Posts Tagged ‘PCORI’

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.

Research Literacy and the Democratization of Data

January 17th, 2012

In last week’s post, New Year’s Resolutions for E-patients, I used the term research literacy.  Go ahead. Google it. “research literacy”  I’ll wait.

What did you find?  Nothing. Exactly. Your heard it here first folks. A new concept for a new year.

As a long-time Star Trek Fan (Original, Next Generation, Deep Space Nine, even-numbered movies) I had believed that space was the final frontier.  In patient engagement, however, I have come to believe that in fact the final frontier is research.

From Patients Like Me impromptu lithium studies to reviewing grants for the Patient Centered Outcomes Research Institute (PCORI), patients are acting on pent-up desires to engage in research as other than mere subjects.

Although there is greater acceptance by physician, health system, and academic communities that patient engagement is desirable and likely to improve outcomes on an individual and population health basis, there still exists skepticism to the point of incredulousness that patients could, let alone, should, have a role in research other than as subjects.

Patient engagement for a large segment of the healthcare system equates to compliance, or if they are being politically correct, adherence.  Engagement, to them, means participation to the degree that we are able to do what the doctor has told us to do correctly.  However, just as children do not stop growing at that adorable toddler phase, patients are maturing as well in the types of questions we ask and the roles we would assume.

One of those roles for many patients, particularly those with chronic and/or rare diseases, is the development of research questions, queries about analysis and applicability of existing data or recommendations for studies that answer questions based on their own experiences and areas of emphasis.

There are numerous instances of patients or parents/caregivers starting foundations or companies for that matter to jumpstart the discovery and development of cures or even advocacy organizations like Faster Cures which has a robust track record of innovation and collaboration, but aside from the work of a limited number of advocacy organizations confined primarily to specific disease states, (Advocate Institute), no one teaches the average patient how research is conducted or provides an opportunity to become a researcher.

A great deal of the resistance by the research community to patient engagement in this arena is the inability of most patients to “speak the language”.  Just as in Stage 1 of Meaningful Use patients were dismissed when they weren’t able to answer questions such as “Are you in favor of meta-tagging of data?”, patients without backgrounds in biostatistics, study design, and epidemiology are considered to have nothing to offer to the field.

Learning the lessons of Stage 1 Meaningful Use of Health Information Technology, which has progressed to a burgeoning consumer engagement phase and active mhealth community, I propose a two-fold solution:

(1) Patients and caregivers would be well served to gain research literacy – an understanding of the mathematical and scientific terminology and tools fostering the ability to interpret and apply medical information and the clinical study process that produces that information.  (If that sounds daunting or unreasonable, figure that if nothing else, the ability to differentiate absolute from relative risk will stand you in good stead every time you read the morning paper and see a screaming headline that states drinking coffee increases your risk of death 800%)

(2) Researchers need to develop the right questions to facilitate the translation by patients of their experience into research terms and frameworks.  Just as “Are you in favor of meta-tagging of data?” evolved into “What do you want an electronic medical record to do?”, the clinical research community would benefit (in better targeted studies, faster recruitment, better retention, and increased adoption of interventions) from meeting patients where they are.

PCORI is charged specifically with identifying and developing mechanisms for patient engagement in comparative effectiveness research.  It is potentially transformational in defining research in a manner that is “informed by the perspectives, interests and values of patients throughout the research process, from the selection of research questions to the dissemination of research results.”  It is my hope that PCORI and others begin providing patients with the training and tools to make high-quality contributions to research and motivation to physicians to set another chair at the table.