Department of Health and Human Services

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

September 16-17, 2013

National Center for Health Statistics, Hyattsville, MD

Meeting Minutes


The National Committee on Vital and Health Statistics was convened on September 16-17, 2013, at the National Center for Health Statistics in Hyattsville, MD. The meeting was open to the public.

Present:

Committee members

  • Larry A. Green, M.D., Chair
  • John J. Burke, MBA, MSPharm.
  • Raj Chanderraj, MD, FACC
  • Bruce Cohen, Ph.D.
  • Llewellyn Cornelius, Ph.D.
  • Leslie Pickering Francis, J.D., Ph.D.
  • Alexandra Goss
  • 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
  • William W. Stead, M.D.
  • Walter Suarez, M.D.
  • Paul Tang, M.D., MPH
  • James Walker, M.D, FACP (phone)

Absent:

  • Lynn A. Blewett, Ph.D.

Lead Staff and Liaisons

  • Marjorie Greenberg, NCHS, Exec. Secretary
  • James Scanlon, ASPE, Exec. Staff Director
  • Michael Fitzmaurice, AHRQ liaison
  • Bob Kaplan, NIH liaison
  • Justine M. Carr, M.D., Working Group Chair
  • Debbie Jackson, NCHS
  • Katherine Jones, NCHS
  • Maya Bernstein, J.D., ASPE
  • Kassi Webster, NCHS
  • Kamahanahokulani Farrar, CMS

Others

  • William Alfano, BCBSA
  • Denise Buenning, CMS
  • Steven Lazarus, Boundary Information Group
  • Kelley Turek, AHIP
  • Thomas Bizzaro, First Databank
  • Rachel Foerster, Rachel Foerster & Assoc.
  • Dan Rode, Dan Rode & Assoc.
  • Lynne Gilbertson, NCPDP
  • Susan Kanaan, NCVHS Writer

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

The Committee approved two letters:

  1. A letter to the Secretary conveying observations and recommendations on the current state of administrative simplification standards, code sets, and operating rules, based on a recent NCVHS  hearing; and
  2. A letter to the CMS Administrator expressing appreciation for the service of Lorraine Doo as lead staff to the Subcommittee on Standards.

Updates from the Department

  • Data Council—Mr. Scanlon

Mr. Scanlon briefed the group on the health insurance marketplace launch, monitoring plans, the HHS strategic plan, and data policy and statistical projects. He outlined the multifaceted plans to monitor the impact of the ACA and work with stakeholder communities. He noted that the Department did not drop any initiatives when it added health care reform; all the initiatives in the strategic plan continue.

  • CMS—Ms. Buenning (slides)

Ms. Buenning affirmed that “the wheels do not stop turning because of health care reform.” She began by describing the work on the EHR incentive program and Meaningful Use and gave the latest numbers on eligible providers and registered hospitals and payments to both categories. With ICD-10 code sets, CMS is on track with its internal milestones toward the October 1, 2014 implementation date. With health care reform, CMS has established several Privacy Artifacts in support of implementation of the Insurance Marketplace.

  • ONC Update—Seth Pazinski (slides)

Mr. Pazinski reported briefly on eight areas of ONC activity, starting with the third annual Consumer IT summit taking place on September 16. He discussed the Health IT Patient Safety Action and Surveillance Plan (AKA the HIT Safety Plan), which ONC developed in collaboration with CMS, AHRQ and other HHS partners.

  • ONC Privacy and Security Policy and Project Update—Laura Rosas, JD, MPH (slides)

Ms. Rosas reported that the ONC Privacy Office is planning an HITPC virtual meeting on accounting for disclosures on September 30, with NCVHS participation. She briefed the group on a new series of educational videos and a new video game to help providers understand privacy and security, something with which smaller practices in particular struggle.

  • HHS Office for Civil Rights – Rachel Seeger (slides)

Ms. Seeger began with a report on recent enforcement actions and added that OCR Director Rodriquez has pledged to stand up a permanent audit program, expected in 2014. She briefed the group on the impact and reach of OCR’s PSA campaign targeting black men who have sex with men who are HIV positive. She showed new videos, one each for consumers and providers, on the Omnibus Rule, and said OCR is working hard to make providers aware of their obligations under the Omnibus Rule.

Concluding this series of HHS briefings, Dr. Green thanked the presenters and asked them to advise NCVHS on how it can be most helpful to their endeavors and avoid duplicating the efforts of others.

Standards Letter on Findings from June 2013 Hearing – Dr. Suarez

Dr. Suarez presented a letter developed by the Subcommittee on Standards based on a June 2013 NCVHS hearing on the current state of administrative simplification standards, code sets, and operating rules. The Subcommittee would revise the letter based on the Committee’s discussion and Dr. Suarez presented the revised version on day two of this meeting. The revised letter was approved.

Community as a Learning System for Health – Dr. Cohen and Ms. Milam (slides)

Dr. Cohen reported on activities since the June 2013 Joint Roundtable on Health Data Needs for Community-Driven Change. The purpose of the Roundtable was to advance understanding of data access and use, refine the stewardship framework, and better understand the role of government in providing data and support to communities. The Subcommittee is developing plans for disseminating the Roundtable summary, which Ms. Milam described. It is also starting to think about the key messages for a letter to the Secretary on community data access and use, and it is thinking about community readiness.

The Subcommittee has begun to study what technical assistance for communities already exists and what more they need. In addition, it will provide some form of support for a forthcoming project by the Working Group on Data Access and Use. Dr. Francis added that the NCVHS community data stewardship framework would provide the context for the development of case studies on how to enable openness, transparency and choice with respect to community data use and reuse.

This presentation stimulated considerable discussion among members. (See detailed summary below.)

HIPAA Report Outline and Plans – Dr. Suarez

Dr. Suarez shared the proposed outline for the 11th report to Congress on HIPAA administrative simplification implementation.

NCHS Update – Charles Rothwell, Acting Director

Mr. Rothwell reported that the search for the new NCHS director is well on its way. The future location of the Center is not yet known. The budget situation still looks good in that NCHS will probably not lose funds. It has expanded its health care surveys considerably.

FCC Initiatives to Support the Community as a Learning System for Health – Matt Quinn (slides)

Mr. Quinn is Director of Healthcare Initiatives for the Federal Communications Commission (FCC). He said FCC is well aligned with the idea of community as a learning health system. He shared information on FCC’s role and initiatives in health care, notably the Rural Healthcare Program, the Healthcare Connect Fund, Lifeline, and mHealth. He encouraged the Committee to think about opportunities for collaboration and how FCC could be a catalyst for the digitization of health care and the movement to new models of patient-centered care and community economic development.

Accounting for Disclosures: NCVHS Involvement – Dr. Francis

“Accounting for disclosures” is a HITECH provision for telling patients, upon request, to whom their records have been disclosed. The ONC Policy Committee Tiger Team was asked to do a fact-finding hearing on what is going on in the industry and what consumers want in this area. OCR and NCVHS have been involved in planning the virtual hearing, to be held on September 30. The NCVHS Subcommittee on Privacy, Confidentiality and Security generated a list of questions that it wants addressed, and it may do its own fact-finding to augment what is gleaned from the hearing. Dr. Green asked Dr. Francis to  report back to the Executive Subcommittee about this matter, in preparation for the November meeting.

Standards: Plans for Roadmap Roundtable – Dr. Suarez (slides)

The Subcommittee on Standards will host a roundtable on a vision and goals for ehealth standardization on September 18 at NCHS. It will look at the vision for ehealth, goals of ehealth standards and standardization, and key industry trends, and lay the groundwork for development of an ehealth standards roadmap for the industry. The Subcommittee wants to identify challenges, issues, and opportunities and to anticipate any strategic shifts coming.

Committee members offered suggestions about how to think about these topics and what kind of product might be generated by the roundtable. Major points were that the health care system needs fundamental change, and NCVHS can play a role in shaping the role of information in the dramatic transformation under way and building the capacity for rapid innovation. This implies linking the roundtable findings to a preamble that envisions the future, covering where we may be going and what needs to change. Ms. Kloss suggested that the Committee take time in its November meeting to pull together and build on the learnings from the roadmap roundtable.

HHS Data Working Group Activities – Dr. Carr (slides)

Dr. Carr noted the resonance between the foregoing discussion and the work and thinking of the Working Group. She then briefed the Committee on the Working Group’s proposal to host a “solvathon” in partnership with a community (TBD) to demonstrate the innovative use of HHS data in conjunction with unconventional data (e.g., social media data) to address a specific community health issue. She stressed that the project is a work in process.

Further Subcommittee Reports

(See detailed summary.)

Final Remarks – Dr. Green and Members

Dr. Green observed that while NCVHS is evolving as a Committee and making progress on its internal convergence, it is “not quite there yet.” He predicted that the November meeting would be a “threshold event” in which the Committee would find clarity about where it is headed in all its domains. To close the meeting, he invited those around the table to comment briefly (see transcript). Dr. Stead laid out “a straw person of a framework of what a new work plan for the Committee as a whole might look like,” to facilitate the convergence of public health and health care.


DETAILED SUMMARY

-Day One-

Dr. Green welcomed everyone and said the major piece of work for the meeting would be completion and approval of a letter developed by the Subcommittee on Standards.

Updates from the Department

Data Council—Mr. Scanlon 

Mr. Scanlon briefed the group on the health insurance marketplace launch and monitoring plans, the HHS strategic plan, and data policy and statistical projects.

He began with an overview of the federally facilitated marketplace, in which 34 states are participating. Information and enrollment opportunities are available online, via call centers and mail, and at in-person sites. Information transactions are coordinated through the Federal data hub, but no information is stored there. There are plans to monitor the impact of the ACA through multiple means including new questions on the major health surveys. Regarding administrative data, the Simplified Consolidated Application, which provides a model for the states, includes section 4302 data and demographic data collection standards for race and ethnicity. This will generate information on application patterns among various vulnerable populations and on the status of Medicaid enrollment and other matters.

HHS has developed guidance for data standards for race, ethnicity, language, and disability in administrative data for grantees and others, along with guidance for assessing eligibility related to federal poverty level and health insured coverage categories.  The hope is that community health centers and other parts of the safety net will be able to have a sense of how things are developing for their populations with respect to the ACA.

HHS is also working with other stakeholder communities, notably the segment of the public health community that has provided clinical services and is worried about how health care reform will affect their funding and services. In addition, the Department is talking to representatives of vulnerable populations to optimize outreach and communication about eligibility. Data is a big issue, in view of concerns that inadequate data on vulnerable populations will mask the extent of unmet need. The hope is that new data standards will help by providing greater granularity regarding various population groups. Mr. Scanlon described the changes being made to various HHS surveys to yield more detailed information on health insurance coverage and ACA impact.

Turning to other HHS projects, he noted that the Department did not drop any initiatives when it added health care reform, and all the initiatives in the strategic plan continue. The Data Council is working with agencies to develop research in several areas, including statistical techniques to prevent identity disclosure in released HHS data, associated with the mosaic effect. In another initiative, there is excitement about the web-based National Health Interview Survey, and hope that this will improve response rates, reduce costs, and enable faster data turnaround. HHS is also working on pilot projects to explore how EHRs can help. Mr. Scanlon promised to brief the Committee as soon as the projects are wrapped up. HHS is also working on a research agenda on how public health agencies can participate more fully in Health IT and EHR initiatives, and it plans to use Patient Centered Outcome Research Initiative (PCORI) data for this purpose. HHS also is looking at public health workforce issues in terms of the ACA impact, and it is interested in strengthening linkages between the clinical and public health communities.

Discussion

NCVHS members offered questions and comments about these topics:

  • The merits of HHS mandating data collection by safety net organizations and Medicaid;
  • Request for a briefing on the essential benefit package;
  • Concern in the vital statistics community about potential data losses from transitioning to EHRs, and the need to include NAPHSIS and vital statistics people in the planning;
  • An offer by the Privacy Subcommittee to work with HHS on identity disclosure and mosaic effect issues;
  • Data collection on how many people are accessing care (as distinct from coverage);
  • The enduring need to institute a patient identifier;
  • Plans for an NCVHS hearing on public health data standards;
  • Suggestion that the policy thrust be to prevent bad behavior with respect to data disclosure rather than trying to limit all behaviors; and
  • Suggestion to look for models of good data stewardship in the research environment, to promulgate guidance in this area.

CMS—Ms. Buenning (slides)

Ms. Buenning affirmed that “the wheels do not stop turning because of health care reform.” She began by describing the work on the EHR incentive program and Meaningful Use, and gave the latest numbers on eligible providers and registered hospitals and payments to both categories.

With ICD-10 code sets, CMS is on track with its internal milestones toward the October 1, 2014 implementation date. Internal testing continues, and CMS is monitoring and working closely with States. Health plans, clearinghouses, large physician practices, and hospitals are on target for implementation; and CMS is providing additional technical assistance to small practices, using a “doctor-to-doctor” outreach.

With health care reform, CMS has established several Privacy Artifacts in support of implementation of the Insurance Marketplace: it published Privacy Act Systems of Records in the Federal Register; it established bilateral signature of privacy agreements in a number of areas including data sharing; and it established additional privacy assessment and monitoring. Both Federally facilitated and state-based marketplaces have conducted privacy impact assessments, and all marketplaces have a standardized incident response plan, with CMS as the hub. No repurposing of marketplace enrollment data will be permitted outside the system of record. A proposed rule for health plan certification is in clearance at CMS at present, to be published in November.

In the discussion period, NCVHS members had comments and questions about possible ways to enable research using data from individual system of records databases. It was suggested that NCVHS explore developing standards and guidelines around the reuse of marketplace data for various publicly beneficial secondary uses.

ONC Update – Seth Pazinski (slides)

Mr. Pazinski reported briefly on eight areas of ONC activity, starting with the third annual Consumer IT summit taking place on September 16. Its purpose is for participants to learn about and be part of advancements in enabling patients to better manage their health. ONC released a progress report on the Federal Health IT Strategic Plan (2011-15), which is posted online with links to various information sources. ONC is working with CMS on principles and strategies to accelerate health information exchange; they released a report on this earlier this year. ONC has charged its Policy Committee with providing recommendations on a voluntary certification program related to long-term care and behavioral health. It is working with ASPE on a cross-departmental effort to identify strategic opportunities for patient-centered outcomes research (PCORI). It posted a report to Congress on Health IT adoption through April 2013 on its website.

ONC developed the Health IT Patient Safety Action and Surveillance Plan (AKA the HIT Safety Plan) in collaboration with CMS, AHRQ and other HHS partners. It reflects the 2011 IOM report on health IT safety, recommendations from the ONC Policy Committee, and public comments. The major objectives are to use health IT to make care safer and to continuously improve the safety of health IT. ONC issued guidance on live surveillance of certified EHR technology on July 2, 2013. It is collaborating with The Joint Commission to do research and analysis on the sentinel event database and to provide support for early detection of and mitigation of serious events and hazards. Finally, Mr. Pazinsky reported on the latest numbers on certified EHR products, and said there is now a new market for such products.

ONC Privacy and Security Policy and Project Update—Laura Rosas, JD, MPH (slides)

Ms. Rosas reported that the ONC Privacy Office is planning an HITPC virtual meeting on accounting for disclosures on September 30, with NCVHS participation. A variety of stakeholders will be panelists in the meeting. It also is coordinating with other agencies with respect to the development of a data protection regulation by the European Union.

She also briefed the group on a new series of educational videos and a new video game to help providers understand privacy and security, something with which smaller practices in particular struggle. The topics include contingency planning and risk analysis. They were developed in collaboration with the HHS Office of Civil Rights, and will be released on healthIT.gov in October 2013.

Discussion

Dr. Tang and Mr. Pazinsky discussed ONC’s work with the Joint Commission in further detail. One goal of the joint effort is to get a sense of the relative frequency and severity of health IT-related events; other goals are to see how health IT could play a role in preventing sentinel events and to identify potential tools and lessons to share with the field. Dr. Tang stressed the importance of training so that users know how to identify reportable safety concerns, and also the need to include ambulatory as well as hospital sites. Ms. Kloss pointed to contractual guidelines and analysis made available by ONC for providers.

Dr. Stead remarked that despite the Department’s evident efforts to harmonize, “in the trenches it still feels pretty fragmented.” He cited a specific disconnect as an example and appealed for a process for working through such issues together.

HHS Office for Civil Rights – Rachel Seeger (slides)

Ms. Seeger began with a report on recent enforcement actions by OCR, against Wellpoint and against Affinity Health Plan in New York. OCR Director Rodriquez has pledged to stand up a permanent audit program, expected in 2014. And the Office recently conducted a webinar series on electronic data interchange.

She then briefed the group on the impact and reach of OCR’s PSA campaign targeting black men who have sex with men who are HIV positive. There are also transit ads, which are reaching millions in several cities, and community sessions have reached 135,000 individuals.

Provider education programs on protecting patients’ rights that are offered on Medscape.org, with CME and CE credits, have reached 40,000 so far. And OCR is launching new modules on mobile device security and on HIPAA security risk analysis and risk management. It also has two new videos, one each for consumers and providers, on the Omnibus Rule, which she showed the group. OCR is working hard to make providers aware of their obligations under the Omnibus Rule. Another OCR initiative, in collaboration with ONC, is a series of model notices of privacy practices geared to health care providers and health plans. All will be released prior to the September 23 compliance date.

Discussion

Dr. Tang stressed the need to make contract negotiators aware of “the systemic ways that privacy may be affected” and what they should and should not sign to comply with privacy and Omnibus rules. Ms. Seeger noted the challenge of making covered entities aware of the tools now available on the OCR website and the need to reach more of them. Dr. Tang suggested communicating through the professional associations.

Mr. Soonthornsima asked about the intersection between the Omnibus Rule and state and federally facilitated marketplaces.  Ms. Buenning said the latter is “new territory” for CMS and it is taking “baby steps” in its decision-making, working closely with OCR and others. Dr. Cohen noted that state and local governments that may be covered or mixed entities also need guidance on protecting their confidential data.

Ms. Milam asked if the health information organizations covered by the expanded definition of business associate in HITECH include the marketplace and insurance exchanges, and Ms. Seeger said that is the subject of ongoing conversation within the Department. Dr. Green urged the Department to answer the question soon.

Ms. Goss said Pennsylvania is trying to simplify legal frameworks in order to “get the goods and services [needed] to achieve the Triple Aim” through health information exchange, by producing standardized agreements and other resources. She suggested that guidance also address handling the different business models that are emerging.

Concluding this series of HHS briefings, Dr. Green thanked the presenters and asked them to advise NCVHS on how it can be most helpful to their endeavors and avoid duplicating the efforts of others.

Standards Letter on Findings from June 2013 Hearing – Dr. Suarez

Dr. Suarez presented a letter developed by the Subcommittee on Standards based on a June 2013 NCVHS hearing on the current state of administrative simplification standards, code sets, and operating rules. Dr. Green introduced the session by thanking the co-chairs and members of the Subcommittee on Standards for their “amazing amount of work” to prepare for this presentation.

Dr. Suarez said the Subcommittee holds a hearing every June to listen to the industry about the status of implementation. After reviewing the focus of this year’s hearing, he gave an overview of the letter, explained the reasoning behind the observations, and read the recommendations. NCVHS members and staff asked questions and offered comments and suggestions on various aspects of the letter. From the audience, Gwen Lohse and Steve Lazarus from CAQH-CORE also offered suggestions. Dr. Suarez said the Subcommittee would revise the letter based on this discussion and present the revised version on day two of this meeting.

Letter of Commendation to Lorraine Doo – Dr. Suarez

Dr. Suarez presented a draft letter from NCVHS to the CMS Administrator recognizing the strong and unwavering support of Lorraine Doo as lead staff to the Subcommittee on Standards. After he read the letter, the Committee unanimously passed a motion approving the letter.

Community as a Learning System for Health – Dr. Cohen and Ms. Milam (slides)

Dr. Cohen reported on activities since the June 2013 Joint Roundtable on Health Data Needs for Community-Driven Change. Its purpose was to advance understanding of data access and use, refine the stewardship framework, and better understand the role of government in providing data and support. The subtext was the convergences among the federal government’s desire to liberate its data, the development of communities as sophisticated data users, and NCVHS efforts to integrate its work across multiple domains.

The Subcommittee is developing plans to disseminate the Roundtable summary, which Ms. Milam described. It is also starting to think about the key messages for a letter to the Secretary on community data access and use; and it is thinking about community readiness. In this context, Dr. Cohen added that the Subcommittee has begun to study what technical assistance for communities already exists and what more they need. In addition, it will provide some manner of support for a forthcoming project by the Working Group on Data Access and Use.

Dr. Francis added that the Subcommittee on Privacy, Confidentiality and Security is finding that communities know that they need to ensure trust in data use, but don’t know how to do it. She said the Stewardship Framework would provide the context for the development of case studies on how to enable openness, transparency and choice with respect to data use and reuse. Ms. Kloss added that “we made some new friends” at the Roundtable, including privacy experts who participated in the meeting who have begun to work with NCVHS on advancing the stewardship framework.

Dr. Suarez noted with respect to convergence that the Roundtable highlighted the opportunity to advance standardization in all the data relevant to community health. Dr. Tang stressed the importance of helping communities recognize and understand the problems that can and should be solved using data. Dr. Fitzmaurice suggested providing case examples of community-level decisions that need data to address them. Dr. Nichols observed that health care reform has made many more stakeholders think about population health, moving this perspective beyond being simply the responsibility of public health professionals. Getting data to where they can drive focus across sectors is the game, he said. Dr. Tang commented on the merits of presentations that connect the dots and show people how things (community issues, data sources, etc.) are related.  There was wide agreement in the group that the perspective must include but also be broader than what is ordinarily perceived as “public health.” Ms. Greenberg added that NCVHS is well suited for this opportunity to connect the dots and “push people out of their silos.”

Members briefly discussed with Mr. Scanlon the plans to present the Roundtable findings to the Data Council. Dr. Green urged the Subcommittee to clarify what it plans to do next. He proposed that NCVHS, “the nation’s data committee,” may need to be reorganized to maximize its effectiveness across all its domains of responsibility. Dr. Tang observed that “data is a tool in the game,” and it is useless without meaning. The NCVHS role, he suggested, may be to find ways to get people to “try the taste of data and its use.”

HIPAA Report Outline and Plans – Dr. Suarez

Dr. Suarez shared the proposed outline for the 11th report to Congress on HIPAA administrative simplification implementation. It will cover the period between October 1, 2011 and September 30, 2013, and highlight high-level themes. CMS has assigned a staff person to help prepare the report.

NCHS Update – Charles Rothwell, Acting Director

Mr. Rothwell reported that the search for the new NCHS director is well on its way. The future location of the Center is not yet known, except that it will be in Prince Georges County near a Metro stop, and it will be much smaller than the present location. It is talking with the Census Bureau about access to NCHS data in a telework situation for Census staff, a decision with implications for NCHS staff, as well.

The budget situation still looks good in that NCHS will probably not lose funds. It has expanded its health care surveys considerably, enabling estimates for more than 30 states, and expanded the Health Interview Survey. NCHS is also working to streamline and focus its data surveillance systems.

FCC Initiatives to Support the Community as a Learning System for Health – Matt Quinn (slides)

Mr. Quinn is Director of Healthcare Initiatives for the Federal Communications Commission (FCC). He said FCC is well aligned with the idea of community as a learning health system. He shared information on FCC’s role and initiatives in health care, notably the Rural Healthcare Program, Lifeline, and mHealth. He encouraged the Committee to think about opportunities for collaboration and about how FCC could be a catalyst for the digitization of health care and the movement to new models of patient-centered care and community economic development, “the heart of health.”

After reviewing the history, structure, and responsibilities of the FCC as a whole, he focused on its work with respect to health and health care in four areas: rural health care, broadband, spectrum, and the National Broadband Plan (NBP, which has a chapter on health care). Mr. Quinn’s job is to focus on collaboration, coordination, and communication in that context as well as to think about the FCC’s strategy in the near and medium term with respect to health care and health IT.

The Healthcare Connect Fund is part of the rural healthcare program, which subsidizes broadband and has been underutilized. The Connect Fund focuses on the use of consortia that come together for health information exchange and other health care initiatives. Funding for new entities will start in January 2014. It does not cover administrative costs, only broadband costs.   Consortia may be majority-rural rather than entirely rural. Data on the FCC pilot sites for this project are available on GitHub.

The FCC Lifeline Program provides discounts on monthly telephone service for eligible low-income consumers. There are opportunities to align Lifeline with Medicaid and Medicare initiatives to improve health and health care. There is considerable interest in this program and its potential, for example to get beneficiaries – even those without smartphones enrolled in mobile health management services.

Finally, Mr. Quinn described the work of FCC’s mHealth Task Force, which recommended that FCC work with others to ensure that mHealth becomes a routine medical best practice within five years. The mHealth Task Force has transitioned to a consumer advisory committee. He works with the FDA Office of Engineering and Technology on allocating spectrum for specific health care uses, to protect them from interference.

Dr. Francis asked who is “worrying about data security, data stewardship, data repurposing, privacy policies,” and things of that nature. Mr. Quinn replied that FCC focuses on interference and works with other agencies including FDA on other regulatory matters. He said the broader question of who oversees the entire regulatory domain is not clear to him. Dr. Francis characterized this as “a very scary failure to intersect,” and he agreed.


 -Day Two-

Action: Standards Letter – Dr. Suarez

Dr. Suarez presented the modified letter to the Secretary, as discussed on day one, and reviewed the major changes. After discussion, the Committee passed a motion to approve the letter.

Accounting for Disclosures: NCVHS Involvement – Dr. Francis

Dr. Francis explained that “accounting for disclosures” is a HITECH provision for telling patients, upon request, to whom their records have been disclosed. The ONC Policy Committee Tiger Team was asked to do a fact-finding hearing on what is going on in the industry and what consumers want in this area. OCR and NCVHS have been involved in the planning for the virtual hearing, to be held on September 30. The NCVHS Subcommittee on Privacy, Confidentiality and Security generated a list of questions that it wants addressed, and it may do its own fact-finding to augment what is gleaned from the hearing.

Dr. Suarez commented that there is confusion in the industry about the scope of the envisioned rule and what actors and activities it would cover. Because the September hearing will not address policy factors, NCVHS may decide to hold its own hearing. Dr. Francis said the Privacy Subcommittee is especially interested in what patients are concerned about regarding accounting for disclosure. There was a long comment period after the NPRM was issued, and many comments were filed, some of which Subcommittee members recently reviewed.

Dr. Green asked Dr. Francis to report back to the Executive Subcommittee about this matter, in preparation for the November meeting, and also to convey the Committee’s gratitude for being invited to participate in planning the hearing.

Standards: Plans for Roadmap Roundtable – Dr. Suarez (slides)

The Subcommittee on Standards will host a roundtable on a vision and goals for ehealth standardization on September 18 at NCHS. The first roundtable on this topic was held a year ago, regarding new concepts of information exchange for supporting administrative processes. The forthcoming one will build on a document drafted by CMS on the ehealth strategy. It will look at the vision for ehealth, the goals of ehealth standards and standardization, and key industry trends, and lay the groundwork for development of an ehealth standards roadmap for the industry. The Office of the National Coordinator (ONC) will participate in the discussion. Dr. Suarez explained the need to address the interdependencies among everything that is coming into play with respect to compliance, deadlines, and the like with respect to various requirements, as well as the need to identify gaps and issues.

Mr. Soonthornsima added that the industry has “implementation fatigue” and wants to see the return on investment; and there are concerns about adoption, the prospects for big data, and other challenges. The Subcommittee wants to frame this in terms of the Triple Aim, the ultimate goal. The major stakeholders include providers, payers, employers, patients, and communities. He reviewed the major milestones coming in the next several years, including the ACA marketplaces, ICD-10 code sets, 6020, the health plan ID, risk adjustment, operating rules, and more. The Subcommittee wants to identify challenges, issues, and opportunities and to anticipate any strategic shifts coming.

Dr. Scanlon observed that society itself is a stakeholder, and society wants “a very, very different sort of health care system.”  The elements mentioned above have been promulgated for the existing system, but we need a new and better system. He proposed that “roadmap” is not the right word for this latter perspective; “an architect’s vision” would be more appropriate. NCVHS can play a role in shaping the role of information in this dramatic transformation and in building the capacity for rapid innovation. That, he said, is the societal stakeholder’s perspective. Asked what his perspective implies for the product of the forthcoming roundtable, he suggested linking the roundtable findings to a preamble that envisions the future, covering where we may be going and what needs to change. This would include changes in the relationships between payers and the entities delivering services, and address the information requirements to facilitate the needed changes. It would be useful to identify where we are at present and how best to design and manage the change to achieve the desired improvements.

Mr. Soonthornsima suggested coming up with a set of guiding principles, as well. Dr. Carr pointed to the theme, which arose around the 60th anniversary, of the emerging sophistication of the questions that can be asked and answered with data today. NCVHS, she asserted, can play a role in focusing on the types of questions that could be asked and the ways they could be answered that is, “what we could and should be learning” from the masses of available data.

In conclusion, Dr. Green observed that the movement to integrate mental health services into primary care is one of the major changes taking place in the environment. He asserted that “the world is dictating its own timeline” because of the demands of people who need help and the fact that communities are taking responsibility for their own health.

Dr. Suarez commented on three emerging themes in recent NCVHS discussions: convergence, data stewardship, and transformation. NCVHS has a role to play in framing the larger picture for these developments. Dr. Francis pointed to abiding concerns about the absence of standards and models for data protection in the new world that is emerging.

Ms. Kloss suggested that the Committee take time in its November meeting to pull together and build on the learnings from the roadmap roundtable, rather than expecting the findings to be clear immediately after the meeting.

HHS Data Working Group Activities – Dr. Carr (slides)

Dr. Carr noted the resonance between the foregoing discussion and the work and thinking of the Working Group. She then briefed the Committee on the Working Group’s proposal to host a “solvathon” in partnership with a community (TBD) to demonstrate the innovative use of HHS data in conjunction with “novel data” (e.g., social media data) to address a specific community health issue.  Two potential communities have expressed interest in response to an email query. The major deliverable will be HHS learning about what is possible and the challenges and processes involved. The underlying assumption is that “the old paradigm isn’t going to work” and “we need an architect for the future.” In conclusion, Dr. Carr expressed gratitude for the collective learning that she always experiences in NCVHS discussions, thanks to the richness and expertise contributed by each member. She stressed that the Working Group project is a “work in progress,” and she welcomed input from Committee members.

Ms. Greenberg commented on the Committee’s good fortune that its mission and mandate encompass both concrete work such as the work on standards and more visionary work, and both are valued by the Department.

Further Subcommittee Reports

Subcommittee on Privacy, Confidentiality and Security Dr. Francis and Ms. Kloss

Besides its work on accounting for disclosures, the Subcommittee has talked with Ms. McAndrew of OCR about other HIPAA- and HITECH-related issues in its bailiwick. OCR is seeking advice on civil monetary penalties. The Subcommittee is also interested in looking at transparency and accountability, data use agreements, and questions raised by small-area data mosaic effect and re-identification issues and risks. The Subcommittee is planning to develop a primer to expand on the stewardship framework, bringing in examples and case studies. Its first step is to create a development plan for that work product.

Subcommittee on Population Health – Ms. Milam

Ms. Milam asked members to share the community data Roundtable summary with their mailing lists and colleagues. It will be sent to all Roundtable participants. Ms. Kloss will present the major findings to the Data Council, and ask for feedback on where NCVHS should focus. Finally, Ms. Milam announced that the pressures of her job make it necessary to step down as Subcommittee co-Chair, but she will remain on NCVHS.

Dr. Cohen expressed his admiration and gratitude to Ms. Milam for her leadership. He added that a major question for the Subcommittee is how NCVHS can help provide direction to the federal government on the federal role in supporting communities as learning systems. One idea is to select a group of community actors (e.g., community health centers) and talk with them about how they access and use data, what gaps they encounter, and how HHS could help.

Subcommittee on Standards – Dr. Suarez

This is National Health IT Week, and many activities are going on. There is a new ONC resource called Resources for Meaningful Consent. In addition to hosting the roundtable, the Subcommittee is working on the next HIPAA report and planning a November hearing on public health data standards.

Final Remarks – Dr. Green and Members

Dr. Green observed that while NCVHS is evolving as a Committee and making progress on its internal convergence, it is “not quite there yet.” Currently, its structure assures that each of the domains in its mission and charge receives attention. He predicted that the November meeting would be a “threshold event” in which the Committee would find clarity about where it is headed in all its domains. He added his thanks to Ms. Milam, and praised her “stunning way of gently cutting to the chase.” To close the meeting, he invited those around the table to comment briefly (see transcript).

Dr. Stead laid out “a straw person of a framework of what a new work plan for the Committee as a whole might look like,” to facilitate the convergence of public health and health care. This convergence involves a shift from the current perception of them as two silos, to recognizing them as parts of a continuum. The chief mechanism for achieving this shift is to progressively stratify the population, matched with strategies and interventions that are appropriate to each scale. He proposed for consideration four parallel NCVHS workstreams:

  1. A cascade from population to community to family and individual;
  2. Assembling a framework of approaches to repurposing data from multiple sources;
  3. Developing a tool kit to help communities use data to guide decisions and track trends; and
  4. Standards work, including roadmap development and rethinking standards in a world of rapid transformation and innovation.

Dr. Green then adjourned the meeting.


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

/s/

Char – Date