Opinion: Change Words into Action. Let’s Be Disruptors.
Developing treatments is hard work but so too is engaging communities. Let’s disrupt the current paradigm and take action to ensure new treatments truly meet the needs of diverse patients.
Developing safe and effective treatments is a difficult task. It takes a lot of experts, time, patience, and creative thinking. A critically important question that must be addressed is how can we be sure that participants in clinical trials reflect the population which the product intends to benefit? And we know this is not an easy question to address.
I recently participated in BIO’s Clinical Trials Diversity Summit on a panel entitled The Imperative of Community & Patient Engagement: Building Trust in & Awareness of Opportunities to Participate in Clinical Trials. The summit provided a fantastic forum to exchanges ideas, listen, and learn from each other, and explore various approaches and strategies to engage communities that have been hesitant to participate in clinical trials. Conversation and an exchange of ideas are valuable, but our work cannot end there. We must also put those words into action.
Doing thing differently means taking risks, getting comfortable with being uncomfortable. Pyxis Partners is an engagement awardee to the National Institutes of Health, All of Us Research Program, a bold effort to bring together one million individuals that reflect the diversity of the U.S. to donate their health data to create one of the largest and most diverse resources that allows researchers to conduct thousands of studies on health and disease.
Since the beginning, our team laid out a clear engagement strategy anchored in building transparent, long-term relationships with communities across the U.S. The goal is to support communities in their engagement journey – from awareness, education, credibility, trust, support – by creating real partnerships with community and provider organizations, who are trusted voices. Before we even ask someone to participate in research, we build relationships founded in respect and transparency. Our team created support tools and forums, worked in collaboration with partners to co-create materials all towards helping them create safe spaces within communities for important and sometimes hard and raw conversations about participation in research.
We measure our impact, not by the number of people who have enrolled, but how have we helped move the needle on engaging communities in wanting to learn more, have another conversation, tell their friend about the program, among others. In the end, we are successful because communities have had the space to learn and talk and make informed choices about participating in research.
My experience with All of Us tells me we must give that same expertise, time, patience, and creativity to engaging patients and communities as we do towards building the science to develop new treatments or a cure. Let’s build sustainable relationships built on transparency and trust. Let’s recognize that if we really want to do things differently, to make commitments to communities that have been underrepresented in clinical trials, we need to change the narrative and our actions. Let’s be disruptors.