Archive for February, 2012

PCORI National Patient and Stakeholder Dialogue

February 27th, 2012

Today the Patient Centered Outcomes Research Institute held a National Patient and Stakeholder Dialogue at the National Press Club. #pcoridialogue

The purpose of this meeting was to facilitate discussion and hear public comment on the draft National Priorities and Research Agenda. http://www.pcori.org/assets/PCORI-Draft-National-Priorities-and-Research-Agenda.pdf   This continues the laudable pattern of public and patient engagement that has distinguished PCORI under Executive Director, Joe Selby, the perfect Beltway outsider (IMHO) for this non-traditional entity charged with doing things differently.  I loved that COO, Anne Beal was live tweeting from the meeting and reviewing comments in real time. @anne_beal   @acbeal

The new Director and Deputy Director for Patient Engagement, Judith Glanz and Sue Sheridan were also introduced.  http://www.pcori.org/2012/engagement-team/

The agenda included  two panels  — the first featuring representatives of patient and caregiver advocacy organizations and the second clinician and business representatives – followed by 3 ½ hours of public comment.

One early observation was that there was no patient panel.  A distinction between consumers/public, patients, and patient advocacy organizations was made several times and hopefully will be better reflected in future meetings.  While I understand the concerns with selecting patient speakers for a panel, rather than comment – how do you select a few to represent many?  How do you ensure that patients stick to the rules of engagement for the meeting and provide remarks that are appropriate and productive? – if PCORI which is specifically tasked with engaging patients at every level won’t make the effort to construct a patients’ panel how can we expect any other meeting organizer.  @trishatorrey wrote a great recent blog post borne of her frustrations with this issue.  http://trishatorrey.com/2012/02/26/who-really-is-a-patient-skewed-opinions-result-from-inside-information/

Among emerging resources to help identified qualified patient speakers is Speaker Link http://speakerlink.org/

My key takeaways from the event:

  1. PCORI should be given a great deal of credit in how proactive they are in soliciting patient input, but there is much work to be done in changing the culture of policymaking entities, physicians, researchers and other stakeholders to accept a fully participatory role for patients.
  2. PCORI Board of Governors member Dr. Harlan Krumholz @hmkyale is a passionate speaker on defining authentic patient-centeredness.  He belongs in that rare circle of physicians @tedeytan and @drdannysands  who are capable of playing that essential role of bridging the patient and physicians worlds to catalyze patient-centric change.
  3. There were a number of speakers from trade associations and established interests that criticized PCORI for moving too fast, for iterating documents in parallel, rather than in sequence, and for not specifying (at this stage) the disease states or conditions that will be researched as part of this agenda.    I find this criticism disingenuous, coming from the organizations staffed and most capable of evaluating and commenting quickly.  A cynicism from two decades in Washington leads me to think that the real issue is that there was no one point to lobby for or against in the current construct.  Individual grants from diverse researchers and research communities will bypass the traditional trade association gate.  I think that the current emphasis on mechanisms of patient engagement and high level description of five areas that cross disease states is appropriate given the work that needs to be done in establishing this field and approach to patient engagement in healthcare and healthcare research.
  4. My comments to the agenda include:
    1.  Education (see my post on Research Literacy http://www.dcpatient.us/2012/01/research-literacy-and-the-democratization-of-data/)  should be a precursor to the communication and dissemination of comparative effectiveness research
    2. As PCORI does move into more specific disease states that emphasis be given to research on decision support for patients with complex conditions, comorbidities, rare diseases, and stigma that are currently underrepresented in research and where there are huge gaps in knowledge
    3. Definition of treatment include post-intervention management and issues related to survivorship.

Comments on the agenda are open until March 15, 2012.  Make your voice heard.

I look forward to working with PCORI and the new patient engagement staff to advance the mission of patient-centric ( dare we hope for patient-driven) comparative effectiveness research.