Sometimes advocacy looks like a dinner where someone meets another person who understands what they’re going through.
Sometimes it looks like years of work to make sure patients help shape a clinical trial.
And sometimes it looks like creating a formal place for patient advocates to influence research across countries.
This week, I’m highlighting Allison Rosen, Sharon Rivera Sanchez, and Bar Levy. Their posts reminded me that bringing people together is only part of the work. What happens once they’re there matters just as much.
Allison Rosen: The difference showing up can make
Allison shared a reflection on an annual dinner that the Colon Cancer Coalition and Get Your Rear in Gear Houston bring together for colorectal cancer patients, survivors, and caregivers.
When they started hosting it more than 10 years ago, four people attended. This year, more than 35 came together.
But the moment that stood out to me wasn’t about the growth.
A recently diagnosed patient shared that she had never met another patient or survivor before. At the dinner, she could ask questions, hear from long-term survivors, and connect with people who understood something about what she was facing.
That’s why I wanted to feature Allison.
We can talk about community and peer support in broad terms. Her post shows what those words can mean for one person: walking into a room and realizing you don’t have to navigate what comes next without people who understand.
I also appreciated the reminder that this gathering started with four people. The connection mattered then, too.
Connect with Allison on LinkedIn
Read Allison’s original post
Sharon Rivera Sanchez: Show us where patients changed the plan
Sharon shared her experience presenting a poster at the Patient-Centered Outcomes Research Institute’s annual meeting about patient engagement in the RadComp trial, which compares proton and photon radiation therapy for patients with non-metastatic breast cancer.
Her post focused on how the RadComp Stakeholder and Advocacy Advisory Committee built a framework for continuous patient engagement—from planning before the award through enrollment and into 10-year follow-up.
What stayed with me was how she described the work:
“Our lived experience was treated as genuine expertise.”
That’s an important distinction. Being invited to share an experience is one thing. Having that experience influence the work is another.
Sharon also challenged the research community to do more than describe research as patient-centered:
“Show us where the patient’s voice changed the plan.”
That’s why I chose to highlight her this week. She gives us a clear question to ask about patient involvement—not just whether it happened, but what changed because of it.
Connect with Sharon on LinkedIn
Read Sharon’s original post
Bar Levy: Building patient perspectives into research
Bar shared the launch of the Gynecologic Cancer InterGroup’s Patient Advocacy Committee, with full support from its Board of Directors.
She and Linda Emery are co-chairing the initiative.
The goal she described is to embed patient perspectives into global clinical trial design and international collaboration, so research reflects patients’ needs and priorities.
One line captured the point:
“Patient engagement is not just an add-on; it is a fundamental pillar of impactful clinical trials.”
I chose Bar because her post is about building a structure for that involvement—not leaving it to chance.
She also included an invitation for patient advocates working with local gynecological oncology trial groups that are GCIG members: start a conversation at the group level about partnership and how to support the mission.
The committee’s launch is a beginning. What I’ll be interested in seeing is how that structure creates opportunities for advocates to help shape the work.
Connect with Bar on LinkedIn
Read Bar’s original post
Connection, contribution, and a place to lead
These are different kinds of advocacy, and each matters.
Allison’s post shows what can happen when people find others who understand. Sharon’s asks us to recognize lived experience as expertise—and show its influence. Bar’s describes a new structure for bringing patient perspectives into research.
Together, they left me thinking about what happens after we invite someone in.
Do they find connection? Does their experience carry weight? Can they help shape what comes next?
Those are questions worth carrying into our own work.
Every Sunday evening, I share three people whose posts give me something to think about in advocacy. Subscribe free to Advocacy at Work to receive the next edition in your inbox.