Why the ROSES study?
Patient engagement in research leads to science that is higher quality and more relevant to the communities the research is supposed to benefit. Strong engagement with patients from oppressed or marginalized groups is especially important for research that seeks to address health inequity. However, there are relationship-based challenges when forming partnerships between oppressed communities and institutional research teams that are often due to power imbalances and a narrow definition of valuable contributions.
Patients from marginalized groups often engage in research as part of a movement for social change, to seek better health for their community. Groups working together in movements for social change are made up of individuals with distinct roles based on their own unique perspective and tendencies for how they take part in these movements. These distinct “social change roles” can harmonize to create long-term, meaningful change. Investigating how a person’s social change roles influence their experience of being a patient partner and the quality of the research partnership helps fill a gap in understanding how community-research teams that seek to advance health equity can work together most effectively.
What is the goal of the ROSES study?
The ROSES study seeks to understand how accounting for social change roles influences the experience of research engagement among partners from marginalized communities. The study’s aims are to:
- Develop and implement a method (the ROSES process) of identifying social change roles present among Black/African American community members engaged in endometrial cancer research.
- Understand if the ROSES process can be applied in a different context and how it changes in that context.
- Describe how awareness of social change roles in these groups affects the effectiveness of engagement by measuring perceptions of relationship, individual and group capacity, empowerment and outcomes of the research.
What is the process of the ROSES study?
ROSES will take place in the context of the SISTER (Social Interventions for Support during Treatment for Endometrial cancer and Recurrence) study, a national randomized control trial to improve the outcomes of Black high-risk patients with endometrial cancer. The SISTER study has robust engagement with patients, caregivers and community advocates. The study team will design and conduct facilitated workshops to identify social change roles present among SISTER study stakeholders and researchers. The workshops will use two frameworks of social change roles: Moyer’s 4 Roles and the social Change Ecosystem Map. Through focus groups, researchers and workshop participants will reach agreement about the most critical social change roles needed in a successful partnership.
To understand if the ROSES process can be applied in a different context, researchers will conduct the social role identification process with the Black & African-Descent Collaborative For Prostate Cancer ACtion (BACPAC). The team will analyze focus group transcripts for themes and differences between groups and collect data about experiences with research engagement through surveys at baseline (before workshops), and 1, 6 and 12 months later. The study team will look for:
- Association of engagement experience with social change roles (baseline data).
- Impact of social change role awareness on engagement experience (one-month data).
- Trends over time in engagement experience for different social roles (1-, 6-, and 12-month data).
What does the ROSES study hope to achieve?
The ROSES study seeks to account for the unique ways those subject to oppression find their voice in patient-centered outcomes research. Study outcomes include:
- Stakeholder-defined priority roles for research partnerships.
- Profiles that describe the perception of engagement quality based on different social roles.
- Patterns of changes in perceptions over time.
This work will advance the science of engagement by accounting for social change roles to better understand how the context of health equity research influences community-research partnerships. Beyond traditional publications, researchers will create visual profiles of social change roles and videos describing results. Research teams can use resulting products to assess social roles present on their teams, expand their definitions of engagement contributions and tailor engagement activities to the social roles present on their teams. This study’s results will be useful for creating mutually beneficial experiences among communities that face barriers to partnering in research and help teams assess the balance of social change roles present in their groups to better facilitate research toward health equity.
*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.