All official NCVHS documents (including meeting transcripts) are posted on the NCVHS website (http://ncvhs.roseliassociates.com)

Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

June 21 – 22, 2012

Doubletree Hotel
8727 Colesville Road
Silver Spring, MD 20910

Meeting Minutes


The National Committee on Vital and Health Statistics Subcommittee on Privacy, Confidentiality and Security was convened on June 21-22, 2012 at the Doubletree Hotel in Silver Spring, MD. The meetings were open to the public.

Present:
Committee members:

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

Absent:

  • Raj Chanderraj, MD, FACC
  • James Walker, MD, FACP

Lead Staff and Liaisons:

  • Marjorie Greenberg, NCHS, Exec. Secretary
  • James Scanlon, ASPE, Exec. Staff Director
  • Robert Tagalicod, CMS liaison

 

 

 

 

 

 

Others:

  • Debbie Jackson, NCHS
  • Katherine Jones, NCHS
  • Marietta Squire, NCHS
  • Joy Pritts, ONC
  • Jodi Daniels, ONC
  • Denise Buenning, CMS
  • Lorraine Doo, HMS
  • Hetty Khan, NCHS
  • Nicole Cooper, NCHS
  • Susan Queen, ASPE
  • Matt Quinn, NIST
  • Susan Baird Kanaan, consultant writer
  • Carol Bickford, American Nurses Assn.
  • Lee Barrett, EHNAC
  • Peter Barto, PWC
  • Annette Gabel, Express Scripts
  • Thomas Bizarro, First Data Bank
  • Steven Lazarus, Boundary Information Grp.
  • Lauren Fleeger, VA
  • Tammy Banks, AMA
  • Michael deCarlo, BlueCross BlueShield
  • Devin Zatorski, BCBS
  • Jeanette Thornton, America’s Health Plans
  • Emily Tsao, DHHS

Working Group on Data Access and Use members present at NCVHS meeting:

  • Bill Davenhall, ESRI
  • Leah Vaughan, Health Policy Group
  • Kenyon Crowley, Univ. of MD
  • Josh Rosenthal, RowdMap

 

 

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

ACTIONS

  1. NCVHS unanimously approved a letter on data standards for socioeconomic statusin HHS surveys
  2. NCVHS unanimously approved a letter on improving the information available to support health consumers’ decision-making.

Updates from the Department

–Mr. Scanlon, ASPE

Mr. Scanlon briefed the Committee on the HHS Data Council’s work on planning, data standards, the Health System Measurement Project, the Health Data Initiative, and integration and alignment.

–Robert Tagalicod and Denise Buenning, CMS

Mr. Tagalicod reported on the progress on provider adoption of EHRs under Medicare/Medicaid, which exceeded expectations. Ms. Buenning reported on version 5010, administrative simplification, and ICD-10 code sets. Mr. Tagalicod announced the creation of the Office of Enterprise Management, a consortium of offices across the Department that includes OESS, the Office of Civil Rights, and others. This is another effort at coordination and alignment. Finally, he emphasized CMS’s commitment to the public-private relationship, including through its partnership with NCVHS.

–Joy Pritts, Chief Privacy Officer (slides)

Ms. Pritts discussed the privacy and security issues in meaningful use and governance, described several privacy and security policy initiatives, and outlined her office’s research and internal activities.

In the discussion period, Dr. Green asked all the presenters, “Of what use is NCVHS to you?” Their responses stressed the NCVHS role as a neutral and level forum for the exchange of information, a source of subject-matter expertise, an honest broker, and a convener and integrator. They also expressed their desire to improve collaboration with NCVHS.

Subcommittee on Population Health: SES Hearing Letter — Ms. Milam, Dr. Green

In March, the Subcommittee held a two-day hearing to understand measurement of socioeconomic status and explore possible recommendations to the Secretary on minimum data standards for collecting this information in HHS surveys. Because of the complexity and variability of the subject matter, the Subcommittee concluded that it is too early to offer detailed recommendations about specific standards; instead, they recommend additional efforts to explore the gaps in data collection and analysis for measuring SES on health surveys, particularly to improve understanding of health disparities. The letter confirms that education, income and occupation are the key components necessary for the measurement of SES and its relationship to health. Mr. Scanlon said the hearing was exactly what the Department had hoped for — a “state-of-the-art review of where we are and where we’re heading.”

Ms. Milam read aloud the recommendations, and several members suggested modifications.

Based on this discussion, the letter was revised by the Subcommittee, presented for review on day two of this meeting, and approved as revised.

Subcommittee on Quality: Steps to Improve Support for Consumers’ Decision-Making — Dr. Tang

In February, the Subcommittee held a hearing on “Measures that Matter to Consumers,” and found a more fundamental issue: consumers do not have access to the basic information they need to choose health plans and providers and make decisions about treatment options. To address this gap, which limits patient-centeredness and consumer choice, the Subcommittee decided to seize the opportunity presented by the ACA mandate for federally supported health insurance exchanges by recommending ways for the exchanges to provide consumers with usable information. Dr. Tang read aloud the draft recommendations. This led to a wide-ranging discussion and some suggested modifications to the letter.

The letter was revised based on this discussion and presented for review on day two of the meeting, when it was approved as revised.

Subcommittee on Privacy, Confidentiality and Security: Briefing from April 17-18 Hearing — Ms. Kloss

To extend the work of the NCVHS community health data report with respect to the needed privacy and security framework for communities, the Subcommittee held a hearing in April on “Next Steps for Community Data Use.” The Subcommittee is drafting a letter for the full Committee to review September. It will set out a framework and recommendations for stewardship of health information when used by communities to improve local health.

New Working Group on Data Access and Use — Mr. Scanlon

The new Working Group is composed of NCVHS members and consultants, following the model of the Health IT Policy Committee and Standards Committee.The new group has been convened to bring the developer community for appsand technology together with HHS data people and data users to generate advice on “how HHS should go” and where improvements are in order. The consultants are seen as a potential bridge to developer communities, and ultimately to new groups of data users. Dr. Carr will chair the Working Group, which will hold its first meeting immediately after the NCVHS meeting. (See separate meeting summary.)

Members discussed the functional relationships between the Working Group and existing NCVHS subcommittees, which Mr. Scanlon said would take shape over time. Dr. Cohen urged that state health departments and community-based organizations be included among the target audiences. This is an opportunity, he observed, to push the feds to help states figure out how to improve access to data and develop their Web-based query systems.

Approaches to the Committee’s Work — Dr. Carr

Dr. Carr offered assurances that NCVHS values collaboration and will continue to play a leadership role in fostering transparency, encouraging participation by all industry segments, and providing a level playing field for all stakeholders. At the same time, she pointed out that the Committee — and especially the Subcommittee on Standards — has been “running a marathon like a sprint,” and “the end is not yet in sight.” This raises questions about priorities. She invited the Committee to consider what questions the Executive Subcommittee should address at its August 9 retreat regarding what space NCVHS should be in, how it might go about its work, andwhat role it might play.

Prior to the full Committee discussion, Dr. Suarez and Mr. Soonthornsima briefed the group on the thinking about NCVHS standards responsibilities.

Standards Briefing on ACA Section 10109 — Dr. Suarez, Mr. Soonthornsima (slides)

The Subcommittee sees the issues raised in ACA Section 10109 as an opportunity to “step back and step up” and to look at things more holistically in terms of priorities and to discern the best way to proceed over the next few years. The Subcommittee has identified two alternative strategies on which it wants input from the full Committee. One is to organize stakeholder groups such as tiger teams to address each of the topics and bring recommendations to NCVHS. The other is to tell the Secretary that NCVHS is deferring action in these areas.

Dr. Scanlon noted that the limited bandwidth of NCVHS resources is another important consideration. Also, it is a growing challenge to try and realize the potential of HIPAA in today’s environment, which has its own huge demands. The June 20 hearing highlighted the need to sort out problems with claims information and the need to inform the bigger discussion under way, in order to have the greatest possible impact. Members discussed these issues and challenges, and Dr. Carr asked them to keep the themes in mind in their Subcommittee planning.

Remarks on Data Access and Use — Todd Park, U.S. Chief Technology Officer

Mr. Park expressed joy and excitement at the “historic moment” marked by the impending first meeting of the new Working Group on Data Access and Use. He briefed the group on new developments in the open health data movement and trends in innovation, all of which provide the context for the Working Group. He outlined the following questions for the new Working Group:How to bridge the gap from early ideation and prototyping to true production testing or beta testing and scaling; how to address the large and growing gap between the need for and the supply of health data analyst expertise; and where we need to “place our bets” in terms of health data supply improvement, in view of the most compelling social business case.

NCVHS at NCHS National Data Conference — Ms. Greenberg

NCHS holds a free conference on health data every two years that typically has more than a thousand participants. This year’s meeting will be August 6-8, in Washington, DC. One of the scientific sessions will highlight the NCVHS report, “The Community as a Learning System for Health: Using Local Data to Improve Local Health.”

Standards Subcommittee Action Planning — Dr. Suarez (slides)

Dr. Suarez began with an overview of the Subcommittee’s recent actions, work plan, and next steps. In its breakout session the previous day, the Subcommittee agreed to wait to hear from CMS before deciding how to proceed on ACA Section 10109. Claim attachments will be one major focus for the Subcommittee, as well as for the full Committee. The Subcommittee and CMS will work together on a national strategic plan for moving standards forward.

Dr. Suarez then briefed the Committee on claim attachments. NCVHS held its first hearing on the subject in 1998 and submitted letters to the Secretary in 2004 and 2005. Proposed regulations, which were very detailed, were published in September 2005, but there have been no developments since then. Now, the ACA says HHS has to publish the final regulation by January 1, 2014. The Subcommittee will hold monthly calls between now and December to discuss these issues, and will meet in person in September and November.

Dr. Carr noted the powerful juxtaposition between these longstanding challenges and the emerging “new world” articulated by Mr. Park, raising questions about how NCVHS does the work assigned to it, marries parallel processes, and adds value to what it hears from industry and others. The Committee, she stressed, has “got to be an integrator.”

At her invitation, members discussed these issues. Dr. Cohen described the NCVHS niche and mission as translating numbers and data into actionable decision-making tools for individuals, communities, and providers, to help them make better decisions. Dr. Nichols characterized Dr. Carr’s overview as “telling us to skate where the puck is going”; several members expressed agreement with this principle. Dr. Suarez concluded by saying that NCVHS will have to work on multiple timelines and multiple processes, addressing short-term needs while also moving toward long-term goals.

Additional Subcommittee Reports

(See the brief summaries at the end of detailed summary, below.)

DETAILED SUMMARY

–Day One–

Call to Order, Opening Remarks — Dr. Carr

Dr. Carr called the meeting to order. Following introductions, she reiterated the Committee’s commitment to collaboration and transparency and said that in the afternoon, NCVHS would discuss how to manage the competing demands on its time and prioritize, teeing up an Executive Subcommittee retreat to be held in August.

Updates from the Department

–Mr. Scanlon, ASPE

Mr. Scanlon briefed the Committee on several areas of data policy activity at HHS, starting withplanning. The overall strategic plan is a living document; and there are also strategic plans in several areas including tobacco control, health care disparities, quality, and prevention. There are initiatives in many areas including global health and early childhood development.

Mandates on data standards in the Affordable Care Act (ACA) led to development of a data strategy by the HHS Data Council. The Secretary adopted aninitial set of recommendations on race, ethnicity, primary language, seand disability status in Fall, 2011. At the Department’s request, NCVHS held a hearing on the best thinking and practices about socioeconomic status(SES) measures in March, and will bring forward a letter with recommendations on this topic during the present meeting. The Data Council will also be looking at other data items with an eye to data standards.

The Health System Measurement Project focused on 10 domains/content areas related to health system change and performance. Each has 5-10 indicators, developed through a consensus process. Information on the project, which is about describing changes rather than explaining them, is posted on the ASPE website.

Regarding the HHS data strategy, the Data Council was asked to look critically at all the major HHS data systems with respect to efficiency, coordination, and the progress in or prospects for filling gaps. Another key question was how to align or integrate various data resources. Several projects are involved.

The Department’s Health Data Initiative involves several initiatives to speed up the release of HHS data, including those from all major surveys. Some demonstrations and pilots are under way related to speeding up access to administrative data. Commercial and nontraditional data sources, e.g., all-payer claims data, are also being looked at. Mr. Scanlon commented on the integration and alignment efforts, noting that this begins with data standards. The Health Data Initiative is also about making data available in an easier form and advertising data availability, and there are several initiatives under that rubric. The Health Indicators Warehouse has been updated and expanded.

Discussion

Noting the confusion at the state and local level with respect to HHS standards, Dr. Cohen urged that NCVHS be involved in the discussions about data standards. Dr. Suarez pointed out the key role of standards development organizations and their established processes.

–Robert Tagalicod and Denise Buenning, CMS

Mr. Tagalicod, who directs the CMS Office of eHealth Standards and Services (OESS), noted that CMS conducts the activities he will describe in collaboration with ONC. He reported the progress on provider adoption of EHRs under Medicare/Medicaid incentive programs, which exceeded expectations.

Ms. Buenning, Acting Deputy Director of OESS, reported on version 5010, administrative simplification, and ICD-10 code sets. The enforcement discretion period for version 5010 ends on June 30. There are several administrative simplification initiatives, with challenging Congressional timelines for standards and operating rules. CMS is preparing a final rule to address comments on the Health Plan ID, ICD-10 code set implementation and changes in the National Provider Identifier.. It is also working on operating rules for electronic funds transfer and remittance advice standard, and gathering intelligence to craft a regulation on health plan certification. It has received 565 comments on ICD-10 code sets, advocating the full gamut of options.

Mr. Tagalicod reported on the creation of the Office of Enterprise Management, a consortium of offices across the Department that includes OESS, the Office of Civil Rights, and others. This is another effort at coordination and alignment — across HITECH, administrative simplification, 5010, ICD-10 code sets, and quality, for example — to reduce the administrative burden and improve communication and collaboration. He emphasized CMS’s commitment to the public-private relationship, including through its partnership with NCVHS.

–Jodi Daniel, ONC

Ms. Daniel affirmed that 20 percent of eligible U.S. professionals have now adopted EHRs, with the regional extension centers playing a major role in supporting adoption. In addition, 48 percent of eligible hospitals and critical-access hospitals are being paid through EHR incentive programs. She described the regulatory efforts around meaningful use stage 2 regulations and state-of-certification rules; and ONC is already thinking about stage 3, working with the Health IT Policy Committee. It has held two hearings on the subject, on quality improvement and patient-generated data.

ONC’s nationwide health information network governance RFI is an extended open comment period, until late June. Ms. Daniel highlighted the goal of creating a pathway for trusted health information exchange; and ONC is also looking at a process for validating entities and a standards-classification process. It will develop an NPRM based on the comments generated by the RFI.

ONC is also working hard on safety and usability, and will release a safety plan by early November. It has identified usability as an issue key to safety, and co-hosted a workshop with NIST on these issues. ONC is committed to enabling rapid standards development, to enable interoperability. It has kicked off a Health eDecisions initiative to put clinical practice guidelines in standard formats that can be shared on EHRs; and it’s working on longitudinal coordination of care and of long-term post-acute care. It is doing a lot of work on behavioral health quality measures and the incorporation of behavioral health into primary care.

Finally, it has created a new Office for Consumer eHealth, and will do a national search for the Director. Its consumer ehealth program is nearly a year old, including a consumer-oriented initiative on cancer care, a patient- access summit at the White House, and a blue button challenge. Overall, the idea is to help consumers better understand health IT and the reasons for EHRs. Another initiative involves a video challenge in which patients tell their own stories.

–Joy Pritts, Chief Privacy Officer (slides)

Ms. Pritts discussed the privacy and security issues in meaningful use and governance. OCR has alerted people to the need to do a security risk analysis for meaningful use stage 1. It is working to make security as easyas possible for providers, and is also encouraging adherence to similar standards among similar entities.

She briefly described several privacy and security policy initiatives, including:

  • State health information exchange privacy and security program information notice
  • National Strategy for Trusted Identities in Cyberspace (a priority administrative initiative)
  • HITECH modifications to HIPAA
  • Work with CMS on ACA rules

In addition, the Office of the Chief Privacy Officer also has several research and internal activities, including:

  • Data Segmentation for Privacy Initiative
  • eConsent Trial, a pilot project
  • design of a mobile health portfolio
  • consumer attitudes survey (part of the mobile health portfolio)
  • measuring consumer trust of privacy and security over time as adoption increases

Discussion

Dr. Green asked the presenters, “Of what use is NCVHS to you?” This prompted responses from each of them. Ms. Buenning stressed the fact that NCVHS provides a neutral and level forum for the exchange of information, as well as “vast” subject-matter expertise.

Mr. Tagalicod observed that NCVHS is seen as an honest broker, without an agenda, and it serves as a convener and integrator. He cited as a good example the hearing held by the Subcommittee on Standards on June 20, which prompted further thinking at CMS about “doing this better with NCVHS.”

After noting the challenges of coordinating ONC’s Policy and Standards Committees, which occupy much of her attention, Ms. Daniels suggested periodically looking at the subjects on which ONC still needs input that align with the NCVHS agenda. She expressed a desire to send a staff member to NCVHS meetings in their entirety, to improve the collaboration.

Ms. Pritts noted that some NCVHS members serve on ONC’s Privacy and Security Workgroup to facilitate coordination. She expressed particular concern about progress on standards for EFT and ERA, which her office needs to understand better in terms of theassociated privacy and security issues.

Member Transitions — Dr. Carr

Dr. Carr noted that the terms of Dr. Hornbrook and Dr. Middleton have ended, and they chose not to extend because of competing responsibilities. She acknowledged their many contributions. Ms. Greenberg said that there probably would be a dinner for retiring NCVHS members in conjunction with the September meeting. Dr. Carr said former Chair Harry Reynolds plans to attend, because he would have been part of that “graduating class” had he remained on the Committee.

Subcommittee on Population Health: SES Workshop Letter — Ms. Milam, Dr. Green

Ms. Milam reported that in March, the Subcommittee held a two-day hearing to understand socioeconomic status and explore possible recommendations to the Secretary onminimum data standards, as requested by HHS at the direction of the ACA.

Dr. Green observed that this area is highly complex. The Subcommittee determined that the standardization effort should focus on education, income, occupation, and family size and relationships. However, there appears to be no “one-size-fits-all reporting measurement” for these variables because of the varied purposes, authority, and subjects of the surveys in question. Speaking personally, he said the hearing had inspired great respectfor the talent, leadership, and good work of the members of the federal statistical community. It also inspired a sense of humility because of the complexity and variability of the subject matter. Thus, the Subcommittee concluded that it is too early to offer detailed recommendations about specific standards; instead, they recommend additional efforts to explore the gaps in data collection and analysis for measuring SES on health surveys, particularly to improve understanding of health disparities. He reviewed the challenges that can be anticipated, and acknowledged the contributions of Dr. Mays, Dr. Cohen, Jacquie Lucas, and Susan Queen.

Dr. Cohen noted the increasing significance of occupation, which has emerged as a key variable in SES.

Dr. Mays expressed special appreciation for the work of the Census Bureau in this area.

Ms. Greenberg pointed out that, although it is not recommending standards, per se, the Subcommittee does provide important findings, analysis and guidance to the Secretary in its letter that will be helpful and could move things forward. Mr. Scanlon agreed, adding that the hearing was exactly what the Department had hoped for — a “state-of-the-art review of where we are and where we’re heading.” The findings will be presented to the Data Council.

After a brief discussion of the automated coding system for occupation and industry developed by CDC, Ms. Milam read aloud the recommendations. Several members suggested modifications, and there was further discussion. (See transcript and/or final letter.) Based on this discussion, a revised version of the letter will be presented for review on day two of this meeting.

Subcommittee on Quality: Steps to Improve Support for Consumers’ Decision-Making — Dr. Tang

Dr. Tang said that in February, the Subcommittee held a hearing on quality measures that matter to consumers, and found a more fundamental issue: consumers do not have access to basic information they need to choose health plans and providers or make decisions on treatment options. To address this gap, which limits patient-centeredness and consumer choice, the Subcommittee decided to seize the opportunity presented by the ACA mandate for federally supported health insurance exchanges by recommending ways for the exchanges to provide consumers with usable information. This information includes what costs consumers can anticipate and what providers are available, with descriptive and performance information on providers andthe ability to customize information to personal needs and preferences. The draft recommendationsalso stress the importance of user-centered design and testing.

After summarizing the Subcommittee’s findings and recommendations, Dr. Tang read aloud its draft recommendations.This led to a wide-ranging discussion. The topics covered included the challenges of accomplishing the goals articulated in the letter; the need to acknowledge existing efforts and resources (cf. the Center for Consumer Information and Insurance Oversight); the importance of enabling customized searches and making information easy to use; and the applications of the recommendations beyond the mechanisms in the ACA. Members also discussed possible next steps for the Subcommittee on Quality, one of which is to return to the original question of measures that matter to consumers.

Subcommittee on Privacy, Confidentiality and Security: Briefing from April 17-18 Hearing — Ms. Kloss

To extend the work of the NCVHS community health data report with respect to the needed privacy and security framework, the Subcommittee on Privacy, Confidentiality and Security held a hearing in April on “Next Steps for Community Data Use.” There were panels on four topics: Beyond Data Use Agreements (governance models), Protecting Small Groups, Using Results to Improve Community Health (featuring partnership models), and Consumer Attitudes. The participants and panelists represented a wide range of backgrounds and perspectives. The findings pointed beyond privacy to a combination of privacy and stewardship, with “the chain of trust” as a recurring theme. Several models of participatory governance were featured.

The Subcommittee is drafting a letter for action in September that sets out a framework and recommendations for stewardship of health information when used by communities to improve local health. It is interested in promulgating guidance on stewardship practices for use of health data outside the protections of the HIPAA privacy rule. Dr. Carr noted that data privacy is part of the charge of the new data working group; and there is also potential intersection with the ONC Tiger Team, so Ms. Pritts should be apprised of this project.

New Working Group on Data Access and Use — Mr. Scanlon

The new Working Group, which holds its first meeting after the present meeting, is composed of NCVHS members and consultants, following the model of the Health IT Policy Committee and Standards Committee. Mr. Scanlon gave a brief overview of the types of data holdings of HHS and its agencies. Some are descriptive, geographic, and/or programmatic rather than the type that would normally be analyzed statistically. Access to HHS data and knowledge of their existence are limited at present. The new group has been convened to bring the developer community for apps and technology together with HHS data people and data users to generate advice on “how HHS should go” and where improvements are in order. The consultants are seen as a potential bridge to developer communities, and ultimately to new groups of data users.Briefing the consultants on HHS data assets, he noted, will have to be done “in digestible portions.” In turn, they can brief HHS on new directions in social media, Web-based services, and the like. Initially, the focus will be HHS data; eventually, it might expand to other data such as on environmental health, housing, and transportation.

Dr. Carr welcomed Working Group members present at the NCVHS meeting — Leah Vaughan, Kenyon Crowley, and Bill Davenhall.(Joshua Rosenthal joined them at the NCVHS meeting on day two.) The NCVHS members on the Working Group are Drs. Carr, Cohen, Francis, Suarez, and Tang. Dr. Carr will chair the Working Group, which will hold its first meeting on June 22, after the NCVHS meeting. (See separate meeting summary.)Some of its meetings will be virtual, via teleconference and webinar.

Dr. Green expressed enthusiasm for this effort, and asked about the functional relationships between the Working Group and existing NCVHS subcommittees. Mr. Scanlon said this will emerge over time, but to some extent, the former will serve as a sounding board or “reaction group” for HHS. Any formal recommendations from the group (as distinct from informal feedback), and/or anything requiring more deliberation, will go through NCVHS. Ms. Greenberg added that there may be opportunities for collaboration between the Working Group and individual subcommittees, given the many areas of common interest. She stressed that all NCVHS members are encouraged to engage and interact with the group, as they are able.

Dr. Mays noted that NIH is very interested in using technology, and her NIH-funded Disparities Center is developing apps to help minority communities access data.

Dr. Cohen urged that state health departments and community-based organizations be included among the target audiences. This is an opportunity to push the feds to help states figure out how to improve access to data anddevelop their Web-based query systems. This, he noted, is the key to success of local public health interventions.

Approaches to the Committee’s Work — Dr. Carr

Dr. Carr observed that the Standards Subcommittee’s June 20 hearing was exceptional. In preparation for a discussion later in this meeting about administrative simplification and ACA assignments, she commented on the challenges that have arisen related to naming the authoring entity for the remaining operating rules. An NCVHS teleconference on May 4 led to a group of recommendations, through the extraordinary work of the Subcommittee onStandards. Despite efforts to reach out to key stakeholders and incorporate their input, however, an unintended consequence of using a conference call was a perception in the industry of less transparency in the process than usual. Dr. Carr offered assurances that NCVHS values collaboration and will continue to play a leadership role in fostering transparency, encouraging participation by all industry segments, and providing a level playing field for all stakeholders.

At the same time, she pointed out that the Committee — and especially the Subcommittee on Standards — has been “running a marathon like a sprint,” and “the end is not yet in sight.” This raises questions about priorities. For example, developments in the last 7 years have cast claim attachments in a much different light. She invited the Committee to consider what questions the Executive Subcommittee should address at its August 9retreat regarding what space NCVHS should be in, how it might go about its work, and what role it might play.

The discussion was preceded by a briefing by Dr. Suarez and Mr. Soonthornsima.

Standards Briefing on ACA Section 10109 — Dr. Suarez, Mr. Soonthornsima (slides)

This section of the ACA is very specific and concrete, asking about opportunities for standardization in five areas. (See slides for details.) The Subcommittee sees this as an opportunity to “step back and step up” and to look at things more holistically in terms of priorities and discern the best way to proceed over the next few years. The answer hinges on predictions about how long it will take to transform today’s health care system and traditional payment approaches into new ones. CMS is thinking about these questions in the same way.

One major theme or “megatrend” is the convergence of the administrative and clinical worlds that is already under way — for example, with respect to claim attachments, which are becoming a vehicle for clinical messages. Another trend is the need to find balance between addressing current needs for standards and new mechanisms such as insurance exchanges and health care reform and their implications for standards. Finally, there is a need to identify priorities, notably among the five domains the ACA asks NCVHS to look into.

The Subcommittee has identified two alternative strategies on which it wants input from the full Committee. One is to organize stakeholder groups such as tiger teams to address each of the topics and bring recommendations to NCVHS. The other is to tell the Secretary that NCVHS is deferring action in these areas.

Mr. Soonthornsima explained that this amounts to a reality check about what’s going on in the industry, where a lot is being asked through various mandates and initiatives. He reiterated that there is convergence among several areas, as well as a need to prioritize.

Dr. Scanlon noted that the bandwidth of NCVHS resources is another important consideration pointing to the need to prioritize. Further, it is a growing challenge to try and realize the potential of HIPAA (passed in 1996) in today’s environment, which has its own huge demands. The Subcommittee has identified these areas where it seems preferable to postpone action because the timing is not right: audits, edits, and payment rules standards. The June 20 hearing also highlighted the need to sort out problems with claims information and how to inform the bigger discussion under way, to have the greatest possible impact. Attachments, he noted, will be key to both standardization and simplification. Finally, he observed that the Subcommittee on Standards is not the only subcommittee that needs to focus on the big issues and trends; for example, Quality does, as well.

Members then discussed these issues and challenges. Dr. Nichols expressed concern about postponing addressing claims edits. Ms. Kloss noted the potential benefits of prioritizing on improving understanding of how all the pieces connect. She also stressed the importance of laying the groundwork for successful implementation of ICD-10 code sets. Dr. Carr noted that participants in the recent hearing repeatedly asked for a roadmap, suggesting the need to align incentives. Dr. Green lamented the current “broken” state of the health care delivery system, and recommended looking for the opportunities for convergence and planning for the future.

Dr. Carr asked the subcommittees to keep these themes of convergence, roadmap, and focus in mind as they develop work plans and prepare for the Executive Subcommittee retreat. Ms. Greenberg noted that CMS is interested in the idea of a stakeholder summit, suggested at the hearing, which could offer a chance to outline a roadmap and identify opportunities for convergence. Dr. Carr added that there is awareness that payers and providers need to understand each other’s worlds.

–Day Two–

Population Health SES Letter — Ms. Milam

Ms. Milam described the changes made to the letter on SES based on the previous day’s discussion, and Ms. Queen read through the new language. Following a brief discussion, the revised letter was unanimously approved.

Remarks on Data Access and Use — Todd Park, U.S. Chief Technology Officer

Dr. Carr welcomed Mr. Park. Following introductions around the table, he expressed joy and excitement at the “historic moment” marked by the impending first meeting of the new Working Group on Data Access and Use. He then briefed the group on a number of new developments in the open health data movement, including the following:

  • His successor as CTO at HHS is Bryan Sivac.
  • Healthdata.gov, which debuted in early June, has radically improved search capabilities, and has its own API that enables users to auto-extract information and HHS data owners to upload metadata and then keep it updated.
  • There is a lot of energy building at FDA about access to FDA data.
  • The West Wireless Foundation has debuted a new Health Data Innovation Fellows program to fund fellows to join HHS to help liberate data.
  • Health Datapalooza 2012 was a huge success. Highlights included an impassioned keynote speech by Senator Bill Frist; Jon Bon Jovi’s story about a project to create a resource to help homeless people locate services; and presentation by two Johns Hopkins students of their creation, Symcat. The next Palooza will probably be the last week of June, 2013.
  • The health data movement is “metastasizing in a really good way,” such as in Health Hackathons and codeathons where people get together and work on health data (e.g., in Palo Alto and at the Cajun Codeathon in Louisiana).
  • Five regional Data palooza collaboratives are starting health data initiative affiliates. All of this helps spur the cycle of ideation, problem identification, and solution building.
  • A nonprofit Health Data Consortium is taking shape, led by RWJF and IOM, to convene future Paloozas. Forum One is working with the consortium to create a strategy for the new nonprofit.

Mr. Park reviewed a quick list of trends in innovation, including much-improved search and finder tools, new types of data mash-ups, and the growth of Cloud computing. All of the above, he said, is the context for the Working Group’s work. He stated that “the default state of government data going forward, in new systems that are built, will be open and machine-readable” — a large shift from the past.
He then outlined a set of questions for the new Working Group:

  • How to bridge the gap from early ideation prototyping to true production testing or beta testing and scaling;
  • How to address the large and growing gap between the need for and the supply of health data analyst expertise, “the number one rate-limiting step” and
  • Where we need to “place our bets” in terms of health data supply improvement, considering the most compelling social business case.

One receptacle of the Working Group’s advice is the new CMS Office of Information Products and Data Analytics. In addition, Mr. Park said, the President is “personally very passionate about this.”

Discussion

Discussion with the Committee focused on innovative approaches to education in this context, learnings from other countries, and privacy and confidentiality concerns related to health information and EHRs.

Quality Subcommittee Letter — Dr. Tang

Dr. Tang reminded the group that the purpose of the letter is to supply consumers with the information they need to make informed decisions about their health. Insurance exchanges give people an unprecedented chance to look at a variety of options, and the Subcommittee wants to be sure the options are clear and the information is useful for personalized health choices. He described the revisions made to the draft letter based on the previous discussion. Following further discussion, the Committee unanimously passed a motion approving the revised letter.

NCVHS at NCHS National Data Conference — Ms. Greenberg

NCHS holds a free conference on health data every two years that typically has more than a thousand participants. This year’s meeting will be August 6-8, in Washington, DC. Ms. Greenberg reviewed some of the major topics that will be covered. One scientific session at this meeting will highlight the NCVHS report, “The Community as a Learning System for Health: Using Local Data to Improve Local Health,” which was also featured on a webinar of the National eHealth Collaborative on May 23. Ms. Greenberg asked NCVHS members and others to let Ms. Jackson know of any meetings where NCVHS reports should be distributed and/or publicized.

Standards Subcommittee Action Planning — Dr. Suarez (slides)

Dr. Suarez began with an overview of the Subcommittee’s recent actions, work plan, and next steps. Besides several focused tasks, it plans to review the broad and long-term picture and its strategy for 2013 and beyond, looking at the mega-trends that affect standards. The Subcommittee will hold a hearing on claim attachments in early 2013, and that year it will also finish evaluating and recommending operating rules for other transactions. In mid-2013, it will hold a hearing to review the status of standards implementation in general; and many other activities are planned.

In its breakout session the previous day, the Subcommittee agreed to wait to hear from CMS before deciding how to proceed on ACA Section 10109.It also discussed the priority topics on which the Subcommittee wants to focus. Claim attachments will be one major focus for the Subcommittee, as well as for the full Committee. Other topics include facets of health care reform such as insurance exchanges and ACOs, public health data standards,and the convergence of administrative and clinical worlds. CMS is engaged in similar thinking, and the Subcommittee and CMS will work together on a national strategic plan for moving standards forward. They may sponsor a listening session on the strategic plan and roadmap.

Dr. Suarez then briefed the Committee on claim attachments, a major topic for the future and one on which NCVHS held its first hearing in 1998 and submitted letters to the Secretary in 2004 and 2005. Proposed regulations, which were very detailed, were published in September 2005, but there have been no developments since then. For the first time, that regulation brought together SDOs from administrative and clinical worlds, among other advances. One important concept was the distinction between solicited and unsolicited attachment; another was the distinction between administrative information and clinical information.Now, the ACA says HHS has to publish the final regulation by January 1, 2014, with compliance two years later. Dr. Suarez presented the Subcommittee’s timeline toward that end, and explained the NCVHS role. He stressed that all NCVHS members need to keep this impending process and its implications in mind. He explained some of the key issues and principles. The Subcommittee will hold monthly calls between now and December to discuss these issues, and will meet in person in September and November.

Dr. Carr referred to the NCVHS letter sent after its February 2012 meeting, which outlines many of the issues and the findings from the November 2011 hearing. She noted the powerful juxtaposition between these longstanding challenges and the emerging “new world” articulated by Mr. Park, raising questions about how NCVHS does the work assigned to it, marries parallel processes, and adds value to what it hears from industry and others. The Committee, she stressed, has “got to be an integrator.” She invited members to discuss these questions, to help lay the groundwork for the Executive Subcommittee retreat on August 9.

Dr. Cohen described the NCVHS niche and mission as translating numbers and data into actionable decision-making tools for individuals, communities, and providers, to help them make better decisions. Dr. Nichols paraphrased Dr. Carr’s overview as “telling us to skate where the puck is going,” and several members expressed agreement with this principle. In response to a question, Dr. Suarez said NCVHS is not locked into following the 2005 regulations, and is free to make recommendations at policy, business, and/or technical levels. Dr. Nichols noted that what providers and payers need most is to reduce administrative costs by minimizing variance.

Noting that NCVHS is very good at framing visions, Mr. Scanlon suggested that doing so in this case, including identifying all the things that are converging, could be a contribution. At the same time, Ms. Kloss noted that “there is real pain day by day” related to the administrative burden and cost, and the Committee also may need to help drive some short-term fixes. Dr. Tang urged that NCVHS stay focused on getting to a new system. Dr.Carr added that the HIPAA report on administrative simplification should serve as the roadmap. Dr. Suarez concluded by saying that NCVHS will have to work on multiple timelines and multiple processes, addressing short-term needs while keeping an eye to the future and long-term goals.

Several members expressed appreciation for Dr. Suarez’s slides, and for the strategic approach to the issues on the Standards Subcommittee’s plate.

Additional Subcommittee Reports

Dr. Tang reported that the Subcommittee on Quality is considering the best way to help provide information for informed decision-making by individuals.

Ms. Jackson reported that the Subcommittee on Population Health plans to continue with two parallel projects: continued work on SES, and following up on the community health data report.

Ms. Kloss reported that the Subcommittee on Privacy, Confidentiality and Security has decided to substantially revise its letter on privacy and stewardship for community data use. It still plans to present a letter at the September meeting.

Dr. Carr then adjourned the meeting.

To the best of my knowledge, the meeting synopsis is accurate and complete.

/s/                                                                            9/21/ 2012

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Chairperson                                                                       Date