Playbook | Cultivating a Successful Partnership Throughout the Clinical Trial Continuum

PLAYBOOK | Cultivating A Successful Partnership

Cultivating a Successful Partnership Throughout the Clinical Trial Continuum: From Awareness to Execution

Did You Know?

There are several reasons why individuals choose to participate in clinical trials. Based on a study of perceptions and insights conducted by CISCRP, the number one reason patients do not participate in clinical trials is they are simply not “aware” of the opportunity.

Patient communities and biopharmaceutical companies have the opportunity to collaborate on programs that effectively build awareness about clinical trials in a non-biased effort that effectively addresses the questions and needs of the community. These collaborations can build trust among patients and help remove systemic and structural barriers to participation.

Best Practices for Co-Developing Disease Awareness and Study-Related Communications

Many patient advocacy groups are open to working with pharmaceutical companies to raise awareness about and recruit for clinical trials. The following strategies outline a collaborative approach between pharmaceutical companies and patient advocacy groups for effective clinical trial education and patient recruitment:

Ensure that the materials are inclusive of all backgrounds, identities, and groups, using culturally appropriate language. When working with patient advocacy groups to co-create study materials, incorporate terms, images, and concepts that are easily understood and resonate with the affected population.

Simplify information. Avoid medical jargon and overwhelming lists of side effects, while presenting materials at a 3-4 grade educational level.

Benefits for patient advocacy group constituents and the overall patient community:
– Awareness of clinical trial opportunities that may provide benefits to participants (e.g., access to healthcare, and treatments)
– Increases the chance that clinical trials will enroll and retain the needed number of participants to answer research questions.
Benefits for the patient advocacy group as an organization:
– Increases engagement with constituents through providing information about research opportunities.
– Increases organizational awareness of potential therapeutic options.
– Builds relationships within industry partner organizations which may lead to additional engagements, other types of partnerships.

Best practices for patient advocacy groups working with Industry on study communication engagements

Look for opportunities to involve your constituents/patients directly in the engagement as lived experience experts.
– If possible, seek individuals with a diversity of backgrounds and identities.
Understand what is appropriate compensation for the patient advocacy group as well as any individuals who take part in the engagement.
Discuss and align on the patient recruitment process early on with Industry to ensure both parties are comfortable with the tactics set forth.
Recognize that the Industry partner may have multiple people, departments and/or vendors involved.
– Contacts may change as people leave/join the company or change roles.
– Bureaucracy and delays may be unavoidable for large, complex organizations.
Industry may have constraints on the nature or content of communications due to the need to comply with biopharmaceutical regulations.

Types of patient-facing communications that are typically developed for clinical trials:

Informed consent elements document (for prospective participants)
Recruitment materials
Brochures, social media posts, email messages, TV/radio ads, etc.
Trial results from journal articles, conference posters, lay summaries, videos, and infographic reports.
Case studies

Communication Resources

Talking to Your Patient About a Clinical Trial | National Institutes of Health (NIH)

Creating a best practice template for participant communication plans in global health clinical studies | (biomedcentral.com)

Advancing Health Literacy in Clinical Research: Clear Communications for Every Participant | National Academy of Medicine (nam.edu)