Consumer Workshops and Stakeholder Engagement at the Intersection of Opioid Use Disorder and Disability

Brandeis University, Heller School for Social Policy and Management
INROADS: Intersecting Research on Opioid Misuse, Addiction, and Disability Services
Submitted by Sharon Reif, PhD, Principal Investigator

Focus

The INROADS project—Intersecting Research on Opioid Misuse, Addiction, and Disability—began its work by reviewing the existing research about opioid use disorders (OUDs) and OUD treatment among people with disabilities, with data analyses underway to better understand this intersection. As a result, the project is generating new findings that could benefit people with disabilities, especially those dealing with or at risk of OUDs.

Facilitated workshops with groups of consumers—people with disabilities—will ensure that knowledge developed during the INROADS project is effectively disseminated among people with disabilities and other audiences that they select. Workshop participants will identify topics that stem from the INROADS findings, choose knowledge translation methods and formats appropriate for the audience and topic, and create products that will be shared widely. In addition, stakeholders—people with disabilities, peer providers, advocates, service providers, and policy makers—contribute essential input and guidance across the project activities via an advisory board and peer support workgroup.

Context

We know strikingly little about OUD among people with disabilities, although people with disabilities are at higher risk of OUD for a variety of reasons. The lack of data undermines our ability to deal with the opioid crisis in the disability community. Multipronged efforts by a range of stakeholders are required to reduce the incidence of OUD, ensure access to effective treatment, and promote and support healthy communities nationwide. INROADS is designed to expand our knowledge base regarding the intersection of people with disabilities and OUD.

INROADS takes a multipronged approach to achieve its objectives. This approach includes literature reviews, analysis of national and state datasets, focus groups and interviews with people living with disabilities, identification of peer support models for people with disabilities and OUD, and policy analysis. Findings are disseminated through issue briefs, a website, academic journals and conferences, provider meetings and webinars, and social media. The INROADS team engages with stakeholders and people with disabilities to refine research questions, evaluate and vet findings, identify important themes, and generate informed knowledge transfer products. We use several approaches to achieve consumer and stakeholder engagement, including consumer workshops, a peer support workgroup, and an advisory board.

KT Activity

A key element of the INROADS project is engaging with the disability community through consumer workshops and stakeholder engagement, which in turn informs ongoing research and dissemination. These approaches involve two-way KT processes wherein:

  • Stakeholders—including consumers, peer support providers, advocates, service providers, and policy makers—guide and collaborate with the INROADS research team as we design and conduct all research activities including KT and dissemination.
  • Consumers engaged in the workshops determine how and where the findings they choose to highlight should be disseminated to the disability community to achieve the maximum impact.

KT From Stakeholders Also Guides Our Research
We engage an advisory board for the overall project and a workgroup that addresses specific questions around peer support. Stakeholders in the advisory board and workgroup contribute essential input as we collaborate to refine research questions, populations, and subgroups for analyses. Stakeholders review preliminary findings and, in conjunction with the research team, collectively determine how and to whom resulting products will be defined and disseminated. The advisory board was built to capture a variety of perspectives in roles (e.g., advocate, service provider), types of disabilities (e.g., brain injury, autism), and reach (e.g., local, state, national). The peer support workgroup is comprised of people who serve as peers—in formal and informal roles—across a range of disabilities and substance use disorders. These stakeholders bring expertise to ensure that the INROADS project captures questions that matter to people with lived experience. They interpret findings and make policy recommendations in ways that have face validity in addition to a rigorous evidence base. They also may disseminate our findings through their own networks in a variety of ways.

Disability Community Drives Knowledge Transfer From Research
For more direct consumer involvement, we will facilitate workshops with groups of people with disabilities to vet research findings, identify important themes, and generate products for audiences that the consumers define. Workshop participants will be recruited via organizations such as Centers for Independent Living to facilitate our ability to engage with relevant populations (e.g., by providing space for workshop groups to meet). Research team members will prepare findings that the workgroup will review, select topics, and translate those topics into products. Workshop group members will specify a target audience, determine the most effective approach to address it, and generate appropriate content. Products may include, for example, blog or social media posts, posters and brochures, or videoclips. Research team members will serve as facilitators for the workgroup and will support the production of products. Workshop groups will meet approximately twice monthly for several months as they identify, prepare, and review products that stem from the INROADS research findings.

State agency colleagues have used this strategy successfully in a state-wide learning collaborative and in the course of practice change initiatives, as has the research team in past projects, including the Parenting Options Project funded by the National Institute on Disability, Independent Living, and Rehabilitation Research. Participant organizations for workshops will be selected to capture the attention of diverse individuals across a range of characteristics including gender, race/ethnicity, disability, and geography. A small stipend will be provided to the organizations and individuals who participate in the workshops.

Impact

INROADS is still in the early stages of KT activities and developing research findings. We plan to measure the impact of KT activities by the number and types of products that are prepared and disseminated, the types of audiences—clinicians, policymakers, and people with lived experience—that are addressed, and (when tracking is possible) the number of people who access INROADS products. Despite our intentional approach to involving stakeholders and consumers in the project, the implementation of these strategies in terms of knowledge transfer requires fairly intensive guidance from the project team. Further, and despite a well-defined plan, the project’s KT activities are often in flux as collaborations are developed and input from stakeholders and consumers is considered. This is a challenge; but it suggests that we are “walking the talk” in terms of incorporating input from the people for whom our work matters most.

Contact Information

INROADS: Intersecting Research on Opioid Misuse, Addiction, and Disability Services
Brandeis University, Heller School for Social Policy and Management
415 South Street
Waltham, MA 02453-2728
781-736-3924
https://heller.brandeis.edu/ibh/research/inroads/index.html

Key contact:

References