Science Policy
day one project

Create an Office of Co-Production at the National Institutes of Health

02.07.24 | 5 min read | Text by Jeff Sheehy & Grace Wickerson

The National Institutes of Health (NIH) spent $49 billion in fiscal year 2023 on research and development, a significant annual investment in medical treatment discovery and development. Despite NIH’s research investments producing paradigm-shifting therapies, such as CAR-T cancer treatments, CRISPR-enabled gene therapy for sickle cell, and the mRNA vaccine for COVID-19, the agency and medical scientists more broadly are grappling with declining trust. This further compounds decades-long mistrust in medical research by marginalized populations, whom researchers struggle to recruit as participants in medical research. If things do not improve, a lack of representation may lead to lack of access to effective medical interventions, worsen health disparities, and cost hundreds of billions of dollars.

A new paradigm for research is needed to ensure meaningful public engagement and rebuild trust. Co-production —in which researchers, patients, and practitioners work together as collaborators — offers a framework for embedding collaboration and trust into the biomedical enterprise.

The National Institutes of Health should form an Office of Co-Production in the Office of the Director, Division of Program Coordination, Planning, and Strategic Initiatives.


In accordance with Executive Order 13985 and ongoing public access initiatives, science funding and R&D agencies have been seeking ways to embed equity, accessibility, and public participation into their processes. The NIH has been increasingly working to advance publicly engaged and led research, illustrated by trainings and workshops around patient-engaged research, funding resources for community partnerships like RADx Underserved Populations, community-led research programs like Community Partnerships to Advance Science for Society (ComPASS), and support from the new NIH director. 

To ensure that public engagement efforts are sustainable, it is critical to invest in lasting infrastructure capable of building and maintaining these ties. Indeed, in their Recommendation on Open Science, the United Nations Educational, Scientific, and Cultural Organization outlined infrastructure that must be built for scientific funding to include those beyond STEMM practitioners in research decision-making. One key approach involves explicitly supporting the co-production of research, a process by which “researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge.”

Co-production provides a framework with which the NIH can advance patient involvement in research, health equity, uptake and promotion of new technologies, diverse participation in clinical trials, scientific literacy, and public health. Doing so effectively would require new models for including and empowering patient voices in the agency’s work. 


The NIH should create an Office of Co-Production within the Office of the Director, Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI). The Center for Co-Production would institutionalize best practices for co-producing research, train NIH and NIH-funded researchers in co-production principles, build patient-engaged research infrastructure, and fund pilot projects to build the research field.

The NIH Office of Co-Production, co-led by patient advocates (PA) and NIH personnel, should be established with the following key programs:

Creating an Office of Co-Production would achieve the following goals: