Department of Health and Human Services
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
December 1-2, 2010
Marriott Washington Hotel, Washington, DC

Meeting Minutes

The National Committee on Vital and Health Statistics was convened on December 1-2, 2010 at the Marriott Washington (D.C.) Hotel. The meeting was open to the public.

 

Present:

Committee members
Justine M. Carr, M.D., Chair
Leslie Pickering Francis, J.D., Ph.D.
Larry A. Green, M.D.
Mark Hornbrook, Ph.D.
Garland Land, M.P.H.
Blackford Middleton, M.D.
Sallie Milam, J.D.
J. Marc Overhage, M.D., Ph.D.
William J. Scanlon, Ph.D.
Donald M. Steinwachs, Ph.D.
Walter Suarez, M.D.
Paul Tang, M.D.
Judith Warren, Ph.D., R.N.

Lead Staff and Liaisons
Marjorie S. Greenberg, NCHS, Exec. Secretary
James Scanlon, ASPE, Exec. Staff Director
Jorge Ferrer, M.D., VA liaison
J. Michael Fitzmaurice, AHRQ liaison
Charles Friedman, Ph.D., ONC liaison

Others
Debbie Jackson, NCHS
Katherine Jones, NCHS
Marietta Squire, NCHS
Missy Jamison, NCHS
Lorraine Doo, CMS
Maya Bernstein, J.D., ASPE
Michael Millman, ASPE
Joy Pritts, J.D., ONC
Carol Bickford, PhD, American Nurses Assn
Thomas Bizzaro, R.Ph., First DataBank
Michael J. DeCarlo, Esq., BlueCross BlueShield Assn.
Frank Kyle, DDS, MS, American Dental Assn.
Angela Jeansonne, AOA
Allison Viola, AHIMA
Jeannette Thornton Barrett, AHIP
Lynne Gilbertson, NCPDP
Margaret Weiker, HP

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

EXECUTIVE SUMMARY

Update from the Department―Privacy: Joy Pritts, ONC

Ms. Pritts focused her report on ONC’s “outward” work on privacy and security. ONC is processing a set of recommendations received from the HIT Policy Committee, and hopes to move forward on the whole set early in 2011. More recommendations are forthcoming. Issues being addressed include transparency, protections in place and gaps, and provider identification.

Community Health Data Initiative―Todd Park, HHS Chief Technology Officer

The HHS Community Health Data Initiative (CHDI) is part of the federal government’s Open Government Initiative in which the Secretary wants to help transform the health care system and improve public health through publishing data and collaborating actively. The CHDI is a flagship initiative designed to leverage the power of HHS’s data and catalyze the emergence of an ecosystem of data supply and use that triggers a cascading wave of public benefit. A meeting convened by IOM on March 11 crystallized the vision of HHS making data freely accessible to the world (within privacy, confidentiality and trade secret constraints) and encouraging a broad array of innovators to help provide the information with which people can make better decisions. The meeting occasioned an impromptu call for applications (apps) that would be showcased at a big public meeting in June. HHS put a lot of data on the CHDI website and made it easy to find, download and work with, and encouraged innovators to see what they could do with the data.

This led to an explosion of innovation. The Community Health Data Forum was held on June 2. The apps selected for showcasing represented a cross-section of uses. Mr. Park briefly described six apps. He stressed that the essential deliverable of this entire effort is not a set of apps but the catalyzation of an ecosystem of people and organizations that turn data into usable, accessible applications, as well as actively cultivating and sparking use and conversation among stakeholders, who include consumers, employers, providers, mayors, and public health officials. Publishing the data represents 10 percent of the work; marketing the data, 90 percent.

In response to comments from NCVHS members about privacy concerns, Dr. Park welcomed the Committee’s help and recommendations on privacy issues in his arena. He proposed that the Committee participate in the second annual Community Health Data Forum on June 9, 2011. He then described a series of other activities, including the Health 2.0 Developer Challenge, code-a-thons for developers, the launch of Blue Button by HHS and the VA, and a health data journalism workshop. There is an effort to rewire HHS processes to encourage the publication of data by all HHS agencies. A supersite, healthdata.gov, will be deployed in January 2011 as a one-stop resource for federal data sets.  Dr. Green urged that it encompass all major determinants of health.

ONC Update/IOM Preliminary Report―Chuck Friedman, Ph.D.

Dr. Friedman began with a few highlights from ONC and then focused primarily on the Rapid Learning Health System. The IOM will issue a report (not formal recommendations) by the end of 2010, based on three IOM workshops on this subject. Four themes emerged through the workshops: technical progress (crystallized by the computer systems concept of ultra-large-scale systems), knowledge generation and use, patient and population engagement, and governance.

Report from Executive Subcommittee Strategy Session―Dr. Carr (slides)

Dr. Carr briefed the Committee on the previous day’s Executive Subcommittee strategy session. Her presentation and the ensuing discussion provided the backdrop for subcommittee breakout sessions. The task before the Committee is to identify a direction, roadmap and configuration for the next 18-24 months. At the strategy session, Executive Subcommittee members discussed NCVHS priorities with respect to a number of HHS initiatives, notably the Community Health Data Initiative and the Rapid Learning Health System. In this context, Dr. Steinwachs briefed full Committee members on preliminary plans, embraced the previous day by the Executive Subcommittee,for an NCVHS project on communities as learning health systems.

The Committee then turned to a discussion of the optimal NCVHS structure for addressing emerging needs and moving expeditiously in the current environment. The overall idea is to enable the creation and functioning of flexible, cross-cutting teams that draw on all relevant areas of expertise for selected projects around themes that draw everyone in. There was a general convergence around the concept of a moveable structure in which work groups composed of diverse opinion and expertise form to carry out specific projects and products, while the Committee also retains some version of its traditional expertise-based structure.

The group talked at length about the constructs and terminology underlying rapid learning health systems, community health data uses, and the new epidemiology, largely for the purpose of clarifying their approach to NCVHS configuration and future priorities. Members also explored future priorities further, highlighting the importance of data capture in particular.

Developing a Quality Measurement Roadmap―Drs. Tang and Middleton (slides)

The Subcommittee on Quality held a hearing on creating a quality measurement roadmap on October 18-19. The co-Chairs presented key observations and possible recommendations from that hearing as background for a letter that the Subcommittee will bring to the Committee at its next meeting. They explained that the Subcommittee embarked on the roadmap because current measurement is misaligned with the vision for health care reform. The roadmap is designed to encompass what should be measured, for whom, and from whose perspective. The primary needs to be met are those of consumers/patients, who are not served by existing measures, and also of providers. The secondary users whose needs must also be met are professional organizations; accreditation organizations and regulators; and payers and group purchasers. The October hearing elicited the perspectives of each of these stakeholder groups. The Subcommittee’s goal is to help create a roadmap for quality measures that will measure both individual and population health status using current and emerging electronically available data sources. Assessment will increasingly focus on patient experience and value and take advantage of health IT. The Subcommittee on Quality focused on three provisional recommendations, which Dr. Middleton discussed along with the reasons for each one.  In addition, the Subcommittee points out that providers use different measures for internal quality improvement and for public reporting, and it wonders if a set of measures can be used for both purposes. This presentation stimulated a wide-ranging discussion among members and staff, on the basis of which the Subcommittee will continue to work on its letter and recommendations.

Final comments and charge to subcommittees―Dr. Carr

Dr. Carr outlined several process recommendations from the Executive Subcommittee meeting and urged the subcommittees to clarify their goals and directions in their breakout-sessions.

Overview of Upcoming Standards: A Tale of Two Transactions (slides)―Lorraine Doo, Michael Albright, Drs. Suarez and Warren

To prepare members for forthcoming recommendations mandated by ACA, the co-chairs and staff members of the Subcommittee on Standards briefed the Committee on Health Care Payment and Remittance Advice (835) meets the Automatic Clearing House (ACH) Electronic Funds Transfer (EFT). The briefing covered three large topics: 1) the charge to NCVHS; 2) how health care payment and remittance advice and money are transmitted; and 3) what problems standards and operating rules would solve. Mr. Albright gave the overview, supported by detailed slides. (See transcript for details of this presentation.) The Subcommittee will hear testimony on the two transactions at a December 3 hearing. Dr. Suarez offered comments on context and what the Subcommittee expects to hear at the hearing.

Update: CMS Innovations and Initiatives―Ms. Doo

Ms. Doo returned to the topic of the Blue Button for MyMedicare.gov, prompting discussion with members. Turning to the HITECH program for meaningful use, she said the registration process begins in January 2011, with a single system for Medicare and Medicaid providers. Strenuous testing is under way. Incentive payments are to begin in May 2011. There are two outreach efforts for ICD-10 and 5010, with testing set to begin in January based on the regulations for “original 5010.” One outreach effort is for Medicare, and the other is for the industry at large. Members agreed to revisit in February questions about mapping SNOMED CT to ICD-10.

Update: ICF and Public Health Data Standards Consortium―Ms. Greenberg

Ms. Greenberg briefed the group on two activities NCVHS helped sponsor in connection with the 60th anniversary. One was the 2010 meeting of the North American Collaborating Center (NACC), the 15th annual conference on the International Classification of Functioning, Disability and Health (ICF). The ICF and functional status are relevant to all NCVHS domains, and the Committee is committed to monitoring this topic. She reported success in such areas as getting ICF into the standards infrastructure and recognition in HL7 standards and a recognized external code set in the X12 standards. The next step is for people to use it.  She concluded that there are clear steps for moving forward, but no resources for doing so. NACC welcomes the opportunity to explore next steps with NCVHS. Member discussion focused on how the potential of the ICF can be realized as well as challenges and concerns in this area. Dr. Green proposed that NCVHS put classification progress on its agenda as a routine item. Dr. Ferrer, who is leading a patient-centered medical home national project at the VA, offered to use its capacities in some way, for example for a demo. Dr. Middleton noted the connections between the foregoing conversation and the quality roadmap conversation and the need for practicality and “the right level of vision.”

Ms. Greenberg commented briefly on the Public Health Data Standards Consortium (PHDSC), the second 60th anniversary-related activity. Because the Consortium and NCVHS share an interest in maximizing health IT standardization and meaningful use of health IT in public health, she asked that the Consortium present at the February NCVHS meeting. Dr. Suarez called the Subcommittee on Population Health’s attention to the Consortium’s next steps and the efforts to prevent a digital divide between these two worlds.

Subcommittee Reports and Next Steps

(See brief summaries below.)

DETAILED SUMMARY

―Day One―

Call to Order, Welcome, Introductions; Gratitude for Cynthia Sydney

Following introductions, Dr. Carr spoke in gratitude for the life of NCVHS staff member Cynthia Sydney, who died suddenly in November. Cynthia worked closely with the Subcommittee on Quality and was valued for her collaborative, generous spirit. Ms. Greenberg thanked the Committee for their outpouring of condolences and comments about Cynthia. They were shared with her family, who told Ms. Jones that Cynthia loved working with NCVHS.

Update from the Department―Privacy: Joy Pritts, ONC

Ms. Pritts focused her report on ONC’s “outward phase” of work on privacy and security. ONC is processing a set of recommendations received from the HIT Policy Committee, and hopes to move forward on the whole set early in 2011. More recommendations are forthcoming. Issues being addressed include transparency, protections in place and gaps, and provider identification. The Tiger Team is holding a public hearing on December 9 on patient matching (information to person). ONC continues to work with a cross-agency task force on HIT, one focus of which is cybersecurity. It is also working with health care reform efforts.

Dr. Carr asked about ONC’s work on state health information exchange initiatives in relation to the recommendations of the policy group and Tiger Team, and whether a “convergence” is intended so that models and best practices can be shared. Ms. Pritts said communities of practice are being formed for best practices in all ONC grant programs; but these particular programs are so new and diverse, and staff is spread so thin, that this is difficult to do in this case.

Community Health Data Initiative―Todd Park, HHS Chief Technology Officer

The HHS Community Health Data Initiative (CHDI) is part of the federal government’s Open Government Initiative, designed to make government more transparent, participatory and collaborative “with the world outside government.” The Department’s Open Government plans for accomplishing this are posted at HHS.gov/open. The Secretary wants to help transform the health care system and improve public health through publishing data and collaborating actively. The CHDI is a flagship initiative designed to leverage the power of HHS’s data. It is based on the work of the National Oceanic and Atmospheric Agency, which releases data on weather that innovators inside and outside government turn into an array of uses, products, and services to catalyze change and help people make better decisions to improve the public’s welfare. Based on this model, HHS wants to catalyze the emergence of an ecosystem of data supply and use that triggers a cascading wave of public benefit.

On March 11, 2010, HHS brought together a group of 45 innovators at a meeting convened by the IOM. Participants included health care, public health, and health data people as well as people in the world of information and communication technology. The intersection of leaders from disparate disciplines created “magic” and excitement, and crystallized the vision of HHS making data freely accessible to the world (within privacy, confidentiality and trade secret constraints) and encouraging a broad array of innovators to help provide the information with which people can make better decisions. The meeting occasioned an impromptu call for applications  (apps) that would be showcased at a big public meeting at the IOM on June 2. HHS put a lot of data on the CHDI website and made it easy to find, download and work with and encouraged innovators to see what they could do. This led to an explosion of innovation.

The Community Health Data Forum was held on June 2, co-hosted by Dr. Harvey Fineberg and Secretary Sebelius. (The video of the plenary session on YouTube had 13,000 views by 12/1.)  The apps selected for showcasing represented a cross-section of uses. Mr. Park briefly described six apps, including the Network of Care for Healthy Communities; iTriage; a game called Community Clash; and Asthmopolis. (See transcript for details.)  Mr. Park stressed that the data being released into use are evidence based. Citing the USDA Food Atlas as an example, he noted that much of the data had already been public for a long time, but not in a form developers could use.

The essential deliverable of this effort, he pointed out, is not a set of apps but the catalyzation of an ecosystem of people and organizations that turn data into usable, accessible applications, as well as actively cultivating and sparking use and conversation among stakeholders, who include consumers, employers, providers, mayors, and public health officials. Publishing the data represents 10 percent of the work; marketing the data, 90 percent. Mr. Park quoted Tim O’Reilly on a fundamental principle about how data change people’s lives: Don’t make people find the data; make data find the people where they are already asking questions that data could help inform. The transformative act is not publishing data but being thoughtful about how you work as a member of the community to help catalyze an ecosystem. The process is increasingly driven and choreographed in a very self-propelled way by the community.

Dr. Francis commented on the “significant privacy questions” raised by Asthmopolis and pointed out that a misstep in this area “could be really serious for trust.” Mr. Park said they would love help and recommendations on privacy issues from NCVHS, and he proposed that the Committee participate in the second annual Community Health Data Forum on June 9, 2011. One specific issue that he flagged at the outset concerns guidelines and practices togovern the development and use of applications for crowd-sourcing of data. He assured the Committee that the developers involved in this initiative have “a big appetite to learn”; and NCVHS can help them “get smart about privacy.” Ms. Pritts suggested the proliferation of public use as another privacy topic.

Continuing his presentation, Mr. Park reported that Health 2.0 launched the Health 2.0 Developer Challenge on June 2, a public challenge to attract developers to build applications for specific purposes. To date, 12 organizations have issued challenges and more than 400 developers in 95 teams have registered. The first six winners were announced on October 7 at the Health 2.0 conference. This was followed by a series of code-a-thons in Silicon Valley to stimulate developer interest and work on health data. There is a growing buzz in the Valley about health data as an exciting frontier.

Also on October 7, HHS and the VA launched Blue Button, which facilitates access to and data downloading from the My HealtheVet and Medicare.gov portals.  There has been a huge uptake already, but there is still a ways to go to reach all potential users. This is another step in liberating data―in this case, for individual use. Mr. Tang noted that this raises another set of privacy issues, related to the new access to demographic and claims data and potential abuses by commercial interests. Mr. Park noted the Markle Foundation’s work on privacy policies and practices.  Dr. Francis cited a privacy issue of another sort, that Medicare has not been willing to share their data with all-payer databases, citing privacy concerns.

Mr. Park then described several other activities happening in this ecosystem, including the HHS Health Indicators Warehouse to be launched in January 2011 (with no individual-level data), the Library of Medicine’s API portal, and posting of an inventory of public and private health coverage programs on Healthcare.gov. In general, the idea is to rewire HHS processes to encourage the publication of data by all HHS agencies, an effort led by the Data Council. A supersite, healthdata.gov, will be deployed in January 2011 as a one-stop resource for federal data sets, with a link to an apps expo, an online community forum where people can talk about the data, and a list of additional (unendorsed but reputable) free data sites.

Dr. Green talked with Mr. Park about the range of data being linked in healthdata.gov in the context of a social determinants of health perspective. Mr. Park said they may not be “thinking extensively enough about the drivers of health.” Dr. Suarez informed him about the National Association of Health Data Organizations, and raised concerns about safeguards against the illegal linkage of data to re-identify individuals.

Dr. Carr told Mr. Park about the Executive Subcommittee’s interest in emerging data sources, community uses of data, and the learning health system project. She stressed the convergence and alignment of interests and the Committee’s excitement about developing a close relationship with Mr. Park and the projects he is spearheading, including participation in the June 2011 Forum. They agreed to be in touch after the meeting. Mr. Park concluded by mentioning a health data journalism workshop that HHS is planning with a University of Missouri Center, noting that journalists are a key part of the ecosystem because of their role in raising awareness, making stuff understandable, and sparking action. The overall goal, he said, is a “self-propelled” ecosystem of health data supply and use that creates escalating benefit. He expressed appreciation for this productive exchange with NCVHS and eagerness to work closely in the future.

ONC Update/IOM Preliminary Report―Chuck Friedman, Ph.D.

Dr. Friedman began with a few highlights from ONC. The Health IT Policy Committee has begun work refining its previous conceptualizations on Meaningful Use stages 2 and 3. A new workgroup will hold public meetings to formulate the nature of Stage 2 and telegraph what to expect to the industry. On Certification, there are now three authorized testing and certification bodies and 120 certified products. ONC grant programs (the regional extension centers, workforce programs, HIE state grants, and development of a privacy/security framework) are now in an early implementation phase. ONC is evolving a set of key theme initiatives around areas in need of pursuit, including clinical decision support and usability. Dr. Green expressed the Committee’s strong interest in how all this work will benefit local communities. Dr. Friedman replied that while “the theory is perfect,” communities’ ability to meet their goals depends on “a number of improbables”; however, he stressed the potential value of demonstrating what is possible.

He then briefed the Committee on new developments with the Rapid Learning Health System (RLHS). After clarifying the vision for interconnecting data-possessing entities for the purposes of quality study, public health activity, and research, with appropriate privacy protections and governance, ONC turned to IOM to convene a series of workshops to pursue the notion. IOM held events in July, September, and October, 2010, designed as a sequence: 1)the general vision, issues and challenges; 2) “the system after next,” a future orientation, and 3) strategies to achieve the vision. There will be a report (but not formal IOM recommendations) by the end of 2010.

Four themes emerged through this process: technical progress (crystallized in terms of the computer systems concept of ultra-large-scale systems), knowledge generation and use, patient and population engagement, and governance. The important extra-large system concept incorporates insights such as the necessity of designing a system that can recover and learn from failure. Dr. Friedman and colleagues Adam Wong and David Blumenthal co-authored an article, “Achieving a nationwide learning health system,” published in Science Translational Medicine 2; 1-3, 2010.

Report from Executive Subcommittee Strategy Session―Dr. Carr (slides)

Dr. Carr briefed the Committee on the previous day’s Executive Subcommittee session. Her presentation and the ensuing discussion provided the backdrop for subcommittee breakout sessions. The Committee’s current task is to identify a direction, roadmap and configuration for the next 18-24 months. Its overall goals are to make a timely and meaningful contribution to “where the puck will be” that aligns with national priorities, legislative mandates, emerging issues in health and health care, and the Committee’s resources and timeframes. Dr. Carr placed these challenges in the context of the NCVHS charter, current mandates, and NCVHS interests, together with the conceptual framing and long-term direction set by the visions for 21stcentury health statistics and Information for Health. The Executive Subcommittee meeting included a briefing by Mr. Scanlon on HHS strategic goals, objectives and priorities; these and the developments around emerging data sources and the potential impact of new data are further factors in the Committee’s planning.

Another important part of the environment is the Community Health Data Initiative, which juxtaposes “liberated” federal data elements with community-level resources and influences. Further, NCVHS wants to align with the ONC/IOM work on the Rapid Learning Health System (RLHS). Members talked briefly (on 12/1) about the extent to which the RLHS vision is framed in terms of health care or of health; Dr. Friedman said the initiative is designed to take advantage of the information available from EHRs, but it will not to be limited to those data. Dr. Carr said the IOM report on the RLHS will identify priority action targets that align with pastNCVHS work. Dr. Friedman has suggested stewardship/governance as one of several potential areas for NCVHS contribution. Others are privacy and security, standards work related to population health, and education. In general,Dr. Carr said, the Committee envisions a learning continuum that moves from data to information to knowledge and ultimately to transformation, with distinct issues and NCVHS priorities at every step of that process. One theme in the November 30 discussion was how transformation takes place―what is the value proposition, and how is change incentivized? Other emerging needs being considered for the NCVHS agenda include the work mandated by HIPAA and the Affordable Care Act (ACA), contributions to HHS dashboard development, and contributing to a privacy model definition for new ACOs. Ms. Milam stressed the absence of a common base of best practices to build from.

Dr. Steinwachs briefed full Committee members on preliminary plans, which were embraced the previous day by the Executive Subcommittee, for an NCVHS project on communities as learning health systems. The idea is to look at the potential for, and issues related to, expanding multi-sourced population health information for local uses to improve community health. After an initial workshop on community experiences, co-hosted by the population health and privacy subcommittees, a follow-up workshop will try to derive guiding principles and identify best practices for governance and privacy protection. Dr. Carr noted that the project has implications for all Subcommittee domains. Dr. Middleton pointed out the need to standardize metadata and establish methods for arriving at “reasonable inferences from mashups.” Dr. Friedman noted the culture change under way related to “the notion that data might be treated as a kind of commodity that can be mashed up.” He encouraged the Committee to look at standards for metadata as an important piece of potential policy work.

The group turned to a discussion of the optimal Committee structure for addressing emerging needs and enabling NCVHS to move expeditiously in today’s environment. Dr. Carr showed schemas (slides 19 & 20) proposed by Drs. Middleton and Suarez to assist the effort to align major work/project foci, areas of NCVHS expertise, and dimensions of information use (population health, personal health, health care). The overall idea is to enable the creation and functioning of flexible, cross-cutting teams that draw on all relevant areas of expertise for selected projects. Dr. Carr stressed the importance of having “a theme that draws everyone in” and that builds on NCVHS history, applies to emerging data issues, and is compatible with available NCVHS time and resources.

Ms. Greenberg affirmed that the Executive Subcommittee discussions were very helpful in identifying new directions and possible structures. She encouraged the Committee to keep the existing Subcommittee structure while also looking into new ways to configure around special projects and issues. The existing structure, she said, makes clear to the public the priority areas in which NCVHS works and supports stakeholders and mandated products. Dr. Middleton (who proposed changing “quality” to “performance” in the name of the Subcommittee on Quality) explained his notion of agile, cross-cutting SWAT teams. Dr. Carr suggested that subcommittees, too, may need to have less fixed membership (while retaining stable leadership), so that NCVHS members can move with fluidity from shift to shift. She also pointed out the need for economy and focus, to suit the work undertaken to existing capacities. There was a general convergence around the concept of a moveable structure in which work groups composed of diverse opinion and expertise form to carry out specific projects and products, while retaining some version of the traditional expertise-based structure.

Dr. Carr encouraged the subcommittees in their breakout sessions to deliberate on their roles in the emerging themes and to determine their part of the Committee’s direction for the next 18-24 months. Dr. Friedman urged the Committee to think about its potential contributions to the learning health system beyond the area of governance. The broad effort, he said, is “making the best use of liberated data,” including work on population health-related standards.

The group talked further about the constructs and terminology underlying rapid learning health systems, community health data uses, and the new epidemiology, largely to clarify the approach to NCVHS configuration. Dr. Overhage cautioned against over-categorization, since everything is about getting and using data; instead, he suggested a focus on the core building blocks, which are cross-cutting. Dr. Suarez commented that the important thing is to identify work streams for NCVHS. Regarding configuration, Dr. Francis proposed two types of groups: “traditional areas of expertise” and nimbler “groups that address special issues.” Ms. Greenberg called attention to the continuing relevance of the three overlapping areas represented in Information for Health ― population, provider, and personal ― as well as the vision for 21st century health statistics.

There was further discussion of NCVHS priorities and future work. Dr. Ferrer pointed out the significance of data capture and the role in it of the human-computer interface. Dr. Scanlon agreed, and stressed the important NCVHS role in directing the Department’s attention to the data issues required to fulfill its responsibilities and the gaps in data and in the methodologies for using data optimally. He pointed out the critical role of data capture in achieving all the other goals outlined above; and he asked in regard to health care reform, “Do we have the capacity to make those changes appropriately?”  Ms. Milam again called attention to the need to probe the mechanics of privacy and to identify best practices, especially in the population health area. She noted that no other group is doing this, while states and communities grapple with barriers to accessing rich data. Dr. Tang appealed for attention to what the new developments mean for consumers and patients. Dr. Green commented on the importance of knowing what others in the Committee’s work environment are doing, to ensure that it is using its time most effectively.

Dr. Middleton asked how the Committee’s effectiveness is evaluated, who assesses its work, and how it might evaluate itself. He added that marketing, communication and dissemination are critical aspects of high performance. Ms. Greenberg said the staff evaluates what happens to the Committee’s recommendations; and she suggested further discussion of this topic at a future Executive Subcommittee meeting. Finally, Dr. Francis urged that NCVHS structure a final planning session into all full Committee meetings, so that subcommittees do not just brief each other but take time to coordinate. Dr. Carr agreed. She asked the subcommittees to discuss the foregoing topics at their breakout sessions and return with a direction that fits with the general themes, plus action steps.

Developing a Quality Measurement Roadmap―Drs. Middleton and Tang (slides)

The Subcommittee on Quality held a hearing on creating a quality measurement roadmap on October 18-19. The co-Chairs presented key observations and possible recommendations as background for a letter that will be brought to the Committee at its next meeting. The Subcommittee embarked on the roadmap because current measurement is misaligned with the vision for health care reform. Today’s measures are provider-centric, weighted to inpatient care for cardiovascular and surgical conditions, and do not reflect patients’ interests, needs, and status.  The roadmap is designed to encompass what should be measured, for whom, and from whose perspective. The primary needs to be met are those of consumers/patients, who are not served by existing measures, and of providers. The secondary users whose needs must also be met include professional organizations, accreditation organizations and regulators; and payers and group purchasers. The October hearing elicited the perspectives of each of these stakeholder groups, with presentations by a series of panels composed of representatives of each one. (The minutes are on the NCVHS website.) The Subcommittee’s goal is to help create a roadmap for quality measures that will measure both individual and population health status using current and emerging electronically available data sources.

Important factors influencing the purposes and means of quality measurement include health care reform, which increases the focus on quality and defines it more broadly; the emergence of new data sources; and the growing commitment to patient-centricity. Quality measurement and feedback are central to effective clinical practice.  Assessment will increasingly focus on patient experience and value and take advantage of health IT.

The October hearing testimony showed the gaps between available quality measures and the needs of key stakeholders. It led to the conclusion that the way measures are focused and developed needs to shift toward the patient’s perspective and make it possible to assess progress toward health care reform. Further, opportunities exist to improve the use of current and emerging sources of electronically available data.

The Subcommittee on Quality focused on three provisional recommendations, which Dr. Middleton discussed along with the reasons for each one. The first is to shift the focus to support the needs of patients as the primary determinant of their own health and wellness. He noted that this represents a paradigm shift, adding that the Subcommittee wants to make sure the shift in focus does not increase the reporting burden for health systems and providers. The second provisional recommendation is to develop improved measures of quality, cost, value, accountability, and experience that are patient-focused and that assess the interaction of the patient with the health care team and health system. The third is that regulators, certifying organizations, and payers should be actively involved in coordinating information requirements to support creation of measures for assessing the quality, efficiency, and competency of the health care system.

The Subcommittee also identified a number of potentially controversial topics. The first is the proposition that patients and providers should be the focus of measure development. It also points out that providers use different measures for internal quality improvement and for public reporting, and wonders if a set of measures can be used for both purposes. Other issues that require thought concern the variable reliability of patient-generated information, how to minimize burden while getting more individualized information, what perspective to use for measuring cost, and the extent of provider accountability for patient care.

Discussion

Committee members and staff raised and discussed these topics:

  • The difficulty of establishing valid individualized treatment goals.
  • The relationship between this NCVHS effort and other quality measurement initiatives under way. (Answer: This one aims to set a new, consensus-driven general direction.)
  • The need to distinguish between more individualized quality measurement and the information patients need to choose among providers.
  • The fact that not many consumers currently use quality information to choose providers and made health care decisions.
  • The nature of the effort to produce quality information that is meaningful to patients.
  • The question of how actionable the proposed recommendations are, and where the Secretary’s influence resides in relation to the recommended measurement priorities and approaches.
  • The importance of measuring outcomes.
  • The challenge of reconciling consumers’ and payers’ needs and perspectives.
  • The need to clarify the recommendations and the reasoning behind them―for example, harmonizing the purposes and needs of multiple quality measurement stakeholders.
  • The importance of recommending research (e.g., on a single set of measures for both clinical improvement and reporting/accountability purposes).

The Subcommittee will continue to work on its letter and recommendations based on the foregoing discussion.

Final comments and charge to subcommittees―Dr. Carr

Dr. Carr outlined these process recommendations from the Executive Subcommittee meeting, to improve clarity and efficiency:

  • All Committee members should be informed about Subcommittee hearing plans early enough to provide input.
  • Subcommittee members are responsible for reviewing materials and notes from meetings/hearings they miss.
  • Staff will help with record-keeping for version control and tracking comments. Members are encouraged to use SharePoint.
  • Letters and recommendations must be reviewed by the Executive Subcommittee before going to the full Committee.
  • A time will be set aside for regular monthly phone calls, as needed.
  • Full Committee discussion of proposed documents should focus on the recommendations.

As they recessed into breakout sessions, Dr. Carr encouraged the subcommittees to return the following day with actionable plans that build on the rich discussions of the last several hours.

―Day Two―

Overview of Upcoming Standards: A Tale of Two Transactions (slides)
―Lorraine Doo, Michael Albright, Drs. Suarez and Warren

To prepare members for forthcoming recommendations mandated by ACA, the co-chairs and staff members of the Subcommittee on Standards briefed the Committee on Health Care Payment and Remittance Advice (835) meets the Automatic Clearing House (ACH) Electronic Funds Transfer (EFT). The briefing covered three topics: 1) the charge to NCVHS; 2) how health care payment and remittance advice and money are transmitted; and 3) what problems standards and operating rules would solve. Mr. Albright gave the overview, supported by detailed slides. (See transcript for details of this presentation.) The Subcommittee will hear testimony on the two transactions―Health care Payment and Remittance Advice (called the electronic remittance advice, or ERA) and the EFT―at a December 3 hearing. The two are “inexorably” linked and must be coordinated in terms of standards and operating rules.

The ACA charged NCVHS with recommending a standard for the EFT, an operating rule for the EFT transaction, and an operating rule for the ERA. The Secretary is required to adopt a standard for the EFT, and operating rules are mandated for both of these and other transactions, with some specific stipulations.

Mr. Albright explained how plans send money to providers and how they send payments and remittance advice to providers today. (The ERA explains why the amount paid may be different from what the provider billed.) Money or funds are sent separately from the ERA, and this is a financial transaction; the ERA is a health care transaction, the electronic version of which is standardized under HIPAA. (Today they are sent either by mail or electronically. Today, about half of all health care payments are made with paper checks.) Mr. Albright described how electronic funds transfer works (slide 7 explains the EFT “lingo” and illustrates the process and elements of the EFT). He likened the Automated Clearing House (ACH) Network  to “the plumbing” and the EFT to the water.

An EFT HIPAA standard will not require a change in how banks do business with banks; but there is no clear standard for a health plan to initiate an EFT through the ACH Network to facilitate re-association or matching of payments to remittance advice. Existing standards and practices do not mitigate the paper-based systems or the need for significant manual efforts.

The best way to re-associate data with dollars is to use an EFT format. No standard is clearly mandated nor being used on a wide scale that would enable transmission of both payment and some or all of remittance advice. Automated re-association is where administrative simplification and cost savings will happen.  Privacy issues arise in automatic reconciliation because some data that may be considered protected health information may travel through at least one financial institution.

Slide 11 illustrates how the EFT standards and operating rule could address industry challenges. The EFT standard will probably focus on EFT initiation; the EFT operating rule will theoretically make the 835 more attractive and easier to use. Issues for discussion include the intersection of the HIPAA standard and NACHA (the Electronic Payments Association) rules; the possibility that financial institutions will become business associates and covered entities; potential enrollment obstacles for providers; and plans’ legacy systems.

Dr. Suarez offered comments on context and what the Subcommittee expects to hear at the hearing. First, deciding about a standard and operating rules for the EFT will affect communication between the health plan and its bank, and have an impact on how providers receive information and can re-associate. This does not involve telling banks how to do their business. Second, the 835 is a massive, complex transaction. The operating rules will apply to the 835 and across the whole transaction of the 835, not just EFT; but the 835 has to do with a lot of other things, too, that the operating rules will need to address―e.g., variability in remarks and codes.

Committee members briefly discussed these topics. Asked who will be affected by the changes, Dr. Suarez said everyone will be. Dr. Warren added that the work will be different, and both sides will deal with data differently. Once everyone does the transactions electronically following standards, the ROI is expected to increase. One purpose of the forthcoming hearing is to learn how people will be affected. Dr. Steinwachs asked about the impact on and potential benefit for patients; Dr. Warren replied that at this point, they are not in the loop, but this might be something to look at. Dr. Francis asked about the privacy issues, prompting some discussion. She expressed concern about banks becoming covered entities with access to PHI. This will be one of the points of discussion at the hearing. Dr. Tang raised the “minimum necessary” principle.

Update: CMS Innovations and Initiatives―Ms. Doo

Ms. Doo returned to the topic of the Blue Button for MyMedicare.gov, mentioned by Mr. Park. The project is run out of the Office of External Affairs. Despite the absence of promotion, 25,000 individuals have downloaded the information to their computers, and people are learning to enter and control their own information. There is no diagnostic information, but it is a start. CMS has been working with AHIMA, whose website myPHR.com has many good features. Its search component will include a blue button selection so that PHR vendors can upload it and import data from other sources to build a personal health record. This is a way of giving people access to more services and information. Microsoft has already stepped forward to develop such an application.

Dr. Francis asked about disclosure information or restrictions on PHR functionalities, and Ms. Doo said her team has talked about that issue in relation to PHR certification. CMS has standards for PHR vendors regarding privacy policies, and there are caveats to individuals regarding what to look for or avoid on the CMS and AHIMA websites. There are no claims data for Medicare Advantage or Part D on MyMedicare.gov; only fee for service people can use the website. Dr. Ferrer said that the VA is active with Blue Button, which is part of its PHR. 80,000 people have downloaded it through My HealtheVet.

Turning to the HITECH program for meaningful use, Ms. Doo said the registration process begins in January 2011, with a single system for Medicare and Medicaid providers. Strenuous testing is under way. Incentive payments are to begin in May 2011.

There are two outreach efforts for ICD-10 and 5010, with testing set to begin in January based on the regulations for “original 5010.” One outreach effort is for Medicare, and CMS is doing outreach and education for the industry at large. There is concern about the conjunction of ICD-10, 5010, and health care reform, but no one is saying they won’t be able to at least begin the testing process, and there is evidence of a lot of planning. Forthe ACA, regulations for the plan identifier are expected to go out in July, and an interim final rule for operating rules is slated for June publication, depending on what happens at tomorrow’s hearing. This all represents a tremendous amount of work related to business processes, outreach, and systems work. In addition, the Administrator’s offices are actively monitoring what is going on with health care reform.

Discussion

There were questions about mapping to ICD-10. Regarding mapping with SNOMED CT, Ms. Greenberg said the collaborative arrangement between IHTSDO and WHO is being accelerated, and work is under way on this. Once the ICD-10-to-SNOMED CT map has been agreed upon, the NLM and NCHS will produce a SNOMED CT to ICD-10-CM map. The target date for completion of the first stage is around the end of 2011. ONC is very supportive of this effort. Members agreed to revisit this question in February.

Members also raised questions about consumer education about using Blue Button, including caveats about possible inaccuracies in the claims data being put at people’s disposal and privacy risks associated with Blue Button.Ms. Doo said she would convey the Committee’s comments to the group working on this. Another question concerned potential learning from the demonstration projects about privacy findings related to Smartphone PHR apps. Members asked for links to published reports.

Update: ICF and Public Health Data Standards Consortium―Ms. Greenberg (slides)

The agenda book lists activities NCVHS helped sponsor in connection with the 60th anniversary. One was the 2010 meeting of the North American Collaborating Center (NACC), the 15th annual conference on the International Classification of Functioning, Disability and Health (ICF). The purposes of the meeting were to review and accentuate current debates about the degree to which ICF can be applied in specific disciplines, to raise awareness about the alignment of ICF coding with current health informatics initiatives, to provide an educational opportunity about ICF coding, and to enable enhanced resource sharing between American and Canadian scientists and government agencies.

Dr. Carr was a keynote speaker, and pledged that NCVHS would continue to monitor this topic, which has relevance for the patient-centered focus of quality measures as well as the NCVHS domains of standards, privacy, and population health. She also reviewed the 2001 report on classifying functional status. Former NCVHS member Dr. Iezzoni had told the Committee in 2009 that she thought the stars were aligned for progress on the ICF.

Ms. Greenberg gave a status update on ICF, reporting success in such areas as getting ICF into the standards infrastructure and recognition in HL7 standards and a recognized external code set in the X12 standards. The next step is for people to use it. The ACA also includes references to functional status. A focus on functioning is “permeating the environment,” she said, but most of the information on it is captured in free text, not codified. She described the classification, and called attention to the topics for continued research and demonstration projects that were identified in 2001. NCHS has begun holding webinars on ICF coding, and an e-learning tool will be released by the World Health Organization in several months along with an ICD-10 e-learning tool. Ms. Greenberg concluded that there are clear steps for moving forward, but no resources for doing so. NACC welcomes the opportunity to explore next steps with NCVHS.

Member discussion focused on how the potential of the ICF can be realized as well as challenges and concerns in this area. Topics included ways to “leapfrog” by eliciting information on functional status from patients, and the potential clinical utility of this information. Dr. Warren said the American Physical Therapy Association has just adopted the ICF as their terminology; she stressed ICF’s emphasis on functioning, not disease and only disability. Dr. Green hailed the progress in this area, albeit small, and stressed the central importance to NCVHS of classifications for clinical care and scientific inquiry. The next step is to learn about and make progress on patient-centered care, which the ICF can facilitate. He proposed that NCVHS put classification progress on its agenda as a routine item. Dr. Steinwachs noted the need for research on how payment mechanisms can be used to incentivize these practices. Dr. Ferrer is leading a patient-centered medical home national project at the VA, and he offered to use its capacities in some way, for example, for a demo. Dr. Francis noted the inclusion of social factors in a functional status assessment. She also noted the privacy issues involved. Dr. Scanlon said there is a big difference between using this information for statistical purposes versus for payment or performance purposes and the issues relating to the motivation of the respondent, among other factors. He also pointed out that the Committee needs to focus on the entire US population when it thinks about large scale solutions and outreach. Dr. Middleton noted the connections between the foregoing conversation and the quality roadmap conversation and the need for practicality and “the right level of vision.”

Ms. Greenberg gave brief comments on the Public Health Data Standards Consortium (PHDSC). Because the Consortium and NCVHS share an interest in maximizing health IT standardization and meaningful use of health IT in public health, she asked that they present at the February NCVHS meeting. The key message is that the same effort that is going into health IT in the clinical arena is not matched in the public health arena. Dr. Suarez called the Subcommittee on Population Health’s attention to the Consortium’s next steps and the efforts to prevent a digital divide between these two worlds. There is a risk of having a very robust clinical information world and a public health world with no capacities to receive information. Initiatives to fund and support enhanced IT in public health is one priority; another is the public health IT architecture reference model, to help public health agencies understand how to use IT resources interoperably inside their walls, transcending silos. A third priority relates to educating the public health workforce in informatics, IT, and data analysis. He expressed hope that the Subcommittee on Population Health would include these priorities in its agenda.

Subcommittee Reports and Next Steps

Co-Chairs: Dr. Carr announced two new subcommittee co-chairs, replacing retiring members: Dr. Overhage will co-chair the Subcommittee on Privacy, Confidentiality and Security with Dr. Francis, and Ms. Milam will co-chair the Subcommittee on Population Health with Dr. Green.

Subcommittee on Population Health: Dr. Steinwachs reported that the Population Health Subcommittee and the Subcommittee on Privacy, Confidentiality and Security plan to focus on community health information systems and efforts to facilitate the development and use of population health data in the community, with attention to standards issues, as well. The first step will be a discovery process to understand what is happening in leading-edge communities around the country, with a one-day workshop on February 8. This project is on a fast track. NCVHS members, staff and friends will be asked to nominate candidates for the panels, who will be invited before Christmas. Susan Kanaan will talk with the selected panelists to gather background information prior to the workshop, using a structured set of questions. Ms. Jamison will provide staff support.

Dr. Green added that the Subcommittees are committed to taking a community perspective, and this is a scoping exercise using an exploratory hearing to listen to local experiences. Dr. Hornbrook suggested watching for the economic impact of high-deductible health plans and evidence of price discrimination against low-income people.

Subcommittee on Privacy, Confidentiality and Security: Dr. Francis reported that in the aforementioned exploration, the Subcommittee will be looking for best privacy models and practices in the use of data for community health. It is particularly interested in new data sources, including crowd sourcing, in data linkages, and in what privacy models are being used to engender trust. She added that Mr. Park has expressed interest in the Committee’s advice on the privacy issues in his domain. She wondered if the Department would also like advice about accountable care organizations and privacy protection; and she noted the challenges of getting “the public health voice” heard in meaningful use discussions. These topics represent a three-year work plan for the Subcommittee. She suggested that Joy Pritts be on the Subcommittee’s distribution list.

Mr. Land said the Joint Public Health Informatics Taskforce is spearheading a coordinated approach on public health and meaningful use and has a good relationship with CDC. Ms. Greenberg noted that Dr. Tang’s policy group had an excellent hearing on where public health fits with respect to meaningful use. Dr. Tang added that the group was happy to try to get some connectivity, though it is finding barriers related to the lack of funds and the silos. There is no lack of interest.

Subcommittee on Quality: Dr. Middleton said the Subcommittee envisions a series of hearings over two years, focused on the areas outlined in the quality measurement roadmap. The Subcommittee wants to partner with other NCVHS subcommittees on a new, cross-cutting model aligned with major federal initiatives, with a learning health system as the goal. NCVHS will focus on extending the quality measurement framework to include a patient/consumer-centered focus on health improvement, with functional status as an integral part. The Subcommittee will focus attention on notions of health care system performance, efficiency, efficacy and value, and also on simplifying the use of health care data for both clinical/administrative and oversight/accountability purposes. One major theme is incorporating public data sets, a topic that implies potential collaborations with other subcommittees. On that theme, Dr. Green expressed hope that members from all subcommittees would attend the February 8 workshop.

Full Committee Process: Dr. Middleton proposed that each Subcommittee develop a 2- to 3-year roadmap. The group discussed a template for assigning responsibility for planning hearings to one or two subcommittees while expecting inputs and participation (at least virtual) from all subcommittees. Members agreed on the priority of keeping Executive Subcommittee members, at least, apprised of the planning for these meetings, and of sharing agendas with all members. Ms. Greenberg said there would be more use of webinars in the future. She asked subcommittees to develop their calendars and their “must” and “wish” lists for the next two fiscal years.

Subcommittee on Standards: Dr. Suarez reported that the Subcommittee sees the 10th annual report to Congress on HIPAA as an opportunity to provide analysis and assessment of the current status of standardization . It hopes to convene a hearing on the status of 5010 and ICD-10 code sets and then do an industry-wide gap analysis. It plans to send a letter to Congress rather than a report in February 2011 on the occasion of the 10th anniversary that promises an in-depth analysis and environmental scan, with a full report by the end of the year. Dr. Warren explained that the idea is to identify not just accomplishments but barriers.The Subcommittee will also be working on its mandated requirements, with a letter in February on recommendations from the December 3 hearing. It expects to hold hearings in 2011 on claims attachments and on an all-payer claims database and public health standards. A set of recurrent activities begins in 2012, with hearings every other April to assess the status of the industry with respect to transactions and operating rules and standards needs, with a report in July. This is likely to require two or three hearings a year for the next 2-3 years. Dr. Warren said the Subcommittee will be looking at ways to reduce the number of meetings required to support the regulations development process, which is on a fast track.

Dr. Carr then adjourned the meeting.

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

/s/                                                                        February 9, 2011

Chair                                                                    Date