Matchmaker, Matchmaker – the PCORI Challenge Initiative

December 14, 2012 by Anne Beal, MD, MPH

Anne Beal headshotAt PCORI, our mandate is to support research that will help patients and those who care for them make better-informed health and healthcare decisions. To meet this goal, we’ve made it clear that we plan to support “research done differently,” requiring, among other things, that the projects funded provide mechanisms for meaningful involvement of patients and caregivers throughout the research process.

But how might researchers who are committed to engaging in such collaborative work connect with potential patient or caregiver partners? And how might patients or caregivers interested in working with researchers, or who have research ideas they’d like to see turned into a rigorous scientific study, connect with the investigators who can help to make that a reality?

We think these questions add up to an excellent opportunity for PCORI’s first “challenge” initiative – using an “open innovation” approach to problem-solving to tap into the expertise of our patient and other stakeholder communities. The solution we are asking for is creation of a “matching system” to link patients and scientists as partners in conducting research. It could be a well-articulated conceptual model, adaptation of an existing matching protocol reimagined for the purpose outlined in this challenge, a prototype for an entirely new web-based service or app, some combination of these approaches, or something else entirely.

Two Challenge participants have a conversation

This challenge, which we’re launching in collaboration with Health 2.0, offers an opportunity for innovators to help PCORI pursue our commitment to “research done differently” by bringing the voice of patients, caregivers and other stakeholders clearly and fully to the research process. We believe this means having patients and caregivers serve as collaborators with researchers in such critical activities as formulating research questions, developing research materials, determining research protocols, and helping to review and disseminate study results.

PCORI requires this focus on engagement in our funding announcements, which leverage the broad research community’s expertise in proposing topics for study but stipulate that patients and other stakeholders be meaningful members of research teams. We believe that if the research we fund is to have impact on patient outcomes, it is essential to promote involvement by and consensus among key patients and stakeholders from the start in identifying the questions to be studied and agreeing they are important.  Patients and other stakeholders need to feel a sense of ownership of the research process, and embracing research is easier when its origins are transparent, traceable and reflective of your needs.

Two Challenge participants have a conversationWe know that what we propose in this regard is neither traditional nor simple. Although the research community has extensive experience in recruiting patients as study subjects, engaging them as meaningful “collaborators” in research is not routine. We know many researchers are interested in taking this approach but don’t necessarily know the best or most effective way to proceed. Likewise, we know many patients and caregivers are interested in working with researchers, or might have research questions they would like to see tested in a rigorous study, but are unsure of how to make the connection that will allow them to see that done. Thus, we’d like to create a matchmaking system to bring them together.

A panel of reviewers, including researchers, technologists, patients and other stakeholders, will assess the entries. The review panel will judge entries, whether conceptual models or prototypes, based on how well they address the following criteria:

  • The entry’s actual or described technical capacity to efficiently and effectively connect patients and researchers, across multiple platforms and levels of complexity.
  • Usability, scalability and sustainability across diverse populations with differing levels of access to, understanding of and experience with technology and health/healthcare information.
  • Differences in the ways that patients, caregivers and researchers understand, describe and seek answers to the problems they face or the issues they’re trying to address (e.g., different terms for similar concepts, general levels of health literacy, etc.).
  • Maximizing “patient-centeredness” – the submission’s ability to account for and effectively focus on and address patients’ needs – while also emphasizing and facilitating researchers’ need to emphasize the scientific rigor of any resulting collaboration.
  • The particular challenges of serving “hard-to-reach” audiences, including, but not limited to, ethnic and racial minorities, rural populations, the elderly, the disabled/physically challenged and those for whom English is not their native language.

Winners will receive cash prizes and their work may be considered for additional PCORI support, depending on the outcome of the review process.

We think this will be a compelling challenge that will resonate with researchers, patients, the caregiver and advocacy communities, developers and entrepreneurs, and anyone else with a creative mind and interest in improving health and health care. Whichever of these groups describes you, we hope you’ll take up this challenge. We very much look forward to seeing what you come up with.

Beal served as PCORI’s Deputy Executive Director and Chief Officer for Engagement from November 2011 – March 2014

Sue Sheridan, MBA, MIM is PCORI’s Director of Patient Engagement



9 Responses to“Matchmaker, Matchmaker – the PCORI Challenge Initiative”

  1. Nancy Lutwak, M.D.

    I am very interested in the concept of patient centered research. I am the Women’s Health Champion at VA New York Harbor Healthcare System and am advocating strongly for women Veterans who experienced military sexual trauma. I feel their voices need to be heard as to their healthcare priorities, particularly for emergency services.Many of them experienced violence before joining the military and therefore, represent low-income, minority women in our society who have been abused sexually as children or battered by their partners. My research would focus on study questions as suggested by a large group of women who experienced military sexual trauma or suffer from PTSD. The answers from a large cohort of women with similar experiences to the study questions would reliably indicate to caretakers and healthcare providers what choices should be instituted to best accomodate the needs of marginalized, low-income, minority women. Nancy Lutwak, M.D.

    Reply
  2. Perry

    Doesn’t this already exist? Please take a look at researchmatch.org – an initiative being funded by NIH – which provides a way for patients to connect with researchers in a manner similar to what you’re looking for with this challenge. Shouldn’t you just work to expand this existing effort instead of starting something new? Multiple research centers are already involved in this effort. Why should they use another portal doing the same thing.
    https://www.researchmatch.org/

    Reply
  3. Roxanne Davenport

    Having epilepsy, I took extra vitamins and minerals along with my prescribed medication. I also added three times the ammount of folic acid. I was taking Tier III and one Tier IV medication when I found out I was pregnant. (This was not planned.) The ultrasound showed a normal 16 week fetus (baby girl). I knew what to expect during the ultrasound because I am Registered Medical Sonographer. I did not stop taking my epilepsy medication or my vitamins and minerals. Now that everything was normal then and now at seven years old, I wonder if the extra vitamins and minerals helped play a role with a normal pregnancy. Will putting women on vitamins and minerals with extra folic acid for question amount of months before getting pregnant, help keep risk factors low on abnormalities while taking Tier III and Tier IV medications?

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  4. Lea Loschen

    I would like to be involved in the match maker program how do I do this?

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  5. Patty Skolnik

    I just want to be a cheerleader and tell you( ann and sue)how important the work you are doing to put the consumer/patient/adcocate’s voice in the mix is. Thank you

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  6. Susan Pelletier

    I was a consumer reviewer for last February review in Washington DC. I think it is a great idea to be thinking out of the box and making funds available for what otherwise might be left out and not get the funds needed for the above mentioned hard to reach audience. I have been a reviewer over the years for the CBCRP in community based research and know it is a much needed area.
    I hope with my experience I am asked back to work on Community Based Science and needs.
    Keep up the great work!

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  7. Regina Greer-Smith MPH FACHE

    The Chicago/ Partners Patient Engagement Cluster commends PCORI for providing opportunities for diverse and underrepresented patients & caregivers to provide important input and feedback for their participation in research.

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    • Angie Harkins

      I just wanted to comment on Perry’s comment about Research Match. RM is actually very different – it’s a place for people to volunteer to be study participants, not partners in the conceptualization, design and implementation of research. It’s fine for what it is, but it does not address this challenge.

      Reply
  8. DonateData.net

    we have been working on building a platform for patients to be able to “donate” their medical records for research. As more patients get access to downloadable medical files through patient portals in the form of blue button files, CCR/CCD files, they will be in a position to use this file for whatever they like. We believe that DonateData.net will provide them a tremendous opportunity to donate their data to research studies. The site serves as a platform for researchers to list their studies and for patients to view them and donate their data if they like. Americans routinely donate to research foundations or help raise funds, so they will likely to be able to share their medical information for furthering research (the site gives them ability to submit only the part of the record they want to share, not everything)

    Plus DonateData provides researchers a way to engage data donors through a message broadcast system. A demo is provided for the PCORI challenge here – https://vimeo.com/64119897

    Reply

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