Engaging Stakeholders in Research

The goal of the Stakeholder Engagement Core is to maximize the relevance and impact of research on deprescribing by engaging a range of stakeholders and community partners.  A guiding principle is to involve stakeholders and community partners both with the research itself and in developing culturally-centered messages to address community concerns and misconceptions about deprescribing. To enhance this goal, the network has convened a Stakeholder Engagement Council to facilite connections between investigators and stakeholders for network-supported research and through stakeholder-facing messaging.

Direct stakeholder engagement is essential to ensure stakeholder knowledge, insights and perspectives are equitably represented to enhance the relevance and use of the research.

Engagement builds:

  • Trust – boosts research to be more inclusive and trustworthy
  • Shared learning – enhances the real-life value of studies for both the researcher and the community being served
  • Knowledge among end-users – addresses misconceptions about deprescribing
  • Shared decision-making – promotes collective understanding of research results by patients and those who care/advocate for them
  • Relationships and connections – helps to develop messaging and ways to disseminate findings
  • Capacity to act – enables patients and healthcare partners to apply research findings quickly and leverage change

Stakeholders may include:

  • Patients/Consumers (with lived experience) representative of the population of interest in the particular study (important not to confuse patient subjects with patient stakeholders)
  • Patient Family/Caregivers
  • Organizations who serve and/or advocate for study population
  • Other stakeholders representing professional experience include but not limited to: clinicians, community members, healthcare purchasers, payers, industry, hospital and other health systems, policy makers, Note that engaging with USDeN alone does not constitute a stakeholder engagement component.

Note that engaging with USDeN alone does not constitute a stakeholder engagement component.

In general, including all relevant types of stakeholders is a good idea. Describing the rationale for the type(s) of stakeholder involvement you propose is important. For example, an intervention designed to improve outcomes for older adults with diabetes mellitus should consider including older adults with diabetes mellitus as stakeholders. If the intervention is conducted through a primary care clinic, the perspectives of primary care physicians, allied health professionals, and staff in the clinic may also be important.

Engagement in research is the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the entire research process—from planning the study, to conducting the study, and disseminating study results.

This can include but is not limited to:

  • patient and/or surrogate decision-maker interviews;
  • focus groups,
  • an advisory group that includes a relevant organization and/or patient representatives
  • including stakeholders as co-investigators who are equal partners in the project

These forms of engagement can be used to inform one or more aspects of the proposed research, for example research question, study or intervention design, participant recruitment strategies, interpreting findings, and/or disseminating results. Engagement does not have to be extensive for all studies, but each proposed study should have at least one form of engagement.

There are numerous ways to measure stakeholder engagement such as surveys and assessments. Existing resources and examples can be found at the PCORI engagement tool and resource repository.

For genuine involvement of Stakeholders there should be compensation for their expertise, time and contributions. PCORI’s Compensation Framework provides guidance for establishing fair compensation levels for patients, caregivers, and other stakeholders.

Patient-Centered Outcomes Research Institute (PCORI) provides many resources that expand upon questions answered above with additional tools.

Community Engagement in Network-Funded Research Projects

Network-funded pilot studies and Working Groups will each involve at least one patient representative as a consultant or member of an advisory panel, or in some cases as a full-fledged member of the research team. To support this process, the network can help investigators identify stakeholders for their projects and learn to work with them.

We provide training in community partnered research for each network-funded PI including telephone consultation with core leadership to strategize how to work with stakeholders in her or his research and to help identify and connect the project with appropriate community partners. Where appropriate, core leaders connect investigators with community partners in the L.A. CAPRA and PATIENTS programs in greater Los Angeles and/or Baltimore to provide culturally relevant expertise at long distance (by videoconference). 

[ Some description here of role of the Stakeholder Engagement Council and link to SEC page. ]

Stakeholder Engagement Council

The Stakeholder Engagement Council is comprised of stakeholders who represent patient, family, and various organizational perspectives. Members serve staggered terms to provide continuity over the 5-year study period. The goal of the council is to bring stakeholder insights to network-supported research, to maximize the relevance of this research to stakeholders, and to help disseminate network activities and findings to a range of stakeholder communities. This is achieved through group work and by having individual council members participate in specific network activities such as contributing feedback to the annual call for pilot proposals, reviewing progress of funded research proposals and providing feedback on next steps (e.g., reviewing presentations and suggesting potential collaborators), identifying potential community partners for network investigators, and  linking investigators with those partners. Individual council members participate in other activities, including helping to review pilot proposals and helping plan the annual meeting.

Community Engagement in Network-Funded Research Projects

Network-funded pilot studies and Working Groups will each involve at least one patient representative as a consultant or member of an advisory panel, or in some cases as a full-fledged member of the research team. To support this process, the network can help investigators identify stakeholders for their projects and learn to work with them.

We provide training in community partnered research for each network-funded PI including telephone consultation with core leadership to strategize how to work with stakeholders in her or his research and to help identify and connect the project with appropriate community partners. Where appropriate, core leaders connect investigators with community partners in the L.A. CAPRA and PATIENTS programs in greater Los Angeles and/or Baltimore to provide culturally relevant expertise at long distance (by videoconference). 

Read our Stakeholder Engagement FAQ.

Lay Summaries of Ongoing Research  

Geriatricians, internists, and cardiologists surveyed about deprescribing

Research Summary:   English    Spanish 

Information for patients and caregivers interested in improving their own medications:

Visit our For Patients” page for resources.

Other resources related to stakeholder engagement in research:

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