Stakeholder Engagement in Research

Jonathan Delman, Behavioral Health Research Solutions

Stakeholder engagement (SE) in research is the process of researchers and stakeholders working together to answer mutually chosen research questions. Stakeholders, individuals who have an interest in the research topic, goals, includes community members, clients, clinicians, funders, advocacy organizations, trade organizations, and regulators.

SE recognizes that both parties bring unique experience and knowledge to the table. Community stakeholders understand the most critical needs of vulnerable populations and effective methods for meeting those needs. Academic researchers bring technical skill, theoretical knowledge, and resources needed to conduct effective research.

The PCORI “Engagement Rubric” identifies three stages of research: planning, conduct, and the dissemination of findings. A key foundation of SE is equitable partnerships, as well as stakeholders having the opportunity to be engaged across the three strages of research listed above.

Level and types of involvement

There are four levels of engagement/participation: consultation, involvement, partnership and empowered engagement. Most SE projects support engagement at the level of consultation or involvement. Consultation is stakeholders’ identifying for researchers community needs, values and service preferences, but without a consistent connection to the research project. With involvement, researchers work directly with an ongoing stakeholder group to obtain feedback on various aspects of the research process including recruitment strategies, tool development, and analysis and decisions overall. Stakeholder advisory boards are often used for this approach.     

Partnership involves shared planning and decision-making based on mutually agreed upon ground rules and established communication networks. This is often run through a researcher/stakeholder steering committee that meets regularly. Empowered engagement is when final decisions are made by stakeholders with researchers’ technical support (with delegation to researchers as needed). While SE imagines these clearly, there are few research teams that start or finish as partnerships or empowered engagement.

Stakeholder engagement is a complex process in which the parties may have different aims and interests, with some related tension. For example, it is likely that researchers will be more focused on disseminating findings through peer reviewed journals (one way in which they are judged professionally), while stakeholders will be more focused on dissemination in more digestible formats {e.g., research/issue briefs). In addition, parties will discover that doing SE well is time consuming, and the parties will often feel pulled away from other projects. Also, mutual trust can be hard to come by when patients and family members think that researchers are engaging in SE only to meet grant requirements, and researchers wonder if stakeholders have the skills and temperament to conduct research. And communications can be difficult because respective parties use language unfamiliar to the other, and if not explained this further distances them.

There are ways to address these tensions; here, I will only address the most basic and essential approaches. First, researchers must really see the value of stakeholder engagement, not just as a grant requirement. Second, stakeholders should be trained on the basics of research for this project, and researchers should be trained on stakeholder engagement. Third, parties should be prepared to deal with the inherent tensions between inclusion and productivity while sharing ongoing, respectful dialogue with other team members. Fourth, stakeholders should be involved in developing the research question; if not you lose an opportunity to conduct the most relevant research to the community and stakeholders may be resentful and/or not interested in the project. A best practice here is before any research projects start, researchers and stakeholders collaborate to conduct a needs assessment of the relevant population and/or geographic area.  

Benefits

The broad aims of SE are to facilitate stakeholder impact on research findings and recommendations and to improve the quality of the research. However, very few studies have assessed SE effectiveness from a partnership or empowerment perspective, though limited data show some positive results. That is, stakeholder participation can lead to research more relevant to community members/stakeholders, data instruments more understandable to subjects, more effective data collection, and data analyses more informed by community context.

In my view, one effective way of understanding SE’s potential impact on the research is to understand the project’s support infrastructure bi-dimensionally: 1) level of engagement achieved, and 2) effectiveness of SE supports in place. The below chart is basic at best, but the aim is to demonstrate how the presence of these dimensional factors improve chances of greater impact on research findings and quality. The engagement supports listed are not a complete package, but are some of the necessary ones. Intensity of support goes from ineffective support to effectively implemented supports, such as all researchers on the team understanding the value of SE versus only one researcher understanding that.

[When looking at supports, place 0-3 “X”s under the noted level of participation.  There are better SE outcomes with a higher level of engagement and the greater the number of "X"s in the table, then multiply them by enumerated level of engagement.]

The point here is there are potentially great benefits from SE. And I have seen them up close and personal. But they don’t come easy, and project developers must integrate into a proposal the supports and level of engagement needed for SE success. This rubric also prepares advisory and steering committee members to assess quality of SE and make recommendations.

References

Arthur, M., Saha, R., & Kapilashrami, A. (2023). Community participation and stakeholder engagement in determining health service coverage: A systematic review and framework synthesis to assess effectiveness. Journal of Global Health, 13.

Beal, Anne, and S. Sheridan. "Understanding the patient and family engagement rubric." Patient Centered Outcomes Research Institute (2014).

Camden, C., Shikako-Thomas, K., Nguyen, T., Graham, E., Thomas, A., Sprung, J., ... & Russell, D. J. (2015). Engaging stakeholders in rehabilitation research: a scoping review of strategies used in partnerships and evaluation of impacts. Disability and rehabilitation, 37(15), 1390-1400.

Delman, J., Arntz, D., Whitman, A., Skiest, H., Kritikos, K., Alves, P., ... & Cather, C. (2023). Using Community-Based Participatory Research to Conduct a Collaborative Needs Assessment of Mental Health Service Users: Identifying Research Questions and Building Academic-Community Trust. Health Promotion Practice, 15248399231171144.

Delman, J., Progovac, A. M., Flomenhoft, T., Delman, D., Chambers, V., & Cook, B. L. (2019). Barriers and facilitators to community-based participatory mental health care research for racial and ethnic minorities. Health Affairs, 38(3), 391-398.

Maurer, M., Mangrum, R., Hilliard-Boone, T., Amolegbe, A., Carman, K. L., Forsythe, L., ... & Woodward, K. (2022). Understanding the influence and impact of stakeholder engagement in patient-centered outcomes research: a qualitative study. Journal of General Internal Medicine, 37(Suppl 1), 6-13.