SWOG's new patient advocate committee (PAC) leadership – co-chairs Barbara Segarra-Vazquez, DHSc, and Anne Marie Mercurio – stepped into their roles at the close of our fall 2023 group meeting.

They’ve had a busy few months since then, learning their roles, meeting one-on-one with PAC members to learn more about member priorities and expectations, and working to find new colleagues for three position openings. Tasks and challenges ahead include better defining the role of SWOG’s community advocates and formalizing a process to more fully integrate them into the group’s work.

The two are also stepping into the role of resident patient advocate on our weekly triage review calls, a spot previously held (and masterfully executed) by Hildy Dillion, patient advocate vice chair emeritus.

After the fall group meeting, Anne Marie and Barbara surveyed PAC members to learn what had worked in Chicago, what hadn’t, and what advocates wanted from future group meetings. They heard that, in addition to wanting to be heard, respected, and valued, their colleagues were interested in fostering more interaction within the committee – more opportunities for cross-pollination.

The co-chairs have accordingly restructured the committee’s monthly meetings to devote the bulk of each session to intra-group information sharing and supporting individual advocate’s efforts and projects. This also provides opportunities for newer advocates to learn from those with longer experience, leveraging skills already in the PAC to benefit PAC, committee, and patients.

To help ensure transparency, the co-chairs also open each meeting with an update on their PAC work over the previous month, and they bookend this by closing the session with a look-ahead to opportunities, commitments, and projects they anticipate in the month to come.

One of their most exciting ideas is an initiative that invites researchers to bring proposals at their formative stage to a group of advocates for review and discussion, to gather early feedback.

At the fall group meeting, with encouragement from Dr. Dawn Hershman, SWOG group co-chair-elect, Barbara extended an invitation to her colleagues on the cancer care delivery committee to “pitch the PAC” on their research ideas that were then in the earliest stages of development. The offer prompted immediate interest from several researchers, and one study team in particular reached out to schedule the first Pitch the PAC review session.

That meeting was held in late November and featured three investigators presenting a study proposal to 14 PAC members. Advocate feedback from the session has led the investigators to reshape their proposal in a number of significant ways, changes they recently detailed in an enthusiastic email to PAC leadership thanking the committee members for their input and suggesting the project team update the PAC twice a year on study progress, opening opportunities for regular advocate feedback on the project.

Clearly, this pan-committee approach differs from the standard operating procedure of developing study concepts with input from one or two advocates within the bounds of a given committee, and Pitch the PAC does not seek to replace that approach.

But as a forum for soliciting the patient perspective in the earliest stages of study development, it offers its own set of potential benefits.

For one, it brings together advocates from multiple disease areas, with different backgrounds and expertise, to provide diverse input on a project. This can be particularly valuable for studies that cross disease areas.

The approach can also bring both research advocates and community advocates to the table, providing an even broader and more valuable range of perspectives across more communities and groups of patients.

Finally, it can even represent something of a professional development opportunity for the advocates themselves, as they have a chance to hear a varied group of colleagues asking questions about a project, and they can learn from each other to improve their practice as advocates. 

“Pitch the PAC” is a label that may or may not stick as the initiative evolves, but the PAC leadership team is excited to see how they can formalize this effort, and they have a second session, with another study team, on the calendar in February.

They want SWOG researchers to know this opportunity exists, even in beta, and that investigators with early project ideas seeking patient input can contact them at barbarasegarra@swog.org and mercurio@swog.org to schedule a PAC review.

As our patient advocate committee refines this initiative, under whatever name, I’ll certainly share the results in a future Front Line. But consider this your chance to help shape the concept at ground level.

Interested in pitching your research proposal to the PAC? Email Anne Marie and Barbara directly. And prepare to be wowed.

 

Register now for our Best of SWOG webinar scheduled for next Wed, Jan 31, 2–3 ET / 11–12 PTView the agenda. CME credit will be offered.

 

Spring Group Meeting Registration: Registration for SWOG’s spring meeting (April 3 – 6 in Seattle) will open Tuesday, January 30. Watch swog.org and your email for notices.

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