What Makes Stakeholders Want to Become Involved in Research?


May 2, 2016

A doctor sitting at a desk, using a laptop

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Researchers from the RAND Corporation and the National Pharmaceutical Council spoke with representatives from the insurer, employer, and drug device and medical equipment industries about their views on comparative-effectiveness research and the work of the Patient-Centered Outcomes Research Institute (PCORI). This is the second of two blog posts summarizing the findings of the study.

Comparative-effectiveness research is meant to inform patients and other stakeholders about the benefits and risks of different drugs or treatments. Because stakeholders have varied opinions and beliefs about the benefits and risks that matter most, involving them in this research is important. Unfortunately, competing demands for stakeholders' time can make their involvement in comparative-effectiveness research a challenge.

To understand why certain kinds of stakeholders do or do not get involved in comparative-effectiveness research, we held group discussions with a total of 76 representatives from the employer, insurer, and biopharmaceutical, medical device and diagnostic industries. We learned that investigators seeking to work with these communities should consider several important factors:

Make a Business Case for Becoming Involved

Participating in research is an investment of time and resources above and beyond a stakeholder's daily work. To demonstrate that this investment is worthwhile, researchers should explain how the study overlaps with or supports the stakeholder's business interests. Using concepts like “costs to the bottom line” (e.g. employee benefits, premiums , absenteeism and “presenteeism”) and “return on investment” can aid in making research useful to industry, insurer, and business communities. Researchers can build support for stakeholder involvement in research if they can articulate the business case for being involved in it.

Work Around Existing Schedules

To encourage stakeholder participation in research activities, researchers must take business cycles into account. For example, most employers and insurers are locked into an annual insurance benefit open-enrollment period beginning around Oct. 1. This work requires months of preparation and follow-up each year and constrains their ability to focus on other activities.

Enable Involvement by Preparing Carefully

Several stakeholders reported that knowing how long a study will take, precisely what their role in the study will be, and having an organized and efficient research team were important. Some groups also reported that financial incentives can make participation more attractive for organizations operating on thin margins.

Request Engagement Through Trusted Business Partners

Most industries have existing relationships that researchers can use to recruit stakeholders for involvement in a study. Researchers should reach out to professional or trade organizations and publications to identify the best way to engage stakeholders in research.

The message is a simple one: Research leaders should clearly articulate the expected benefits of involvement, conduct the project on a timeline that works for the stakeholder, and be organized so that they can work efficiently with stakeholders.

Thomas W. Concannon is a policy researcher, Virginia Kotzias is a project associate, Dmitry Khodyakov is a sociologist, and Gavin Fahey is a research assistant at the nonprofit, nonpartisan RAND Corporation. Jennifer Graff is vice president of comparative-effectiveness research at the National Pharmaceutical Council. The study described above was sponsored by the Patient-Centered Outcomes Research Institute.

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