Engaging Patient Communities to Create Empowered Stakeholders in Clinical Research

April Schultz
May 3rd, 2016

The patient-centric movement in the clinical research industry has encouraged great strides towards a more collaborative clinical trial process. However, conversations regarding patient engagement in clinical trials are often still limited. In many ways, the perception that the general public can’t provide meaningful scientific contributions still casts a shadow over patient input in clinical research. Often, patients aren’t involved in conversations regarding trial design, leaving clinical research professionals to make decisions without consulting those directly affected.

To truly establish and maintain patient-centricity within the industry, patients need to be treated as stakeholders in clinical research and play an active role in study development and conduct. One important first step to achieving this level of collaboration is for clinical research sites and sponsors to establish proactive community engagement.

What is community engagement in clinical research?

For the purposes of this article, community engagement can be defined as site and sponsor communication and involvement with patient communities (as well as potential study participants) to promote industry collaboration. Community engagement can take many forms, including participation in disease awareness events, conversations with patient advocacy groups, or facilitated discussion with patients in online forums. These activities not only raise awareness for clinical trials, but also create open lines of communication between research professionals and participants.

While often beneficial to patient recruitment efforts, the focus for community engagement should not be to meet accrual requirements. The goal for community engagement is to foster collaboration between patient communities and clinical research professionals to improve the clinical trial experience and drive relevant research. Additionally, community engagement:

Provides the most direct opportunity to make a meaningful difference within a population.

Patient communities are the best source to determine the most relevant research for their population. Engaging patient communities can provide greater demographic and population-specific insight and drive research that is important and meaningful to them.

Ensures engagement and investment in research through collaboration.

Discussions with community members can also address motivators and deterrents for a population’s participation in clinical research. Armed with this knowledge, researchers can adapt study conduct and enhance the patient experience. These actions can improve retention and adherence by making patients feel they have been heard and have contributed to the trial design.

Helps reach underrepresented populations.

Community participation can also increase communication with underrepresented populations, such as women and minorities. Collaboration with these populations can lead to more relevant messaging and reduce stigmas within the community. Cultural and demographic-specific alterations to various aspects of the study could also lead to greater adherence and retention, resulting in more diverse and representative clinical trial data.

Builds trust between clinical research professionals and patients.

Actively engaging patient communities by listening to concerns, acting on patient recommendations and providing a study experience specific to each patient population, shows patients they are appreciated and their input is valued. These activities build trust between clinical research professionals and patients because both parties know their opinions and needs will be considered with equal weight.

Community engagement in action

To truly achieve engagement with community members, industry perspectives need to shift. Rather than only focusing on how to engage patients that are already participating in clinical trials, researchers should focus on how they can become more involved in the larger patient community.

Institutions such as Virginia Commonwealth University (VCU) and the University of Florida Clinical and Translational Science Institute have taken steps to communicate and collaborate with patient communities, promoting trust and proactive patient involvement.

As detailed in a recent press release, VCU published an article outlining benefits observed through community involvement in clinical trials. For one clinical study mentioned, the VCU Center for Society and Health dedicated the first full year of the study to community engagement, asking for input from patients and other stakeholders on preferred research methods. The majority of comments received during this period were from patients rather than industry professionals. The press release also mentions continuous community awareness and educational efforts conducted by the VCU Center for Society and Health, including sponsored training events. In the press release, Director of the VCU C. Kenneth and Dianne Wright Center for Clinical and Translational Research, F. Gerard Moeller, M.D., states “This work shows how VCU is working with researchers to make their research more relevant to the priorities and practices of the community.”

The University of Florida Clinical and Translational Science Institute has also shown marked efforts to engage their community through the HealthStreet program, an initiative created to “reduce disparities in health research and access to care.” This program improves connections and communication between community members, clinical researchers and medical professionals to allow for better patient care. HealthStreet also started the Our Community, Our Health initiative, a regularly held public forum that brings researchers into the community to facilitate open communication among all stakeholders about clinical research efforts.

The path to patient-centricity in clinical trials begins with community engagement. Members of patient communities hold valuable insight into the research needs of their population and should be included in discussions regarding clinical trial design and study conduct. Thus, developing an organizational strategy to continuously engage patient communities can show long-term benefits for the industry and community at large.

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1 Comment

One thought on “Engaging Patient Communities to Create Empowered Stakeholders in Clinical Research

  1. Advocates of community engagement assert that it improves health promotion and health research. However, the processes, costs, and benefits of community engagement are still a relatively new field of study.

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