About The Opening Pathways Project

This project is a collaboration between patients and traditional researchers to explore the processes around discovery, research, and innovation in health and healthcare. The project is unique because it is led by a patient as Principal Investigator. Learn more about the team here. The project was supported with grant funding by the Robert Wood Johnson Foundation and ran from September 2017-2019.

  • We created an on-call data science team to support research in the DIY community. Primarily targeted at the diabetes community, this team worked to provide data science skills and support patients in small-scale research projects with already-collected diabetes data. People were able to submit ideas and obtain help in furthering investigation of their research question, as well as identifying research questions and methods appropriate for the existing data sets available in the community. (Click here to learn more, but note this part of the project is no longer active).

  • This research project also included convening a gathering of experts from all perspectives and stakeholder roles (including nontraditional perspectives) to explore the barriers to various pathways patients can take with research and innovation. Click here to read about the “Convening”.

  • This website content is open source (read more about it here), and all tools and output created by this research project will be open source. You can take a look at the Github repository – and PR content or tools yourself – to see any content and tools relevant to this work.

  • We produced two websites as output from the Opening Pathways project. You can read more about the inspiration and design behind the sites here.

    • The patient pathways site (https://patient.openingpathways.org/) enables patients to view different types of pathways they can take in their work, read individual stories from patients who’ve taken a particular pathway, and share their own stories to be included in the site.

    • The partner toolkit site (https://partner.openingpathways.org/) is for partners working with patients to be inspired with stories and narratives from other partners’ experiences, take a readiness quiz to assess their own strengths and weaknesses for working with a prospective or current patient partner, read some resources and find new material to support them working with patient partners, and share their own narratives to be included in the site.