A crowdfunding platform for research topics. A searchable database of patients looking to participate in research. These are two of the ideas that garnered prize money from The Patient-Centered Outcomes Research Institute as part of its patient-researcher “matching” challenge.
PCORI awarded $125,000 to companies, advocacy groups and institutions with ideas for digital tools that would connect researchers and patients interested in patient-centered outcomes research. It’s part of PCORI’s bigger effort to advance patient-centered comparative effectiveness research by finding innovative ways to connect patients and researchers.
For the $40,000 prize in the prototype category, PCORI chose WellSpringboard, a crowdsourcing platform developed by a team at University of Michigan at Ann Arbor. A demo of the prototype site shows how users can endorse, pledge funds to, and volunteer for research topics.
The institute also gave honorable mention to a community-driven research site created by Estenda Solutions Inc. where patients, caregivers and researchers can share and rank ideas to find collaborators; a national registry of potential volunteers and researchers called ResearchMatch; and Community Research Partners, a searchable database of profiles of members interested in participating in research.
The winner in the concept category, which will collect a $10,000 prize, was ACTONNECT, a search engine and interface established by Marshfield Clinic Research Foundation, Drexel University, University of Wisconsin, Scripps Research Institute and Huazhong University of Science and Technology. Patients could search to find similar patients and read their experiences with different drug and treatment options, and researchers could use that same information to gain insight into patient’s concerns.
Social network PatientsLikeMe received an honorable mention, which comes with a $5,000 prize. Other honorable mentions include S.T.A.R. Initiative, which would engage African American women in identifying and recruiting researchers to help answer their questions and concerns about breast cancer; and Lucid Bell’s Patient-Researcher Match, which would incorporate data from the NIH’s clinical trials database and let users create topic profiles.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
A panel of 10 judges selected the challenge winners based on technical merit, patient-centeredness and attention to reaching particular populations. PCORI says its staff will further review the winners to determine whether any may qualify for additional support through its other research funding programs.
[Photo Credit: Rawich]
