This report is available in PDF (533 kB) only. People using assistive technology may not be able to fully access information in this file. For additional assistance, please contact us.

Abstract

Objective

This literature review presents a summary of the state of the art in methods that organizations use to involve stakeholders – patients, consumers, practicing clinicians, payers, and others – in health care research and in activities in related fields. This research was conducted by the Community Forum, a project funded by the Agency for Healthcare Research and Quality (AHRQ), to identify emerging strategies in stakeholder engagement to enhance stakeholder involvement in the Agency’s Effective Health Care Program and other health care research activities.

Data sources

We reviewed peer-reviewed literature, grey literature, and Web sites, and conducted interviews with key informants (KIs) experienced in stakeholder engagement.

Methods

To guide our search, we developed a conceptual framework for stakeholder engagement. We used the key word search terms listed in Appendix A to search peer-reviewed literature in academic databases and grey literature and Web sites using the Internet. We applied inclusion/ exclusion criteria (Table 1) that emphasized innovation including the use of technology. We then abstracted all sources and analyzed findings. The final review included 23 peer-reviewed articles, 15 grey literature documents, and 43 Web sites (Appendix B).

Additionally, we identified 11 key informants experienced in stakeholder engagement within and outside of health care. We used a semi-structured interview protocol designed to elicit information on innovations in stakeholder engagement. The KIs provided information on many of the methods described in this report, and suggested additional organizations and Web sites to explore in the concurrent literature scan.

Results

Based on the literature review, we describe types of organizations that work with stakeholders, the specific groups (eg., local residents, advocacy groups, or professional societies) that organizations identify as stakeholders, organizations’ motivations for involving stakeholders, points in the research process where stakeholders can contribute, how organizations prepare stakeholders to meaningfully participate, and stakeholders’ motivations for participating in research projects. We found very little that described the evaluation of stakeholder engagement processes or outcomes related to stakeholder engagement activities. A recurring theme in the literature was the importance of building trust, both for encouraging stakeholders to become involved and in maintaining their involvement.

We identified a number of uses for technology in working with stakeholders throughout the research process. Many organizations use their Web pages to post available research projects and recruit for research participants or use online matching services for available projects and participants. Online collaborative platforms are used to generate ideas, promote discussion about these ideas in an online forum, and then to rank or vote on the ideas. Online communities are used to recruit participants for idea generation, to elicit feedback on product development, and to disseminate research findings. Product development challenges – contests where organizations challenge their members or the public to submit ideas for or create a product – are used to recruit new members, increase awareness of the organization issuing the challenge, and provide insight on stakeholder preferences and needs.

Key informants (KIs) described examples of their stakeholders, definitions of innovation, examples of practices they have used and consider innovative, how they currently use technology, and challenges to engaging stakeholders. The KIs described a range of innovative practices, consistent with definitions of innovation that emphasized flexibility and effectiveness as well as non-traditional activities. For example a KI in health care uses blogging to translate complex material into concise and engaging articles for the organizations’ stakeholders; multiple KIs mentioned using social media tools as means of eliciting input from stakeholders in prioritizing research projects and helping to design research. Overall, the key informants highlighted the importance of measures such as selecting stakeholders that recognize the issues under discussion as a priority, communicating to stakeholders the importance of their participation and the ways in which their input will be used, --tailoring the experience? to specific stakeholder populations, and appropriate approaches to presenting data. The group described use of technology in the form of social media marketing/advertising; social networking (Twitter, Facebook, blogs); and social media tools (IdeaScale, UserVoice, Salesforce).

The KIs identified challenges to engaging stakeholders that included attracting stakeholder interest in their organization, educating stakeholders concerning their organization, incorporating new technology and methods, and resource constraints on both stakeholders and organizations.

Conclusions

Based on our review, we identify five priority methods that researchers working with stakeholders may wish to consider to enhance the process of engaging stakeholders and stakeholders’ ability to contribute meaningfully to the organization’s activities. These methods are relevant for stakeholder recruitment and preparation and for stakeholder involvement in topic identification and prioritization, product development, and dissemination of research findings and products (Table 8). The five methods are:

Online collaborative platforms

Computer software that enables interaction between an organization and its target audience through a Web site or virtual space. Collaborative platforms allow stakeholders to suggest, vote for, rank, or comment on ideas about a particular topic; they allow for frequent feedback by a forum facilitator and a feedback loop to 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 products. Participants compete for a chance to win prizes from the host organization, while providing input on topics of interest and generating creative ideas for dissemination and implementation.

Online communities

Virtual communities where participants communicate, 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 the topic.

Grassroots community organizing

Efforts using a local, ground-up approach that can be useful for spreading awareness of and building trust in an organization, for recruitment, and for product dissemination.

Collaborative research

An approach to research that integrates stakeholders in stages in order to enhance the relevance of the work to the end users.