Selected concept, prototype offer ways to connect patients and researchers as study partners
Washington, D.C. (June 3, 2013) – The Patient-Centered Outcomes Research Institute (PCORI) today announced the winners of the PCORI Challenge, a competition to find innovative ways to connect patients and researchers as partners in efforts to advance patient-centered comparative effectiveness research (CER).
PCORI sponsored the challenge as an opportunity for innovators to help advance the goal of ensuring that patients, caregivers, clinicians, and others from across the healthcare community are actively engaged in all aspects of the clinical research process, from generating ideas to sharing study results.
The PCORI Challenge awarded prizes for both concepts and more fully developed prototypes of "matching" tools or systems that could effectively help patients and researchers interested in collaborating on CER find one another and work together. The winners were announced at the fourth annual Health Datapalooza, the national conference on innovative and effective uses of health data. PCORI also named three honorable mentions in each category.
The winner in the prototype category and recipient of a $40,000 prize is WellSpringboard, a web-based crowd-sourcing platform. Its developers say WellSpringboard will let users propose, endorse, and pledge funds for research questions and topics and researchers to apply for funding to conduct studies on the topics that have met their fundraising goals. WellSpringboard was developed by a team based at the University of Michigan at Ann Arbor.
ACTONNECT, a web-based search engine and interface, took first place and a $10,000 prize for the best concept of a matching system. ACTONNECT aims to enable patients, clinicians, researchers, and others to conduct searches of health information gleaned from dozens of patient forums and sites and to share their results graphically. It is being developed by a team from five institutions: Marshfield Clinic Research Foundation, Marshfield, Wis.; Drexel University, Philadelphia; University of Wisconsin, Madison; Scripps Research Institute, La Jolla, Calif.; and Huazhong University of Science and Technology, Wuhan, China.
“We’re very pleased to recognize the PCORI Challenge winners and the potential they have demonstrated for new ways to link researchers and patients as partners in research,” said Anne Beal, MD, MPH, PCORI’s Deputy Executive Director and Chief Officer for Engagement. “Patients, caregivers, clinicians, and other stakeholders must be actively involved in the development and conduct of health research to fill the knowledge gaps that hinder health decision making.”
Honorable mentions in the prototype category were awarded $20,000 each:
- Estenda’s Community-Driven Research, an online community that allows patients, caregivers, and researchers to share and rank topics and ideas and to find interested collaborators.
- ResearchMatch, a national online registry of potential study volunteers and researchers, which aims to create new services, including tools designed to spur dialogue among users.
- Community Research Partners, an online network where users can create profiles that researchers and members can tap to share interests and explore opportunities to collaborate.
Honorable mentions for concepts each received $5,000:
- PatientsLikeMe, an online network where people share information and get support and where researchers can glean insights into patients’ experiences from the information users share and the site’s tools.
- S. T. A. R. INITIATIVE, an initiative consisting of a mobile app would let African-American women connect with researchers and educational curricula for both these women and researchers.
- Lucid Bell’s Patient-Researcher Match, a web-based application that would incorporate data from the National Institute of Health’s clinical trials database and enable users to create topic proﬁles for themselves or others.
More details on and demonstrations of the winners and honorable mentions are available at the PCORI Challenge page maintained by PCORI’s challenge manager Health 2.0, a company that promotes and showcases new technologies in health care through conferences, code-a-thons, competitions and more.
A multi-stakeholder panel of 10 judges selected the challenge winners from 29 entries submitted by academic centers, patient advocacy and community organizations, industry groups and others. PCORI staff also reviewed the entries. Submissions were assessed on a range of criteria, including technical merit, patient-centeredness, and attention to reaching particular populations.
PCORI’s science and engagement staff will further review the winners and honorable mentions to determine whether any might be considered as candidates for additional support through the institute’s current or planned research funding programs.
“The PCORI Challenge has shown the innovative ways that technology could be harnessed to facilitate and encourage connections and real collaboration among patients and stakeholders,” Beal said. “We hope that the recognition this competition provided will encourage these teams to continue to develop their technologies into fully functioning patient-research matching systems. We’ll follow their progress with great interest. “
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.