SPM Public Policy Committee Joins the Patient Engagement Dialogue with the Federales

In December the Society for Participatory Medicine’s executive committee appointed health law attorney David Harlow to represent the Society in public policy matters. Regular readers of HealthBlawg::David Harlow’s Health Care Law Blog know what a patient-centered, participatory thinker David is. This is his first report.

David HarlowI am delighted to offer my first report as Public Policy Committee Chair for the Society of Participatory Medicine.  I encourage all of you who are not yet Society members to join, and I encourage new and old members to consider volunteering to help with the wide range of public policy issues facing us today.

Over the past couple of months, the Public Policy Committee has gotten its sea legs; we are beginning to add the Society’s voice to the national discourse on patient engagement in a formal manner.  As planning for health reform and related initiatives becomes more concrete, it is clear that patient engagement and patient-centeredness are key issues to be considered.  For example, it was encouraging to hear Centers for Medicare and Medicaid Services (CMS) Administrator Don Berwick speak about the “Triple Aim” at the Accountable Care Organization (ACO) workshop this fall, and explicitly link the achievement of the triple aim – better care for individuals, better health for populations, and reduced per-capita costs – to patient engagement and empowerment.

There will be many opportunities for the Society to engage with policymakers, payors and provider organizations as this work continues.  CMS and its many related organizations, as well as many provider and private sector payor organizations recognize that without maintaining a focus on the patient at the core, health reform and related health IT initiatives cannot be successful.  We’ve kicked things off on two fronts – ACOs and Stage 2 Meaningful Use rules.

First, following up on the ACO workshop, CMS issued a request for guidance as it prepares draft regulations to implement the ACO shared savings initiative.  The National Committee for Quality Assurance (NCQA) is developing its own standards for ACO certification, and called for public comment at about the same time.  The Society’s leadership has developed working definitions of patient-centeredness and patient engagement, and these formed the basis of comments that we filed on the proposed CMS and NCQA standards.  The draft CMS definition of ACOs should be released in early 2011, and we look forward to seeing the Society’s perspective incorporated into the regulatory framework.  A copy of our comments, as submitted to CMS (we provided similar input to NCQA as well) is available for your review.

In this letter, we focused on patient engagement and patient-centeredness – two elements that CMS is required to consider in defining ACOs, but which are themselves not defined in the law.  With respect to patient engagement, the Society calls for a requirement that ACOs involve patients in the work of practice improvement efforts, and a mandate for creation of a patient advisory council with meaningful access to ACO leadership.  Our comments regarding patient-centeredness call for providers and ACOs to (a) collaborate with patients to achieve the patients’ goals and make sure that care is delivered in a manner that suits the patient, not just the provider; (b) share health data with patients while keeping it otherwise private; (c) allow for patients to participate fully in care decisions, without requiring that they do so; (d) provide additional resources to patients so that they may participate effectively in their own care; and (e) train all patient-facing staff on principles of patient-centeredness.  It is our view that all of these standards (as articulated more fully in the comment letter) should be evaluated and revisited on an annual basis.

Second, the HIT Policy Workgroup at the Department of Health and Human Services (HHS) pulled together the work of its “tiger teams” and issued a request for comments on its blog.  In it, the Workgroup asked for recommended measures that may be used to evaluate whether eligible providers are achieving “Stage 2” meaningful use of electronic health records, as defined through a series of “measure concepts.”  These measure concepts span a variety of domains: Patient and Family Engagement (the Society’s principal domain); Clinical Appropriateness; Care Coordination; Patient Safety; and Population and Public Health.  (More detail on the measure concepts is accessible through the link to the HHS blog linked to above.  For further background, here’s a post on the final “Stage 1” meaningful use regulation from my “home” blog, HealthBlawg.)

We submitted comments highlighting some relevant measures.  See, for example, the questionnaire developed by Judith Hibbard et al. to measure “patient activation” and published in Health Services Research, and the HCAHPS surveys – including a patient-centered medical home HCAHPS survey tool now under development.  Hibbard traces the relationship found in the literature between patient activation (what we call being an e-patient) and both improved clinical outcomes and reduced medical costs.  The 22 research-validated measures in her survey instrument break down into categories entitled: Believes Active Role Important; Confidence and Knowledge to Take Action; Taking Action; and Staying the Course under Stress.  Providers making meaningful use of electronic health record technologies, including patient portals, are likely to have a higher proportion of patients with high scores on this survey, and on the HCAHPS survey.  We also suggested revising one of the measure concepts, highlighting the need for care plans to be shared with patients’ family members or other caregivers (and not just patients).  We would like to submit a more robust set of comments on the measures to be used in evaluating eligible providers’ compliance with Stage 2 meaningful use standards as they apply to patient engagement.

Society members interested in contributing to this effort and to the work of the Public Policy Committee in general should contact me.  There is much to be done, as evidenced both by the multitude of rules to be written by the government and by the robust discussions under way regarding policy priorities on the Society’s members-only listserv.  There – I get to end with another plug for membership.

I believe that we are poised at a unique moment in history where health care regulators, providers, analysts, consultants, vendors, payors and other hangers-on are all more aware than ever of the need to involve patients – not only in their own care, but in the design of the health care system (and its myriad subsystems) so that it works best for patients.  This may seem obvious to regular readers of this blog … but it has not been obvious to much of the medical-industrial complex.  That is surely changing.

I look forward to continuing the conversation.

David Harlow, Principal of The Harlow Group LLC, is a health care attorney and consultant based in Boston, MA.  He chairs the Society of Participatory Medicine’s Public Policy Committee.  Read his award-winning blog, HealthBlawg . . . and you should follow him on Twitter.


Posted in: general | policy issues




7 Responses to “SPM Public Policy Committee Joins the Patient Engagement Dialogue with the Federales”

  1. No comments?? Boy, I for one am thrilled to have @HealthBlawg on the case (so to speak). From what I’ve seen, Washington is accustomed to fairly weighty comments, and having one of us taking care of things is great. Thanks, David!

    Thanks for reporting, too.

  2. Adrian Gropper MD says:

    Indeed, Stage 2 comments could be very important. A convenient set of slides describing the changes from Stage 1 is at:


    Slides 10-15 are mostly about patient engagement and interoperability. Unfortunately, only the top item on slide 15 talks about _bidirectional_ information exchange. It would seem that patients will have access to all of the documents on slide 10-14 and we can expect them to bring this to their appointments but our Stage 1 or 2 EHRs will not have a convenient way to read, triage, store and index this information.

    I think Stage 2 should require _bidirectional_ messaging using the NHIN Direct Project protocols that are now entering pilot testing. This would give every provider an electronic inbox in their EHR so that referrals, patients (or the front office) can have a consistent place to put documents attached to messages.

    Participation in an ACO will reward care coordination across a much wider network of providers. This network should not be strictly locked in to a particular EHR or delayed pending adequate regional Health Information Exchanges which typically lack patient portals and are not regulated as strictly as EHR (an issue addressed quite directly by the PCAST report). Directed exchange (secure email) between providers (and even with patients) is pretty-much free, standardized by ONC and available today in a form that can meet the requirements of Stage 2 for human readable data.

    Here’s my blog posting about adding Direct Project to patient portals:


  3. David Harlow says:

    @Dave – Thanks for the warm welcome. For some reason, blogging lawyers seem to spook commenters … I won’t bite.

    @Adrian – Thanks for your note re: the need for bi-directional communication, and the links. Our next target is pulling together comments on the PCAST report.

    Link to report: http://j.mp/ibhOqM
    Link to call for comments: http://j.mp/gtogow

    I look forward to hearing from anyone interested in joining in on the work of the Society’s Public Policy Committee, whether on this issue or others. In addition to this sort of reactive work, there is a need for work on proactive thinking, which has sparked some discussion over on the listserv.

  4. Thank you, David!

    That was very refreshing and impressive! A real change here, the first in a long time. So I agree with Dave being surprised at the lack of comments. The SPM is lucky to have you on board.

    I would have loved to see a mention of the need to pay particular attention to cultural and minorities issues in the comments made on behalf of the SPM. I think the SPM has a unique opportunity to advocate for the contant recognition of these very important differences, as it pushed for real patient-centric medicine and care. The remarkable lack of minority representation at ALL the conferences where the role of e-patients is highlighted is very troublesome. Please help the SPM be different!

  5. Sue Woods MD says:


    This is excellent! Patient oriented design is so critical but not necessarily understood or encouraged. Patient engagement is a process, a means to an end. The framework must go beyond patient-centeredness, which still tends to be couched through health professional eyes.

    Further stages of meaningful use may get drift upon “what’s the data” waves. The Society must push a broader vision for deployment of patient PARTICIPATORY DESIGN.

    I’m ready to help in any way.


  6. […] Please join in here or, better yet, over at e-patients.net. […]

  7. […] Please join in here or, better yet, over at e-patients.net. […]

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