Research Literacy and the Democratization of Data

January 17th, 2012 by DCPatient Leave a reply »

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.

Be Sociable, Share!


  1. Helen Green says:

    I agree with you about this. Many healthcare providers do not know enough or do enough about research. I must admit to finding statistics difficult though. Even service users/patients are showing an interest now that the Internet makes more knowledge available to them.
    I also am a big Star Trek fan but not the original series I’m afraid, too sexist for me. But Next Generation, Deep Space Nine, Voyager and all the films (I will excuse the sexism in those!).

    • DCpatient says:

      Helen, thanks for commenting. Yes, I consider the Kirk version high camp.

      Both providers and patients would benefit from research education.

  2. DCpatient says:

    PCORI has issued its National Priorities for Research & Research Agenda for comment until March 15th. I encourage all patients and patient advocates to participate.

    January 23, 2012

    Dear Donna,

    The Patient-Centered Outcomes Research Institute (PCORI) issued for public comment today our first draft National Priorities for Research and Research Agenda. The priorities and agenda provide a framework and identify the broad questions that must be addressed so that patients can make better and more personalized decisions in partnership with their clinicians across all areas of health.

    Our initial research agenda is not prescriptive about which conditions or treatments to study. It is a starting point. We hope that patients and other stakeholders will join with us in the coming months as we apply this framework to identify the specific questions that are most important for PCORI to address.

    The public comment period will remain open until 11:59 p.m. EST on March 15. PCORI encourages individuals to provide comment through its website, but will also accept input by mail. Responses received through will be displayed for public view on the website.

    PCORI is holding additional forums to obtain and incorporate public feedback on the draft National Priorities for Research and Research Agenda. These forums include focus groups, involving patients, caregivers and clinicians, as well as a national dialogue session on February 27 in Washington, D.C. The dialogue is open to the public and will be accessible through a webcast and teleconference to allow individuals to participate remotely.

    After reviewing public comments and other feedback, PCORI will publish a report that summarizes the input with an explanation of how it led to changes in the draft priorities and agenda. The PCORI Board of Governors then must adopt the priorities and agenda before we can issue primary funding announcements.

    We are looking to you to help shape our national priorities and research agenda. We look forward to your feedback as we build on the work of others. We hope to craft the most patient-centered research agenda yet devised.


    Joe V. Selby, M.D., M.P.H.
    Executive Director
    Patient-Centered Outcomes Research Institute