Engaging a Diverse Group of Stakeholders to Produce Meaningful Products
American Institutes for Research
1000 Thomas Jefferson Street, NW
Submitted by Kathryn Paez, PhD
Stakeholder engagement in research leverages the expertise and experience of consumers and professionals so that products developed from the research are more likely to be responsive to the target audience’s need for information. The process of researchers consulting with individuals or organizations to seek input on decisions or plans provides these stakeholders with opportunities to influence the decision-making process. Stakeholder engagement can range from focus groups and interviews, to advisory groups and individual consultancies, to true partnerships in which stakeholders share leadership of the project.
In September 2018, researchers at the American Institutes for Research (AIR) received funding from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) to assist people with disabilities and their providers in working together to safely manage the use of opioids for chronic musculoskeletal pain. As part of the project, AIR established an advisory panel to provide input throughout the project. The panel is comprised of a diverse group of individuals who are involved with the use of opioids to manage chronic pain, including people with disabilities, primary care physicians, addiction medicine specialists, rehabilitation specialists, disability researchers, and disability advocates.
This casebook entry outlines how actively involving a diverse group of stakeholders to provide input on the implementation of research plans and products leads to outcomes that are higher in quality and more relevant to users. The case study also describes the approaches used in this specific study and the resulting lessons learned.
Stakeholder engagement as a knowledge translation strategy has wide application within rehabilitation research to address the knowledge-to-action gap in health care for people with disabilities.1 Research points to different strategies used to engage stakeholders and the benefits of stakeholder engagement in improving all aspects of the research process. Stakeholder engagement is a key component of patient-centered outcomes research to ensure that research is aligned with the needs of the target audiences through their involvement in research design selection, study outcomes, and participant recruitment.2,3Stakeholder engagement helps to increase the relevance of research questions, creates knowledge that is actionable, and accelerates the uptake of research results.
To engage stakeholders in this project, AIR established a 12-member advisory panel comprised of members from a broad range of backgrounds, including people with disabilities, primary care physicians, addiction medicine specialists, rehabilitation specialists, disability researchers, and disability advocates. The panel provides input on all phases of the project. The chair of the advisory panel is an individual with a disability who has extensive public service experience. We have engaged advisory panel members in the project using a variety of techniques, including:
- Semi-Annual Advisory Panel Meetings: The research team meets with the full advisory panel twice each year over the life of the project. One of the early meetings was face-to-face so that the group could become acquainted with one another and the project and to help focus research on the most critical needs. Other meetings have been conducted by teleconference. The research team provides panel members with updates on their progress and plans for the next six months. At least half of the meeting is set aside so that panel members can comment on what was presented and respond to questions on topics for which their perspectives are needed. A robust discussion follows as the panel discusses complex topics such as interpretation of interview findings relative to the challenges experienced by both people with disabilities and providers when opioids are used long-term. The research team identifies actionable information drawn from the discussion that influences the research approach and is incorporated into project activities.
- One-on-One Meetings: In the intervals between full meetings of the advisory panel, the research team occasionally meets with individual panel members to seek their input on topics relevant to their backgrounds or expertise. For example, in developing a screening tool to identify patients who may have opioid use disorder, the research team met with a member who is a disability researcher and who previously developed a similar instrument.
- Periodic E-Mail Communication: The research team periodically requests advisory panel members’ input via e-mail. For example, the team sends out drafts of products for the advisory panel to review and critique. Panel members’ comments have led to important revisions to product content, making the wording and information more precise and sensitive to the perspectives of users.
- Advisory Panel Surveys: The panel completed an online survey following a meeting during which topics for a consumer and provider toolkit to support shared decision-making were presented and discussed. The panel prioritized the topics that were most important to include in the toolkit and suggested high-quality resources to reference in the toolkit.
To fulfill the goals and objectives of this project, we needed information about the specific concerns and priorities of people with disabilities and of the providers who cared for them in the context of the rapidly changing opioid epidemic landscape. The health care problems addressed in this project impact a broad range of stakeholders. The research team believes that ongoing advisory panel input will continue to ensure that our work provides information and resources that meet the needs of this diverse range of stakeholders.
The advisory panel has been engaged in the planning of each project activity including development of research questions for the systematic review, creation of the interview guide and recruitment of participants for the consumer and provider interviews, identification of the screening tool, and the development of dissemination products. Panel members are currently helping the research team to refine the development and dissemination plan for a provider and consumer toolkit. Later in the project, the advisory panel will provide recommendations on the most appropriate dissemination channels.
Our goal in using this strategy is to inform the research process and product development and to ensure the project is aligned with current and future concerns and priorities of research product end users. We understand that the best means of translating the knowledge emerging from our formative research will be to engage the people who are most affected by and involved in the topic area. This will require consistent engagement with the advisory panel to plan and execute the formative research tasks and to translate the findings to produce relevant products including a toolkit on assessing OUD among people with disabilities.
Throughout the project, the research team will maintain a tracking document to log members’ participation in panel meetings and to record their input. The research team has frequently used input from the advisory panel to inform the direction of the research project, improve two issue briefs that have been released from the literature review, and refine consumer and provider interviews.
- Advisory Panel Peer Leader. Having a stakeholder with strong leadership skills chair the advisory panel helps the research team to fully engage advisory panel members in meeting discussions, communicate with members in a meaningful way, and reinforce the intent of the collaboration. The chairperson’s strong relationship-building skills reinforces cohesion with the advisory group and the research team. Choosing a chair with professional leadership experience can increase the efficiency and productivity of stakeholders during and between meetings. The chair also acts as an advisor to the research team on how to effectively engage diverse stakeholders in knowledge translation activities. The chair and the principal investigator discussed their experiences engaging stakeholders as part of the project team during a webinar presented by the Center on Knowledge Translation for Disability and Rehabilitation Research.
- Effective Communication and Follow-Up. Developing feedback templates and draft materials for the advisory panel to review can encourage and facilitate advisory panel feedback. Regular and consistent follow-up helps navigate scheduling given the commitments and needs of the panel’s diverse membership.
- Identify a Team Member to Be Liaison to the Advisory Group Members. Assigning one team member responsibility for communicating with stakeholders ensures that important information is consistently and accurately conveyed between the stakeholders and the research team, that stakeholder feedback is tracked, and that consistent follow-up is made. Stakeholders know who to contact if they have questions and concerns, reducing confusion and ensuring that their communications and concerns are acted upon quickly.
Improving Assessment of Opioid Use Disorder in People with Disabilities Related to Chronic Musculoskeletal Pain
American Institutes for Research
1000 Thomas Jefferson Street, NW
Washington, DC 20007
- Kathryn Paez, PhD firstname.lastname@example.org
1 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.
2 Concannon, T. W., Fuster, M., Saunders, T., Patel, K., Wong, J. B., Leslie, L. K., & Lau J. (2014). A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. Journal of General Internal Medicine, 29(12), 1692–1701. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4242886/
3 Forsythe, L., Heckert, A., Margolis, M. K., Schrandt, S., & Frank, L. (2018). Methods and impact of engagement in research, from theory to practice and back again: Early findings from the Patient-Centered Outcomes Research Institute. Quality of Life Research, 27(1), 17–31.
- Last Updated: