Building Upon the Unique Perspective of Patient Advocacy Groups

Sara Abbassi, MBBS, MSPH, clinical research coordinator, Wellnext LLC

As leaders in the clinical research enterprise seek to expand the public’s understanding of clinical trials and their potential benefits for healthcare at the personal, community, and national levels, communications tactics cannot remain stuck at the one-on-one rate of physician referrals or patient recruiters reaching out to individual potential volunteers for real progress to be seen. That’s part of the reason why Sara Abbassi, MBBS, MSPH, a clinical research coordinator (CRC) at Wellnext LLC and ACRP member, says that educating patient advocacy groups about clinical research is a critical component of the profession.

“Patient advocacy groups have a unique perspective on the needs and experiences of patients, and their involvement in clinical research can provide valuable insights that might otherwise be overlooked,” notes Abbassi, whose duties at a CRC include determining eligibility criteria for study participants based on their health status, demographics, and other relevant factors. “Think about it—patients are at the center of clinical research, so it only makes sense that their voices should be heard. By partnering with patient advocacy groups, researchers can tap into the expertise and insights of people who are deeply invested in advancing medical progress.”

Abbassi says that one point made by an ACRP 2023 speaker in an earlier ACRP blog was that involving patient advocacy groups in clinical research can lead to better study design, increased recruitment, and improved retention of study participants.

“This makes sense to me,” Abbassi says. “Patient advocacy groups have a deep understanding of the patient experience, and they can help researchers design studies that are more patient-centered and relevant. But it’s not just about study design—educating patient advocacy groups about clinical research can also help to increase public awareness of the importance of clinical trials.”

When patients and their families are well-informed about clinical research, Abbassi adds, they’re more likely to consider participating in trials, which can help to accelerate the pace of medical progress.

“In my opinion, building strong partnerships between researchers and patient advocacy organizations is critical to advancing the research enterprise and improving patient outcomes,” Abbassi says. “When we work together, we can ensure that the needs of patients are front and center and that our efforts are focused on improving health and well-being for all.”

[This blog is adapted from a LinkedIn post by Abbassi in reaction to an ACRP 2023 session on “Educating Patient Advocacy Groups” that was presented by Stephanie Christopher, MA, CCRC, FACRP, director of patient advocacy at Pfizer, and Janet Mauro, BA, CCRC, IAMRARE® implementation co-lead at the National Organization for Rare Disorders, Inc. That session is available as part of a Regulatory & Compliance replay package of conference sessions or in the Full Program replay package.]

Edited by Gary Cramer