Community-engaged research includes a co-creation process in which key partners in the community work closely with researchers to plan, design and test services and programs intended to have positive impacts on health. At present, there is no way to evaluate what this process looks like in practice. This makes it hard for researchers to know when a co-creation process has been achieved with community partners. It is also hard to understand how the services and programs developed through a co-creation process can bring about positive health outcomes for communities. Without this knowledge, it is difficult for researchers and funding agencies like PCORI to determine the success of a co-creation process.
Through this proposal, the research team will develop and test a new Co-creation in PCOR engagement measure that can be used to evaluate how researchers and community members work collaboratively and co-learn during the engagement process.
The study team will work with a diverse national group of community and research partners representing four groups:
- Patients and caregivers.
- Family advocates and community leaders.
- Healthcare providers.
The team will work with these partners to create the measurement tool by having discussions with a group of experts (16-20 members), reviewing the measure for comprehension and utility through interviews with a new group (30-40 individuals), and offering the final measure online or on paper to evaluate its validity and practical value. Study partners have contributed to community-driven research on various health-related topics and are diverse in terms of where they live and work; their age; and their racial, ethnic, and cultural backgrounds. They will be involved in all of the different activities to work side-by-side with researchers and a patient partner (research team) to develop and evaluate this new measure.
To develop the co-creation measure, the study team will work with a group of 16-20 experts to define what should go into the measure and what it should look like when finished. This work will include defining what co-creation means for the different partner groups. These experts will attend several meetings in person or virtually to hold conversations and rate the measure’s statements and survey items to make sure they are relevant and relate to a co-creation research effort.
Study team members will interview a new group of 30-40 people who will be asked whether the tool is easy to understand and use and asked for their ideas to improve the tool. After using this feedback to refine this measure, investigators will ask another new group of 250-300 people involved in research with communities to answer the questions included in the survey measure offered online or on paper. The study team will see if these questions will help them learn about the quality of the co-creation process.
Outcomes (Projected) and Anticipated Impact
Researchers anticipate the survey tool will provide a new and useful way to evaluate the quality of the co-creation process in research with patients, caregivers, family advocates, community leaders, healthcare providers and others. With this survey tool, the study team can see whether a research effort promotes diversity and inclusion and whether the co-creation process leads to better health outcomes.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.