Opening Pathways for Patients and Other Nontraditional Actors to Contribute to Discovery Research and Innovation in Health and Health Care

Project: Research project

Project Details

Description

Opening Pathways for Patients and Other Nontraditional Actors to Contribute to Discovery Research and Innovation in Health and Health Care Learning to Not Wait: Opening new pathways for discovery, research, and innovation in health & healthcare There is an emerging trend of non-traditional actors, such as patient researchers, creating novel solutions in healthcare (like DIY artificial pancreases). Current efforts to understand these actors largely use a traditional (top-down) approach which circumvents knowledge patient researchers have about themselves and the needs and struggles of their communities. To open new pathways for collaborative design and discovery, there is a need for bottom-up research to better understand this new stakeholder group and articulate best practices. This bottom-up approach can be used to improve opportunities for more people to meaningfully contribute to future health solutions to help realize a Culture of Health. Project: Led by a patient researcher (PI: Lewis), we will work with and provide support to the OpenAPS and #WeAreNotWaiting communities (exemplar groups of this emerging actor) to solve community-identified problems and also study this community to map new pathways, processes, and skills for patient researchers. Our goal is to create a model of this new stakeholder role and training materials for other patient communities to be patient researchers to increase pathways to discovery and innovation in health and healthcare. Strategy: We will do this by: 1) creating an on-call data science team to provide support to the OpenAPS & #WeAreNotWaiting communities, to develop and test processes for supporting patient researchers; 2) conducting co-design work by bringing relevant stakeholders together to define patient-research best practices; and 3) creating materials to aid and scale patient-research efforts in other health domains. Risks: Risks include pushback from traditional stakeholders and existing culture, and limited patient research engagement. Risks will be mitigated by our patient-led principal investigator collaborating with our traditional investigative team/staff, and advisory board.
StatusFinished
Effective start/end date9/15/179/30/19

Funding

  • Robert Wood Johnson Foundation: $423,220.00

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