The Power of Patients as Partners 2023 Conference: Turning Insights into Action

I enjoyed attending the 10th Annual Patients as Partners in Clinical Research conference earlier this month. I had access to real-world examples from peers in pharma, the FDA, patient advocates, and patient engagement and recruitment agencies to learn how patient involvement is implemented to drive greater efficiencies in clinical trials. There were various transformative discussions around the shift to partner with patients over the past several years, along with the insights, opportunities, and actions we can all take to co-design the future of healthcare with patients and their families. From these transformative discussions, a few themes were threaded throughout the conference: diversity and inclusion patient engagement strategies, returning data to patients, and design thinking for patient engagement and decentralized/hybrid trial designs—along with some key takeaways:

• Invest in Community Engagement. Be bold and invest in engaging with the communities we want to serve. Before, during and after the study, be there and stay with the community to create a safe space for engagement. If you don’t know the culture, don’t fake it. Learn and be willing to be vulnerable. There must be a mutual benefit.
• Incorporate DE&I in Your DNA. Keep talking until things change and turn words into actions as we are still far away from being truly inclusive and representative of all patient populations in clinical research; time is running out as the makeup of the population is changing. We need to ensure all stakeholders have the knowledge, skills and resources to embed diversity and inclusion across the drug development process.
• Create Trustworthy Content. Develop tools for individuals who lack trust in pharmaceutical companies. In addition, provide resources (chart reviews, study coordinators, data entry, etc.) to help clinical site staff—who have been severely understaffed post-COVID—with their referral efforts.
• Include Patient Voices. Incorporate the patient voice into our clinical trials, particularly the inclusion/exclusion criteria, schedule of events, and burden associated with trial participation through protocol development and embed it into processes.
• Get an Early Start. Conduct decentralized clinical trials early—once the design of the trial starts, not when the protocol is finalized. Starting earlier in the trial design can help improve trials overall.

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In an environment where clinical trial recruitment often consists of a collection of turnkey templates and tactics, Spectrum focuses on developing customized, strategy-driven solutions to reach, engage, enroll and retain diverse participants. To successfully recruit, our patient guided approach establishes a connection with patient communities by elevating their individual needs above all others. Our recruitment activities can take many forms but are fundamentally rooted in engaging our audiences to inform, test and roll out resources that touch the true essence of life as a patient or caregiver. By tapping into their personal experience and voice—both physical and emotional—we create a deep connection and position study sponsors as trusted leaders who understand their challenges and needs.

At Spectrum, we’re acutely aware that health issues do not discriminate, and we believe that clinical trials should not either . Our vision is for all trials to reflect the diverse and inclusive populations afflicted by conditions being studied, helping to generate data with broad applicability across geographies, races, ages and genders.

For us, diversity in enrollment does not mean swapping out stock photos to be more diverse or simply translating materials. To achieve representative study populations, we must ensure everything we do reflects the needs of the populations we want represented. At Spectrum, that starts with listening, which helps us gain deep insights into the informational needs and systemic barriers that exist for distinct groups of people in the clinical trial ecosystem. Once we understand those needs, we create bespoke solutions that are tailored to empower and activate at each step of the recruitment and retention journey. We hope you’ll join us on our journey.

This article was orginally published on LinkedIn by Zena Smith, SVP, Cinical Trial Recruitment.