OurResearch: Patients and investigators asking questions together

What is OurResearch?

Through an initiative we call OurResearch, OpenNotes is exploring new ways to: a) design and test research and, b) promote participant engagement in research.

Patients hold unique insights into their own healthcare experiences, and their active involvement is essential for advancing a truly patient-centered healthcare ecosystem. Over the last 15 years, patients and care partners have contributed increasingly to the design and conduct of studies. Today, patient advocates join funding institutions in evaluating new proposals, help establish research agendas and priorities, and a few have even won funding to lead their own research.

To make such advances we need to grow a larger, more representative cohort of participants. All too often, fundamental lack of trust in research and science are major barriers to such participation. Fully transparent communication about research and active involvement in the process may well advance meaningful patient engagement in these complex challenges.

OurResearch has two goals:

1. Learn from patients what matters most to them in the research process
2. Recruit patients and care partners from diverse communities as citizen scientists in the co-design of specific research inquiries