SIR Foundation holds RCP on patient-reported outcomes (PROs)
By Sharon W. Kwan, MD, FSIR Summer 2017
In spring 2017, SIR Foundation conducted a research consensus panel on patient reported outcomes (PROs), for which I served as principal investigator.
While some prior foundation-sponsored RCPs have primarily relied on experts from within IR, I wanted to assemble a more multidisciplinary panel for this topic. Given that certain other specialties such as orthopedic surgery and oncology are miles ahead of us in the development and use of PROs, I felt that it would be strategic to benefit from that expertise. Further, the methods used in the development collection, and analysis of PROs are complex and require highly specialized knowledge, so it was also clear that we needed researchers who have deep experience in PROs to be part of the panel. Finally, we obviously needed input from important stakeholders, such as patients/patient-advocates and research funders.
Ultimately, our 13-member panel was comprised mainly of individuals outside of IR, including:
- 3 PRO research scientists
- 2 surgeons
- 1 medical oncologist
- 1 patient advocate
- 1 representative from the Patient-Centered Outcomes Research Institute
I was pleasantly surprised by how many world-renowned experts, some of whom had never even heard of our specialty, were willing to take time out of their busy schedules and fly to Washington to participate in this RCP. Perhaps it has to do with how passionately people feel about the fact that the medical field can do a much better job of incorporating the patient perspective into clinical decision-making and outcomes assessment.
Our goal was to develop a set of priorities for our specialty pertaining to the use of PROs for IR research and IR clinical practice nationally. Despite the limited time available, we accomplished those goals. Our expert panel developed and approved eight prioritized lists concerning:
- The purpose of collecting PRO data in IR research and clinical practice
- Target populations for PROs in IR research and clinical practice
- Requisite PRO measure characteristics for IR research and clinical practice
- Specific avenues for advancing PRO use in IR research and clinical practice
Details about the RCP proceedings and these prioritized lists will be submitted for publication in the Journal of Vascular and Interventional Radiology (JVIR) in the near future.
Beyond the sets of priorities, we also wanted to establish a foundation for our specialty to understand and start to moving forward with respect to PROs. This RCP served to build relationships with other specialists who have much more experience in this arena than we do and with key stakeholders whose support will be required for us to make substantive and meaningful progress.
I thank all those who participated in the RCP. I was surprised by was the high degree of consensus around taking a practical approach to incorporating PROs into research and clinical practice. Particularly with the methodological experts and trailblazers in the field, I was expecting to encounter some dogmatism about the “proper” way to bring PROs into IR. However, in the end, everyone recognized that this work is challenging and that compromises will be required.
The good news, I think, is that we should be able to make a lot of progress with a few strategic investments and by leveraging the knowledge and tools that have already been developed outside of IR.