What is a ‘Patient Leader’?

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What is a ‘Patient Leader’? 1

We all have physical and mental health. Which means at some point in our lives, we’ve probably found ourselves in a doctor’s office waiting for our own or our loved one’s name to be called. And whether you identify as a “patient” or not, you or someone close to you likely fits the definition of one: a person who has received medical treatment or care.

But what happens when symptoms persist or come on suddenly? Where do you turn when you receive a life-altering diagnosis? And when faced with health challenges, how do you navigate what it is that you or your loved one are going through — from day-to-day life to understanding medical jargon?

There is a small subset of the patient and caregiver population who have chosen to be the person they needed when they were asking themselves these same questions. We call these individuals patient leaders.

You may also know them as health activists, patient advocates, or patient influencers. But whatever you choose to call these people, their impact stretches far and wide — from online to in-person, across the globe and beyond a singular disease.

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Here’s how patient leaders make a difference for all patients and caregivers:

1. By sharing their story

Individuals often unknowingly embark upon the path to patient leadership by simply having the courage to talk about their health experiences. Fibromyalgia patient leader Rachel says, “When I was diagnosed, I took it really badly and was grieving for the ‘life I lost.’ But through sharing my story on social media and joining this incredible community, it has taught me that there is so much I can still do and that my life is far from over.”

Their candor and courage often inspire others to speak up as well.

Multiple myeloma patient leader Thomas explains, “I use my platform and story to encourage others. My diagnosis allowed me the opportunity to meet other survivors and caregivers that I admire and continue to learn from.”

Narratives are what connect us as human beings — and in the online health space, they are what lead people to official diagnoses, new friends who “just get it,” and newfound hope.

2. By raising awareness

Sharing our stories can be one way to raise awareness — talking about the realities of living with a health condition or disability can reduce stigma or educate the general public. But many patient leaders take it a step further.

Fibrodysplasia ossificans progressiva (FOP) patient leader Joey says, “My hope is that if I can teach you just a few things about FOP, you might throw your support behind patients like me and research that can make the difference between us surviving and maybe even one day, improving.”

Patient leaders such as Joey are often fundraising for disease research, collaborating with nonprofit organizations, or working with representatives and lawmakers to pass legislation. They’re rallying everyone — whether they’re impacted by the same disease or not — to stand alongside one another and ignite true change.

3. By informing and educating

IBD patient leader Laura Scaviola explains, “A patient leader is a knowledge expert on their condition and is someone who advocates for their community to have better access to resources and information about their illness.” As champions of their health communities, patient leaders often take it upon themselves to not only stay informed by keeping a close eye on the latest news and research, but they then pass those findings along to others.

In fact, a recent study showed that patient leaders consume 93% more health information, and 89% of patients are likely to talk to their doctor about the information a patient leader has shared. In light of their influence, breast cancer patient leader Grace expresses how patient leaders recognize that each health experience is different and what works for one person might not work for another: “I’m committed to helping my community access resources and information, but at no time do I make decisions about specific treatment choices, provide clinical opinions, or perform medical care.”

Education expands beyond simply those impacted by similar illnesses. Chronic illness patient leader Kate Mitchell describes her role as “advocating for other patients, educating patients and non-patients, and helping all.”

4. By fostering community

Awareness and information are only two pieces of the health advocacy puzzle. Cultivating community and connection is arguably one of the most important facets of patient leadership. And if you’ve ever felt alone or misunderstood, you may know how powerful it is to finally receive support from someone who has stood in your shoes.

Chronic Lymphocytic Leukemia patient leader Jeff describes why he has spent time and energy cultivating an 8,500 member online cancer community: “‘You are not alone’ takes on a new meaning when folks see that there are others just like them.”

Even if someone doesn’t feel ready to speak up or advocate for themselves, Myasthenia gravis patient leader Tasha illuminates how patient leaders often act as the voice for many, stating, “We stand in the gap for a community we share a significant piece with. We work hard to make sure those who aren’t heard put their footprint in the world.”

Cultivating supportive communities often reaches far beyond one illness or disability. Parkinson’s Disease (PD) patient leader Michael says, “I want to give others, especially those in underrepresented communities, a home for their voice to be heard.”

Whether someone’s health community includes 50 people or 10,000 people, developing connections with empathetic and supportive individuals are often what gets patients and caregivers through long pain days, difficult medical decisions, stretches of time waiting for test results, and more.

5. By collaborating with healthcare

With so much knowledge and understanding of the patient experience — for themselves and on behalf of their communities — patient leaders have innate expertise that can bridge gaps in healthcare and ultimately develop more patient-centered solutions.

Lupus patient leader Estela Mata shares why patient leaders should have a seat at the table: “Patients should be part of the conversation because we are equal stakeholders. Without the patient, there is no patient care.”

At the end of the day, patient leaders want to help others. They recognize the need for effective treatment, research, care, and collaboration. Rare disease patient leader Jennifer Champy says, “Partnering with patients is powerful because it brings change, empowerment on both sides, and together, real solutions can be found.”

ITP patient leader Anthony Heard puts it simply, ”Patient leaders inform, inspire, educate and support.” Oftentimes, individuals don’t even know they’re a patient leader until months or years of advocating on behalf of themself or someone else. But whether they realize it yet or not, they are often called to do the work. Multiple sclerosis patient leader Cathy Chester remarks, “Being an advocate isn’t just what I do, it’s who I am.”

From responding to 100s of DMs to weighing in on clinical trial design, leading support groups to providing input into pharmaceutical marketing materials, patient leaders are a force of change and camaraderie in the health space. When we listen to what they have to say and give them opportunities to share their wisdom, Hidradenitis Suppurativa patient leader Michaela Parnell says, “We can unite in solidarity using our lived experiences and knowledge of our health conditions to empower others.”