Patient Engagement and Public Dialogue: The Society for Participatory Medicine

I am cross-posting my inaugural post as Public Policy Committee Chair for the Society of Participatory Medicine, which went up last week on the Society's blog — which I commend to all of you — e-patients.net.

I 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.

Please join in here or, better yet, over at e-patients.net.

If you are interested in joining in the Society's work, whether you are a patient (we are all patients) or a health care provider, please let us know.  Meaningful Use Stage 2 and other regulations are under development, and further input will be needed.

David Harlow
The Harlow Group LLC
Health Care Law and Consulting