Key takeaways from the 8th annual Patients as Partners conference
The annual Patients as Partners conference, now in its eighth year, has always been one of our favorite meetings to attend because of the care the organizers give to ensure all stakeholders, and especially patients, are represented on the agenda. Antidote’s Head of Partnerships and Patient Advocacy, Lindsey Wahlstrom-Edwards, attended this year’s virtual conference and shared her key takeaways.
The conference centered upon three key themes — equity, inclusion, and co-creation — and heavily featured examples of how industry leaders and patient advocates have moved from merely talking about collaboration to actually making it happen in meaningful ways.
Equity, inclusion, and co-creation in clinical trials and research studies
The themes were highlighted in a keynote presentation from CISCRP’s Ken Getz, who underscored the growing complexity of clinical trial protocols throughout the last twenty years. According to data published by CISCRP, engaging “Patient Advisory Boards” has resulted in the creation of less complicated protocols overall, with fewer protocol amendments and fewer eligibility criteria, among other factors. These changes have caused clinical trials to cost less money and take less time, which demonstrates great benefit to sponsors, according to Getz.
Reflecting on additional sessions, the positive impacts of patient engagement during the lifecycle of research are intuitive. Patients are the end-consumer and, as Alex Charge, SVP, Offerings and Marketing at Hū, noted, there are applications for traditional product and marketing strategies, like user experience research and persona development, when it comes to understanding patient communities. After all, not all patients are created equal.
Hū EVP and General Manager, April Lewis, expanded on the idea of audience segmentation in the context of decentralized clinical trials (DCTs). Lewis shared data collected from a national, representative sample demonstrating that while DCTs are a mechanism of engagement for some of the US population, more than half (55%) of survey respondents reported they would rather attend in-person visits for several reasons, ranging from concern about having access to appropriate medical equipment in the home to worry about pets interfering with the visit.
Several presentations focused on collaboration between clinical trial sponsors and patient advocacy organizations. Jessica Scott, MD, JD, Head of R&D Patient Engagement at Takeda, gave examples of shifting clinical trial endpoints and measurement tactics for patients with a condition called Fredrich’s Ataxia in order to better reflect the concerns of the community.
Patient advocacy group engagement across the research continuum is particularly important. Jodie Gillon, Chief Patient Officer and VP, Clinical Affairs, Abeona Therapeutics, discussed her reliance on advocacy group Debra of America to serve as the voice of the patient by providing appropriate channels for patient feedback without risking privacy violations. Similarly, Sarah Krüg, CEO of Cancer 101, reiterated the importance of getting patient engagement right from the start for the simple reason that “trust takes years to build, seconds to break, and forever to rebuild.”
The theme of trust was central to the discussion of equity, inclusion, and access to clinical trials. Quita Highsmith, Vice President and Chief Diversity Officer, Genentech, highlighted the importance of clinical trial sponsors being in the community and working with trusted voices. In discussing communities of color, she said, “Fake news says people don’t want to participate. That’s not true,” citing a study Genentech enrolled in which 85% of participants were Black. She added that if Genentech can do it, “then so can the next company.”
Gaurav Dave, MD, DrPH, MPH, Associate Professor of Medicine at the University of North Carolina at Chapel Hill, reinforced this theme with a discussion on the difference between equality and equity and the need to engage patients as true stakeholders early on so that study design can take the real patient experience into account. “Patients’ lived experiences are an invaluable resource,” he concluded. We agree.
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