People-centricity was front and center during the recent Building Trustworthiness in PCORnet public webinar, which took place on September 16, 2016. Similar to PCORnet’s Building Trustworthiness inaugural event in March 2016, the webinar was an opportunity to foster broad and rich discussions by listening deeply to community experts as they provide actionable insights on how we build a national clinical research network that communities can trust. In this webinar, moderated by Lesley Curtis, co-lead of the Distributed Research Network Operations Center for PCORnet, attendees heard perspectives from Sharon Terry, co-principal investigator, PCORnet Coordinating Center and principal investigator, Community-Engaged Network for All (CENA) Patient Powered Research Network (PPRN); Annesa Flentje, assistant professor at the University of California in San Francisco; Jennie David, former Patient Advisory Council co-chair for the ImproveCareNow PPRN; and Neely Williams, a patient advocate and administrator for the Community Partners Network and co-principal investigator for the PCORnet Bariatric Study.
Sharon set the framework for the session by challenging the audience to shift its approach to clinical research from the traditional sense of work that is done to the community to work that is done with the community. “We recognize that much of PCORnet’s research potential is gleaned from the knowledge and expertise of its stakeholders and partners,” she said. “Approaching clinical research with this posture of humility is just one feature that makes PCORnet so revolutionary.”
Annesa serves as the mental health lead for the PRIDEnet PPRN-affiliated Pride Study, which aims to help health professionals better understand the needs of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community. She kicked off her presentation with a focus on sexual and gender minorities, noting that in many cases, the key to building trust with this community is acknowledgement and respect.
“Many members of the LGBTQ community are not even asked about their gender identity and sexual orientation in research protocols,” said Annesa. “Failing to even ask about sexual orientation and gender identity makes this community invisible in our research. With simple efforts, like asking about gender identity prior to birth identity in our queries, we can show greater respect for this community and go a long way toward building trust and engagement.”
Jennie spoke next and leveraged the webinar to shed light on the pediatric chronic illness community. Using her own experience as a young patient with severe Crohn’s disease as an example, she explained how clinicians often diagnose pre-emptively without seeking to understand the rich spectrum of a patient’s lifestyle outside of his or her disease state.
“When I learned my large intestine needed to be removed, my surgeon assumed that for vanity reasons, a young woman like me would not want an external ostomy solution. But I had done research on my own and knew that the alternative procedure he suggested would lead to outcomes that were not a fit with my lifestyle and values,” said Jennie. “It is so important to remember that we are unique people with our own voices first and foremost—not patients, and definitely not research subjects. Our role as a patient is just one layer of identity in the broader spectrum of people’s lives.”
Finally, Neely closed the webinar with her perspective as an African American woman who struggles with obesity. African Americans and people who are obese are often under-researched and under-represented in clinical studies. She explained the need to humanize data by using storytelling to transmit research results back to the community.
“When I speak to my community, I frequently hear that researchers came, they researched, and they were never heard from again,” said Neely. “If we want to build rich and beneficial relationships, it is essential that we bring communities into the fold by reporting outcomes and keeping the lines of communication open.”
Take a moment to read Neely’s opinion editorial recently published in The Tennessean.
Among these varied suggestions, one piece of advice from each presenter was consistent: we must keep the conversation going.
“We will never learn all that we can in a one-hour webinar or even a two-day workshop,” said Sharon. “This event was a great success, but there is still work to be done. Building a trustworthy, people-centered PCORnet necessitates frequent provocative discussions such as these, and I am already looking forward to the next opportunity to learn how we can make PCORnet a beacon for trustworthy clinical research.”