Federal agencies such as the Agency for Healthcare Research and Quality (AHRQ) work with patients, consumers, caregivers, clinician, researchers, and policymakers to ensure that research is relevant and responsive to stakeholder needs. Involving stakeholders in the process helps to focus the research on meaningful outcomes and increase the likelihood that people will accept and act on the results. AHRQ’s Community Forum** team recently conducted an environmental scan to identify strategies to enhance stakeholder involvement in the Agency’s Effective Health Care Program and other health care research activities.
Our review included peer-reviewed articles (23), grey literature (15), and Web sites (43). (Grey literature is material produced on all levels of government, academics, business, and industry in print and electronic formats, but which is not controlled by commercial publishers, i.e. where publishing is not the primary activity of the producing body.) We also conducted 11 key informant interviews with individuals experienced in stakeholder engagement within and outside of healthcare.
In the review we found a range of methods and recommended practices for stakeholder involvement. We identify five stakeholder engagement methods that have been used relatively little in health care research and that appear to hold promise:
- Online collaborative platforms: Computer software that enables interaction between an organization and its target audience through a Web site or virtual space allowing stakeholders to suggest, vote for, rank, or comment on ideas about a particular topic. A forum facilitator and feedback loop keep stakeholders aware of how their input is being used.
- Product development challenges: Contests in which an organization challenges its target audience to submit ideas for or to create tools. Participants compete for prizes provided by the host organization, while providing input on topics of interest and generating creative ideas for dissemination and implementation.
- Online communities: Virtual communities where participants share ideas and work together. Members are a subset of stakeholders that have voluntarily joined the community, making them more likely to be interested in a topic.
- Grassroots community organizing: Efforts using a local, ground-up approach to working with stakeholders that can be useful for spreading awareness and building trust in an organization, recruitment, and product dissemination.
- Collaborative research: Process that integrates stakeholders in all steps of a research project in order to enhance the relevance of the work to the end users.
Adoption of these methods by the research community and those interested in dissemination of findings could help to accelerate attention to research findings that can help practitioners, consumers and others in their search for better and more effective care. Although few studies have been done to establish the effectiveness of stakeholder engagement approaches or generate lessons on best practices, health care research is an area in which there have been substantial efforts to engage stakeholders.
While the focus of this work was on innovation, several themes emerged as important to consider when working with stakeholders. These include:
- gaining the trust of stakeholders before their involvement begins and nurturing this trust throughout the engagement process;
- selecting stakeholders for whom the decision or research has important consequences
- educating stakeholders on their roles, their responsibilities, and the topics being discussed;
- providing resources for stakeholders—especially consumers or practicing clinicians—to support their participation;
- utilizing trained and neutral facilitators;
- providing feedback to stakeholders on the results and the ways in which their input is used; and
- involving stakeholders as early as possible in the process.
Collaboration with stakeholders in research is essential to health care research that is reflective of real world patient, clinician, and policymaker priorities. Stakeholder involvement is an increasing government priority, as evidenced by the recent creation of the Patient-Centered Outcomes Research Institute and by the growing focus on stakeholder engagement efforts in funded research projects. The growing number and variety of stakeholder engagement efforts provides an opportunity to involve stakeholders in meaningful ways using methods that will be feasible for most health research organizations.
** This research was conducted by American Institutes for Research under Contract No. HHSA290201000005C to the Agency for Healthcare Research and Quality, Rockville, MD. The authors of this article are responsible for its content. No statement may be construed as the official position of the Agency for Healthcare Research and Quality of the U.S. Department of Health and Human Services.