Patients with vascular disease want to share their personal experiences, connect with other patients, and more actively participate in research to help others. Clinicians and researchers in vascular care have been largely unable to connect with patients with vascular disease and engage in patient-centered outcomes research. To create a network between researchers, clinicians, and patients trained in patient-centered outcomes research (PCOR), Dr. Adrienne “Addi” Faerber’s team has created an online course to teach patients with vascular disease in PCOR, along with sessions held at the 2017 Vascular Annual Meeting of the Society for Vascular Surgery. These sessions included a patient panel discussion that explored questions about how to improve the care of patients with vascular disease, and a patient-researcher networking reception, along with opportunities to learn more about PCOR in vascular disease research.
Goals: Bring together patients with vascular disease, researchers, and clinicians.
Create a network between researchers, clinicians and patients trained in patient-centered outcomes research (PCOR).
Build an infrastructure to permit patient-centered outcomes research in the field of vascular disease.
Funding: Patient-Centered Outcomes Research Institute (PCORI) grant, Society for Vascular Surgery, Society for Vascular Nursing
Findings and Lessons Learned
Patient Advisors brought up several key ideas during a panel discussion with clinicians on improvements to vascular disease, including:
- The desire of patients to engage with providers in high-quality clinical communication.
- The need of patients understanding the information given to them.
- The importance of families and caregivers in a patients’ care.
One of the challenges was course recruitment: initial physician referrals and outreach events didn’t lead to a large amount of sign up. To increase enrollment the team began a direct-to-patient recruitment strategy using social media to identify users who may have vascular disease. The change resulted into 19 new sign ups in 30 days. Patients with vascular disease were willing to enroll in an online course about PCOR that was easy to access, clearly designed, and meets their needs.
Close collaboration with conference organizers is critical to ensuring that patients can attend medical conferences and contribute effectively. While planning for the Vascular Annual Meeting, unexpected barriers consisted of conference registration, billing, payment and allowing Patient Advisors to visit the exhibition hall and to participate in some of the educational sessions. The team overcame this barriers through an open conversation with conference organizers about expectations and granting Patient Advisors full access to the conference while accompanied by project staff or other guides.
Patient-Centered Outcomes Research Institute (PCORI) – Project Summary