For the Fanconi Cancer Foundation (FCF), centering the voices of people with Fanconi anemia (FA) is an organization-wide commitment. A few years ago, they set out to build a formal advocacy program that did just that, while amplifying patient voices in a powerful and sustainable way. We spoke with Advocacy and Engagement Manager Andrea Ronan about the process of building the program and FCF’s multi-year work with Living Proof Advocacy.
Photo credits: The Fanconi Cancer Foundation
How did the FCF patient advocacy program come about?
The program was about two years in the planning. One of our core initiatives at FCF is to make everything patient-centered. We want the individuals with FA, their care partners and families involved in every part of our mission. That means research, clinical trials, legislation and advocacy, ensuring that their needs and voices are always heard.
Patient-centered care and patient-centered research has been an important concept for the past 20 years, but in the past 10, it's become accepted as what should be the gold standard.
Andrea Ronan
That’s what we wanted for a formal advocacy program as well. Plus, we felt very strongly that advocates should be compensated for their time.
We also knew that we wanted to provide training on telling personal stories and doing speaking engagements. I dug through a lot of resources and talked to other organizations and that’s how I found Living Proof Advocacy (LPA). After our initial meeting with LPA, it was very clear that we were a good match. We also got amazing feedback from organizations that had worked with LPA.
So we made a plan and then took it to the board. It was well received and now, as they see it in action and hear feedback from researchers and people who have used the program, they have even more confidence in the program.
What kinds of things were you finding out from other organizations when you were doing your research?
We couldn't find anyone that was doing exactly what we wanted to do. A lot of people had speakers bureaus or large groups of advocates. But, as far as I could tell, nobody was actually compensating their advocates. Also, many were larger organizations with one person whose only job is to run the advocacy program. But we’re a small nonprofit with only a staff of 12. The advocacy program is not my only job; I oversee many programs. So in our case, we had to work smarter, not harder. We knew we needed to pull in some resources.
I think that's why LPA’s multi-year support was so perfect for us. They got us started and now we are self-sufficient and moving forward. The first year, LPA did the fundamentals training for our advocates; this year we did the training on our own.
How did that go?
Ana Tabar, also an LPA-certified coach/advocate, on the FCF website.
We were a little nervous since it was our first time, but it was very well received. The LPA resources were invaluable. I now have all the little techniques, I know what to listen for, like when an advocate needs to point to the positive.
There also was an LPA coaching refresher scheduled a week before our program began, and it happened right at the perfect time and was just perfect preparation for our program. I watched the recording of that call and took notes the whole time. It was extremely helpful.
What’s the impact you’re seeing on your advocates and the program?
Especially in the workshops with the advocates, there are definitely some “A-ha moments.” when they are telling their stories. As a coach, I have the chance to say, “Coming to you from the listener’s perspective, this is what I heard.” And they're like, “Oh, I didn't even think of that.” It makes them think differently and focus on their call to action.
We've had a few of our advocates go on to do legislative advocacy. One has spoken at conferences and with pharma companies. She said to me just a couple of months ago that she probably would never have done this if she hadn't gone through the training. She didn't have the confidence before.
I think that people who go through the program are just more thoughtful about their advocacy. I can see the change in the advocates week to week as they're getting and hearing the feedback.
But for us as an organization, the major thing is sustainability. We have five certified coaches who were trained by LPA, and as time goes on, we’ll be able to train additional coaches ourselves. As opposed to a one-time thing, the multi-year contract enables us to have continuity.
Also, the multi-year support has enabled us to expand our partnership with LPA. This year, since we're training the advocates ourselves, LPA is available to do advocacy training for our board members.
Moving forward, what are your goals for your patient advocacy program?
We want to expand our presence in research and have advocates involved in the research process from the very beginning. This year at our annual conference, we’ll be integrating advocates in several different ways to market the program.
Legislative issues are hot right now, too. We're looking into creating some advocacy toolkits for the general community beyond just the advocates so that we can help more people feel more empowered to make change in that way, too.