily where we want to be." Also, just because the budget situation has eased does not mean complacency is in order.
Dr. Lepkowski said the Board of Scientific Counselors (BSC) has not met since June. It has been getting reports reviewing major survey systems. He agreed that "the clouds have parted somewhat," while some things remain troubling.
Mr. Land described two issues that are a current focus of attentionthe data elements that should be collected under the vital statistics system, and the fact that not all states collect the same data. On the first, NCHS had originally proposed to collect only core data starting in 2010, but the decision was made to continue collecting as in the past. However, the question is open for 2011. There is recognition of the need to look at how to improve the system through a new contract, including the completeness, timeliness, and quality of the data. An approach for doing so is under development. Regarding the second issue, the March of Dimes has taken the lead in trying to get all data collected in a common format. Several organizations have gone to Congress to get additional funding for the states to do so, and other efforts aimed at supporting the Center are under way, as well.
Dr. Scanlon called attention to the overlap between issues around long-term care statistics and the Committee's new look at a vision for future health statistics. Consistent with the latter discussion, people are looking at how to build a mosaic of information to provide needed information on long-term care and other matters, and also at what strategy will be most efficient in getting information for policy purposes. These topics are on the September 23-24 BSC agenda.
NCVHS is convening the current and five former NCVHS Chairs (1986 to the present) at a gathering in Charlottesville, VA, on September 23-24. Ms. Kanaan will conduct a series of oral history interviews with each chair, and there will be a roundtable discussion. These events will be filmed, and the material used to create various shorter films for airing on the NCVHS Website and at its 60th anniversary celebration. Ms. Greenberg thanked Ms. Jackson for her leadership in organizing this event.
Ms. Kanaan is updating the NCVHS history, to include a brief review of the first 50 years (a detailed history is available), an overview of the past decade, and content from the Charlottesville convocation of NCVHS Chairs.
The 60th anniversary celebration will take place the afternoon of June 17, 2010, at the new National Academy of Sciences Building on 5th Street in Washington, DC. It will feature a symposium, followed by a reception. The symposium will include programs on the new vision for health statistics/information for population health and will cover all dimensions of the Committee's workquality, standards, and privacy, and population health. The Executive Subcommittee will firm up plans for the event by February, 2010.
In addition, some NCVHS members are planning collaborative events related to the NCVHS 60th anniversary at their institutions or organizations. For example, on March 4-5, 2010, the University of Utah Law School and Division of Medical Ethics and the NCVHS Subcommittee on Privacy and Security will co-sponsor a symposium on "the law meets new developments in health IT."
Dr. Warren reported that the Subcommittee on Standards is planning its December hearings, which will highlight best practices for implementing 5010 and ICD-10. The Subcommittee plans to develop a document of best practices for the community to use. It is also starting to plan for the next HIPAA implementation report to Congress.
Dr. Steinwachs reported the Subcommittee on Population Health has been working with Drs. Friedman and Parrish to plan the next steps of their report on the health statistics vision. There is talk of spending one day of the November full Committee meeting to discuss it. The Subcommittee has discussed the idea of replacing the term "health statistics' with something that gets at the broader idea of the information needed to manage health and the health system. One insight is that health statistics could be used to drive the clinical encounter, management of the health system, and evaluation of health system changes. Other insights had to do with potential new sources and uses of data.
Ms. Greenberg observed that the process of "revisiting" the 21st century vision is completed; henceforth, we are looking forward. Mr. Scanlon endorsed that idea and proposed not even linking future explorations to the 2002 NCVHS report.
Mr. Houston commented that the Subcommittee on Privacy and Security is happy to have completed its letter on PHRs and gotten it approved. It will hold a call to talk about what to do with the hearing content related to the letter.
Dr. Suarez outlined the steps being taken by ONC, HITSP and others related to security and privacy. At least three groups are developing documents on consumer preferences. Another topic of interest concerns the segmentation of data and consent.
Dr. Carr gave an overview of the Subcommittee on Quality's forthcoming hearing on "The Meaningful Measure Supply Chain: Building Measures that Matter for Our Nation's Health and Healthcare Priorities."
Mr. Reynolds then adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
/s/ November 19, 2009