Getting Past the Old-Fashioned View of Patient Advocacy
April 16, 2024 | Leadership, Women in healthcare, healthcare
Patient advocacy organizations today are data-driven, doing amazing work — and have the hard evidence to support their impact on patient care. The challenge is getting past the perception of a group of people “bringing biscuits and cookies to the cancer clinic.”
To read Medscape’s White Paper on patient-centricity in oncology care in collaboration with Lorna Warwick, CEO of the Lymphoma Coalition.
“I never had that burning desire to be a CEO,” says Ann-Marie Baird, President of the patient advocacy organization Lung Cancer Europe. It still surprises her sometimes that she has the title, but she says she knows certain things about herself. “I’m a natural leader as in, if there’s a group and we can’t figure out where to go for dinner, I can take it for only so long. And then I’m like, ‘OK, this is what we’re doing!’” Baird naturally steps into that role, and says she’s grown within that framework at the patient organizations she’s worked with. “Each step wasn’t necessarily about a bigger title, but rather, how can I do more? I often struggled in certain roles because I didn’t have the power to make the decisions. So my thought was, ‘How do I change that when I’m looking at my next role?’”
In episode 4 of Medscape Education’s Women in Healthcare Leadership series, Baird is joined by Lorna Warwick, CEO of Lymphoma Coalition, a global network of roughly 90 patient advocacy organizations spanning 55 countries. They talk candidly about their different paths into patient advocacy, how they became healthcare leaders, the challenges they faced along the way, and how they overcame them. And they share advice and a few of the keys to their success. (Such as, never take anything personally, and don’t be afraid to reach out for help.)
Warwick says one of the reasons she’s a good fit for her job is because she “likes to learn,” and there’s been so much activity in the patient advocacy space that it provides her a lot of opportunities to keep exploring. Plus, she says, she’s “really good at looking at the data and having conversations with people and seeing overall what the issues are and how can we address them perhaps in a different way.”
Warwick and Baird both say that much of their work involves looking at data—which surprises most people outside of the advocacy world. One of their biggest leadership challenges is overcoming the lingering old-fashioned perception of patient organizations as a group of people sitting around a kitchen table figuring out how to bring biscuits and cookies into the cancer clinic. (Not that there’s anything wrong with cookies and biscuits, they agree.)
But when you have the data to back up your points, it’s so much easier to convince stakeholders—whether that’s pharma doing their drug development, or doctors treating patients in a clinic— that “this isn’t just something we’ve heard, it’s not just something I feel. But look, I have data, just like you have data on the efficacy of this medication, I have data on what this means to a patient and how they experience it. Let’s figure out how to close those things so we can give the patient the best experience,” Warwick says.
Amplifying the voice of the patient—their personal experiences, the issues they’re facing—and ensuring that their needs are addressed, is the beating heart of both organizations. “My mission is to try and translate that in such a way that it’s going to have the biggest impact,” says Baird. “So whether it’s patient-driven research, or talking to different stakeholders or policymakers, I see my mission, and advocacy, as being that bridge.”
Hosted by Victoria Harvey-Jones, Associate Director of Clinical Strategy at Medscape Oncology Global
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