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- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care: A Request for Input
Past Opportunities to Provide Input
- 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
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Executive Team
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For Immediate Release
Patient-Centered Outcomes Research Institute
WASHINGTON, DC (Sept. 23, 2014) — The Patient-Centered Outcomes Research Institute (PCORI) today announced the selection of "PatientPowered.us," an open-source, mobile-friendly, online app, as the first place winner of the PCORI Matchmaking App Challenge and awarded its developer the $100,000 top prize.
Sponsored by PCORI and hosted by Health 2.0, the challenge provided an opportunity for developers to create ready-to-use web-based or smartphone-based apps that would facilitate links and spur collaborations among patients, caregivers, clinicians, and other stakeholders interested in health research, and with clinical researchers. Engaging patients and others across the healthcare community in all aspects of the research process is central to PCORI’s approach to research that helps patients and those who care for them make better-informed healthcare decisions.
The first, second, and third-place winners of the PCORI challenge were announced at the Health 2.0 2014 Conference in Santa Clara, Calif. In accepting the first-place prize, “PatientPowered.us” software developer and patient advocate Sean Ahrens presented a video demonstration of his winning app.
The second place prize of $35,000 was awarded to "WellSpringboard," a crowd-sourcing and crowd-funding online app created by a team based at the University of Michigan in Ann Arbor. The $15,000 third prize was awarded to "Partners in Research," a community-building and collaboration app developed by CareHubs Inc. of Beaverton, Ore.
“Each of the three prize-winning apps submitted to our challenge demonstrated the power to help people share advice, stories, and ideas for studies and to promote collaboration on conditions of mutual interest. We hope their developers will continue to hone their capabilities and encourage their use,” said Jean Slutsky, PA, MSPH, PCORI’s Chief Engagement and Dissemination Officer.
The judges rated “PatientPowered.us” as the most user-friendly of the submissions for its simple, easy to use interface. The tool can be used easily both online and on mobile devices. It enables users to browse by condition, hold conversations through discussion threads, and submit research questions on which they hope to find collaborators. Researchers can readily identify and contact individuals interested in a particular condition to organize a study.
“An app that is easy to use is vitally important to everyone, including patients, busy clinicians and researchers,” Slutsky said. “’PatientPowered.us’ provides a simple, user-friendly experience that we believe will encourage its use by all key stakeholders.”
Built on an open-source platform, PatientPowered.us invites other developers and users to improve and expand it and is available at no charge. “PatientPowered.us is non-commercial, open-source, and creative-commons licensed,” Ahrens said. “It is 100 percent about a mission to empower patients to collectively help cure disease.”
The app sprang from Ahrens’ previous work developing Crohnology.com, a website that enables people with Crohn’s disease to collectively share data and knowledge through tracking their health. As someone who has lived with a chronic condition since age 12, Ahrens says, “my life’s work is arming patients with the ability to contribute data from their day-to-day living to research. PatientPowered.us is the next step on this journey, and it can be used by patients and researchers of any condition.”
“WellSpringboard,” winner of PCORI’s first app challenge in 2012, combines the power of crowd-sourcing and crowd-funding to identify research questions of greatest interest and to provide financial incentives to promote research on those questions.
“Partners in Research,” is an online community engagement platform that blends social media with the ability to create detailed member profiles and collaborate in private workspaces among other features. It currently supports more than 20 online communities, according to its developers.
Seventeen challenge submissions were judged by a 13-member panel of technology experts, PCORI staff members, and members of PCORI’s multi-stakeholder advisory panels. Submissions had to demonstrate how they would promote collaboration on topic prioritization, research question development, study design, and recruitment of study participants, among other goals.
Video demonstrations of the three winning apps can be found on PCORI’s website along with more information about the challenge and additional judging criteria.
- The PCORI Matchmaking App Challenge
- High-Tech Matchmaking: PCORI Rewards Apps that Connect Patients and Researchers
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.
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