Jacqueline Alikhaani, a rare disease heart patient and partner on the ADAPTABLE Study, is passionate about the value and impact of novel clinical research studies that leverage electronic health records and common data resources, and includes patient input at every critical step in the process. “One of the special things about the ADAPTABLE Study is that everything is laid out on the table for patients to see. We touch every part of the trial. I think we’re going to be a great model for other clinical trials,” said Alikhaani.
For the second consecutive year at the American College of Cardiology annual conference, patient partners, clinicians, and researchers discussed the patient-researcher partnership in the ADAPTABLE Study. ADAPTABLE (Aspirin Dosing: A Patient-centric Trial Assessing Benefits and long-Term Effectiveness) is a pragmatic clinical trial that compares the effectiveness of two different daily doses of aspirin widely used to prevent heart attacks and strokes in individuals living with heart disease.
The panel presentation supported by CardioSmart included Alikhaani as well as another patient partner Bill Larsen; researchers Eileen Handberg and Daniel Munoz; and project leader Holly Robertson. Principal investigator Schulyer Jones moderated the session.
Larsen was introduced to ADAPTABLE through his work as a citizen scientist at the University of Florida. Larsen is most interested in reviewing study materials through the lens of a potential study participant. “I try to beat the drum of educating the general population about the importance of participating in clinical research,” said Larsen of his role in ADAPTABLE. Larsen is also looking forward to the day when results will be available and he and his fellow patient partners can help create result summaries using language easily understandable by patients.
Jones reinforced the immense contributions of the patient partners from the beginning of the trial and at every step along the way. He then turned the microphone to Munoz who said, “A lot of assumptions that we come in with as researchers and clinicians have been challenged, corrected, and improved upon by our Adaptors, the ADAPTABLE patient partner team.”
Handberg, who works closely with Larsen at the University of Florida site, explained that ADAPTABLE patient partners are embedded in the clinical research process and hold the research team accountable. “Bill [Larsen] and I are on a weekly call and without fail, Bill will inquire about enrollment and what can we do differently to improve our numbers.” Handberg also described how a successful recruitment postcard (see image at right) came about. “It was a patient-inspired and created piece that has resulted in a positive trend in enrollment.”
ADAPTABLE is funded by the Patient-Centered Outcomes Research Institute (PCORI) and is the first demonstration study of PCORnet, the National Patient-Centered Clinical Research Network. The study employs a wide range of digital and social media channels including a website, Twitter handle, and Facebook page to engage with study participants and the public at large. ADAPTABLE sends out a quarterly newsletter to study participants to introduce team members, provide study progress updates, and seek insights from participants on why they joined ADAPTABLE and the importance of patient-centered research.
“When I think of ADAPTABLE, I think of community,” said Robertson. “We are building a cardiovascular research community that not only includes the patient-partner voice but those of the study participants. Once the ADAPTABLE Study is complete, we’ll have a community of participants who we can engage with for future research projects to find out what’s important to them and what questions do they want answered by research. This community will be the legacy of ADAPTABLE.”