STAKEHOLDER ENGAGEMENT NAVIGATOR

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Who are stakeholders in research?

A stakeholder in research is defined as:

“...an individual or group who is responsible for or affected by health- and healthcare-related decisions that can be informed by research evidence.”

A New Taxonomy for Stakeholder Engagement in Patient-Centered Outcomes Research

Other definitions of stakeholders (broadly considered beyond research):

“Stakeholders are those who may be affected by or have an effect on an effort. They may also include people who have a strong interest in the effort for academic, philosophical, or political reasons, even though they and their families, friends, and associates are not directly affected by it.”

Community Tool Box

What types of stakeholders may be engaged in research?

Frameworks describing different types of stakeholders in research - and their potential perspectives and interests in the research - include:

  1. The 7Ps framework: “The 7Ps framework identifies key groups to consider for engagement. The first, patients and the public, represents the current and potential consumers of patient-centered health care and population-focused public health. The second is providers, including individuals and organizations that provide care to patients and populations. Purchasers, the individuals and entities responsible for underwriting the costs of health care, such as employers, make up the third group. The fourth group consists of payers who are responsible for reimbursement of medical care, such as insurers. The fifth is composed of public policy makers and policy advocates working in the non-governmental sector. Product makers, representing drug and device manufacturers, comprise the sixth group, and principal investigators, or other researchers, make up the seventh.”

  2. Community Tool Box: Identifying Stakeholders and Their Interests:

    “Stakeholders are those who may be affected by or have an effect on an effort. They may also include people who have a strong interest in the effort for academic, philosophical, or political reasons, even though they and their families, friends, and associates are not directly affected by it. One way to characterize stakeholders is by their relationship to the effort in question.

    • Primary stakeholders are the people or groups that stand to be directly affected, either positively or negatively, by an effort or the actions of an agency, institution, or organization.
    • Secondary stakeholders are people or groups that are indirectly affected, either positively or negatively, by an effort or the actions of an agency, institution, or organization.
    • Key stakeholders, who might belong to either or neither of the first two groups, are those who can have a positive or negative effect on an effort, or who are important within or to an organization, agency, or institution engaged in an effort.”

  3. PCORI Engagement Rubric for Applicants: PCORI articulates two main categories of stakeholders:

    PCORI articulates two main categories of stakeholders:

    • Patient partners: patients with lived experience, family members, caregivers, and the organizations representative of a population of interest.
    • Stakeholder partners: members of constituencies based on professional rather than personal experience. May include clinicians, purchasers, payers, industry, hospitals and health systems, policy makers, and training institutions.

What are the roles and responsibilities of stakeholders engaged in research?

Stakeholders in research have roles and responsibilities in several contexts, which may vary over time. Researchers should be clear at the outset of engagement efforts regarding both the stage of the research and expectations for stakeholder involvement in decision making.

  1. Roles at different stages of research: Stakeholder roles and responsibilities may vary across stage of the research process, including research planning and design, research conduct and implementation, and research dissemination.
  2. Roles in decision making: Across stages of research, stakeholder roles and responsibilities vary with respect to level of participation in decision making about research activities.

Frameworks for articulating stakeholder roles at different stages of research and participation in decision making include:

  1. PCORI Engagement Rubric: PCORI articulates activities in which stakeholders can be engaged for study planning, conduct, and results dissemination.
  2. International Association for Public Participation (IAP2) Public Participation Spectrum: Stakeholders (members of the public) may participate in ways that range from low to high impact on decision making, from simply being informed to being fully empowered to make decisions.

The Stakeholder Engagement Navigator is a service of the Data Science to Patient Value Initiative at the
University of Colorado Anschutz Medical Campus

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