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Patient Focus in Clinical Trials

What do participants want from a clinical research study? We asked and learned that it’s the “3 Cs” – customization, compassion and community.

smiling woman forms a heart with her hands

The biopharma industry, over the last decade, moved patient needs front and center. Safety and efficacy remain first and foremost in any clinical trial, which is a strictly controlled research study into a potential treatment. But we’re also seeing an increased focus on how participant needs are communicated, interpreted and realized when they take part in this important research.

One obvious way to learn what trial participants want is to simply ask them. CSL, a biotech leader known for its patient focus, did that most recently in two workshops – one in the United States and one in Europe. We consulted with patients who have rare diseases, as well as their caregivers, to gather feedback about the broad topic of clinical trial participation. I’d like to share insights from these sessions:

Our biggest takeaway was this: Participants take part in a clinical trial with the hope of helping themselves, but it is equally important to them that the potential treatment could also help others. To me, that speaks volumes, especially in a world with so much focus on the “individual.” These patients, many of whom have gone through their own struggles with health, embody the intention of action for the greater good.

We partnered with the Center for Information and Study on Clinical Research Participation (CISCRP), an independent non-profit organization focused on educating patients and the public on clinical research. CISCRP helped to recruit a diverse group of patients and caregivers within the rare disease community to represent a range of opinions that bridged race, age, disease state and clinical trial experience. In the relaxed, informal meetings, participants shared their experiences with their disease, including their diagnosis and their experiences (if any) in clinical trials. What would be important to them when participating in a clinical trial? What should sponsor support look like? What are examples of recognition and appreciation “done right?”

Through hands-on, creative activities, the team explored this further and looked into a variety of approaches. Participants were eager and supportive as they explored these ideas with us and offered honest, productive feedback. After the sessions, we launched a survey to collect additional feedback from a broader range of patients and caregivers globally. According to the meetings and survey, they’re motivated by what we are calling the “3 Cs:” compassion, community and customization.

Compassion: We found that participants have a deep well of compassion for others like them – and they hope the research they’re participating in will help others. Having any disease, especially a rare disease, can make a person feel helpless, isolated and scared. Many patients in our workshops said they wanted to donate their reimbursement fees to a related charity or support group. Others said they wanted to partner as a “buddy” with a patient new to the clinical trial experience to help them through the process.

Community: Having a serious disease can be overwhelming and involves a lot of learning, so it’s no surprise that patients ranked “community support” high on their list. Participants valued support groups during and after the trial. They also appreciated when the disease community recognized them for their efforts in trial participation. TV commercials, billboards and other acknowledgements meant a great deal to them. These highly visible shows of gratitude also acknowledge that a clinical trial succeeds because of a joint effort. Signs like these can help educate the larger community, including potential future participants.

Customization: We relate to one another and engage in the world by sharing pieces of ourselves – our similarities and differences. What we share often gets reflected back to us in the form of personalization and customization. Trial participants have this same expectation. We see this in many other areas of life, why not in a clinical trial? It could be remembering a participant’s birthday or knowing what makes them more comfortable during an IV infusion. These extra steps can go a long way to building a connection.

Now that we have these insights, we’re looking at how we can respond to these needs. How can we honor what patients and participants want most and deliver it? We want to be more flexible, to make it easier to participate in a trial, and to leave participants feeling fully acknowledged and appreciated for their contribution to advancing the science. We now understand that, rather than providing a blanket or tote for use in the study, we might say thank you best by enabling participants to donate their reimbursement fees.

Changes like this require a shift in thinking and I am hopeful this will be very impactful for current and future participants. CSL’s promise as a company is to put patients first and deliver for them. We are grateful to the participants who provided these important insights. We commit ourselves to keep listening to patients and their caregivers, and to grow with them as their needs evolve.