High-Tech Matchmaking: PCORI Rewards Apps that Connect Patients and Researchers
- The PCORI Strategic Plan
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Past Opportunities to Provide Input
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- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
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- Draft Methodology Report Public Comment Period (2012)
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How can patients and researchers with an interest in a particular disease find each other to partner in patient-centered clinical research? This question is central to PCORI as we fulfill our mission of engaging patients, caregivers, clinicians, and other healthcare stakeholders in research. Recent tech advances have opened opportunities to foster such connections. To speed development of apps and websites that can help bring the voice of patients and others into the research process, we launched the 2014 PCORI Matchmaking App Challenge last March. We have just announced the winners at the Health 2.0 Fall Conference in Santa Clara, California.
We initiated this challenge because we are very excited about the power of apps to provide better ways for patients and others to partner with scientists. This challenge has led to a tool that will help anyone—researcher or non-researcher—kick-start a research partnership,
In the Matchmaking App Challenge, we invited developers to submit novel and creative submissions of fully functioning, polished, ready-to-publish apps or mobile websites to facilitate partnerships for conducting patient-centered outcomes research. In true PCORI fashion, developers were required to work with patients and others in the design of their apps. This latest initiative builds on a previous challenge, completed last June, which considered concepts and prototypes of partner-linking apps. We have run the challenges in cooperation with Health 2.0, a San Francisco-based company that promotes and showcases new technologies in health care.
In response to the new challenge, we received 17 entries, which were evaluated by a panel that included patient and other stakeholder representatives from our Advisory Panels, technology experts, and PCORI staff. The entries for the Matchmaking Challenge were of high caliber, particularly the finalists, who made great efforts to consult patients and clinicians for guidance on the utility of the app. The entries were required to go beyond simply matchmaking to address aspects of research partnership including topic generation, study methods design, governance, recruitment of participants, and dissemination for the results. The apps should not be designed for any one disease community or a particular type of user. We wanted researchers, patients, and other stakeholders of all kinds to use the winning apps. The winners agreed to make their apps available to all users free of charge.
First Place ($100,000):
Sean Ahrens, the founder of Crohnology.com, entered an open source, web-based, mobile-responsive application called PatientPowered.us. It is a network that connects patients with others who care about solving their health problems. Patients, health professionals, and scientists propose research ideas, in text or video, and everyone comments on those ideas, eventually building collaborations.
“I see this website as a connection point, a hub, where people interested in patient-powered research can go to find their people.” he says. “The contest made me put the pedal to the metal and gave me a clear set of goals. It forced me to be very specific and build something quickly and effectively. I thought that winning might put me in a position to push forward with the model of open-source, open-data technology on behalf of patients.”
Ahrens already has much experience in creating online patient communities. He has Crohn’s disease, and he first built the Crohnology website, a patient-to-patient information sharing network with more than 6,000 patients with Crohn’s disease and ulcerative colitis.
“I believe strongly that we need a health data commons. Our health data should not be locked up in individual fiefdoms, but patients should be able to donate it to public research in the same way we can opt in to be organ donors,” Ahrens says. Sean is currently building open source technology (OpenPPRN.org) that enables any group to run a patient-powered research network for a condition.
The Challenge judges selected Ahrens’s PatientPowered.us for first place because it was especially user-friendly and encompasses the many aspects of partnership that PCORI promotes.
Second Place ($35,000):
WellSpringboard, an initiative at the University of Michigan led by Matt Davis, aims to make crowd-sourced ideas become crowd-funded and then matched to interested researchers. You can learn more about the app here. WellSpringboard was the first-place winner of our Challenge last year, where we sought concepts and prototypes for matchmaking.
Third Place ($15,000):
The Partners in Research app is “LinkedIn meets Facebook meets Google Docs,” according to its developers, Paula Gill and colleagues at CareHubs of Beaverton, Oregon. The app facilitates partnerships while users share their stories, research, and health-related news.
At PCORI, we frequently are asked by scientists how they can find patient partners and by patients and other stakeholders how they can get involved in the research process. Now, we are delighted to be able to refer all of them to these newly developed apps. Links to the apps will be available on the PCORI web site. We look forward to a blossoming of valuable partnerships that will speed patient-centered clinical research.
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