Implementing the Expectation: Early & Ongoing Engagement

The following examples illustrate situations researchers and partners have faced on PCORI-funded projects related to early and ongoing engagement. Reviewing and discussing these examples can help project teams plan for and implement approaches to engage partners early and often, as well as anticipate challenges that may arise as the project progresses. 

Example 1. Learning to involve partners earlier in the study planning

Researchers spent a lot of time and effort developing study plans to present at an advisory board meeting. The patient and clinician partners on the advisory board let them know that these plans would not work and the researchers realized they would need to spend more time to redo the plans. The partners were left feeling that their role was more reactive than proactive and asked the researchers why they had waited so long to get their input. Researchers explained that, although they were compensating the partners, they had not wanted to overburden partners with requests for their time. Partners reassured the researchers that they would prefer to be involved as early as possible and felt comfortable saying no if they did not have the time or the ability to provide input.

How can project teams engage with partners early on?

• Discuss and determine roles. Researchers and partners should work together to clearly identify partners’ roles and time commitments for the project. Although some partners may prefer to be in a reactive role, others will welcome working in partnership to develop study plans.
• Identify communication approaches. Teams should determine the timing of meetings and how best to communicate at different points in the project. Getting input early, even if plans or products are not fully developed, can be more efficient than having to revise approaches later. For example, teams may want to have more frequent meetings early in the planning process or project to make key decisions. Also, teams may discuss whether individuals are available to respond to email or other types of requests for their expertise.
• Be open to learning and change. Researchers should be open and responsive to partner suggestions, even if it may mean altering plans. Incorporating different perspectives strengthens the study planning and conduct and ultimately helps to make sure the research is relevant to those most affected by the research topic. Also, teams can normalize the different types of actions to expect from partners, such as confirming, validating, questioning, critiquing, challenging or redirecting, advocating and innovating.

Example 2. Maintaining clinician partner engagement over time

Researchers invited several clinicians to partner with them on a clinician advisory council at the start of the study. By the end of the study, few of the invited clinicians were consistently participating and the clinician advisory council was no longer being convened. Researchers reflected on and identified possible reasons for declining participation. First, some meetings were held at times when clinicians had clinical responsibilities and were not available. Second, study leadership was not present at the clinician advisory council meetings. Lastly, decisions made by the study team did not always reflect priorities that clinicians said were important. As a result, researchers felt that they may have inadvertently discouraged participation by conveying that clinician perspectives were not valued.

What can project teams do to maintain clinician partner participation?

• Discuss and revisit responsibilities and expectations. Researchers and clinician partners should work together to clearly identify responsibilities and participation expectations throughout the project and revisit them as needed. Study teams should also discuss and address potential barriers to clinician partner participation, such as competing clinical demands, meeting times, or compensation.
• Communicate the value of participation. Study leadership can communicate the value of partnerships and input by attending meetings, listening to suggestions and explaining why input may not be implemented.
• Obtain feedback about the process. Teams can hold informal check-ins with partners about their experiences. They can also reach out to partners if they stop coming to meetings or responding to requests to understand why and seek to re-engage them by addressing any concerns.