The 2014 PCORI Matchmaking App Challenge: Answering Important Questions
We’re very excited by the response we’ve seen so far to the PCORI Matchmaking App Challenge, in which we’re asking developers to design a fully functional app that will facilitate research partnerships among patients, researchers, and other healthcare stakeholders.
We intend for the app to be a tool that will help build a community that changes how health research is done, by promoting patient engagement and patient-centeredness—core features of our mission.
We outlined our vision for this challenge during an April 30 webinar, which drew over 160 attendees from across the healthcare and technology communities, including software and app developers, researchers, and patients.
Staff from PCORI and Health 2.0, our collaborator in this challenge, detailed the challenge’s goals, submission requirements, and judging criteria. Two other speakers, meanwhile, highlighted some of the many needs that the app might fulfill.
One of these speakers, Darius Tandon, PhD, is a Northwestern University researcher and co-chair of PCORI’s Advisory Panel on Patient Engagement, who spoke of the difficulty he faces when looking for potential research partners. The other was Sandra Sundin, a caregiver trained by the Parkinson's Disease Foundation as a research advocate. Sundin is a volunteer on many Parkinson’s disease research initiatives and a leader of one of our Pipeline to Proposal projects. She emphasized the need for an app that is easy to use and will help connect individuals in less-populated areas, like Wyoming, where she lives.
We received many questions from webinar participants during the event and via email. We provide a full list of these questions and their answers on the webinar FAQ page. We hope these will be a guide to prospective challenge applicants to address some common misconceptions and clarify the link between this challenge and PCORI’s mission. But we wanted to answer two particular questions in detail here to highlight key components of this challenge.
Partners in Research
Q: What do you mean by “partners in research?” Are patients who use this app going to be enrolling as a study subject?
A: You should not consider this app as a tool to help researchers find patients to be study subjects in clinical trials. When PCORI says we want patients and other stakeholders to be “partners in research,” we mean actual members of the research team. Patients and stakeholders who are engaged in PCORI-funded studies are involved in the design and conduct of the research, dissemination of results, and evaluation of the study.
Partnership is a cornerstone of PCORI’s mission. We strive to include maximal input from our patient and other stakeholder partners. The PCORI Patient and Family Engagement Rubric illustrates promising practices of how to meaningfully involve non-researchers in clinical effectiveness research projects. The term patient partners includes patients (those with lived experience), family members, caregivers, and the organizations that represent them. Other stakeholders, as defined by our organization, include health systems, policy makers, training institutions, clinicians, purchasers, payers, researchers, and the medical device and pharmaceutical industry. By including different viewpoints and expertise from our patient and other stakeholder partners, we broaden the scope of the research and ensure that results are applicable to those who make healthcare decisions.
One way that we currently facilitate the creation of research partnerships is with our PCOR Partner List. It is a temporary mechanism that we are using, in the absence of a matchmaking app, to connect researchers with patients and stakeholders. The list compiles the names, contact information, and areas of interest of individuals who want to partner on PCORI-funded research projects and other PCORI initiatives, including this Matchmaking App Challenge. Patients and other stakeholders interested in being on a developer team signed up on the PCOR Partner List during the month of May. App developers who pre-register for the challenge will receive a copy of this list as a resource in finding patient and other stakeholder partners for their design team.
A Broad Reach
Q: Should this app be designed for a specific disease community? Can we focus on a specific disease and show how the app will scale for other diseases?
A: The app should not be designed for one disease community or one user type in particular. We want the app to be used by researchers, patients, and other stakeholders of all kinds. For example, one user may put in his profile that he is a clinical researcher with a background in diabetes research, while another could share that she is a caregiver for a child with epilepsy. Both of these individuals should be able to use the app to find others with whom they have common interests. Ability to incorporate research, disease, or health interests is one of the many features developer teams can incorporate in their app.
PCORI-funded research covers a wide range of healthcare issues, including different diseases and treatment options. As such, we do not want to limit potential users of the app. We plan to select an app that can be used with ease by any patient, researcher, or stakeholder, no matter what their background, experience, or area of interest. The app must be designed so that users, who will identify themselves as patients, other stakeholders, or researchers, and by their areas of interest and geographical location, can easily search for specific partnerships. Any limitations that prevent accessibility and ease of use will hinder our ultimate objective of creating successful partnerships.
We hope you’ll enter
If you are interested in participating in this challenge, please keep in mind that submissions are due August 15. So far, more than 50 teams have pre-registered for the challenge. We’ll announce the winner during the Health 2.0 fall conference, September 21–24, in Santa Clara, California. Check out the Health 2.0 PCORI Matchmaking App Challenge website for more information.
Happy developing!