Patient advocacy isn’t for the faint of heart.
It can be intimidating to stand up and give a speech in a roomful of doctors, politicians and cost-cutting health economists. They know the jargon. They’ve spent years studying medicine. And they have no clue what it means to be a patient.
Remember – that’s exactly why we must speak up — to bring the patient voice to every conversation about health care. We’re there because we are the experts in what it means to be a patient. We have value. Our experiences matter. Our voices must be heard.
Decisions affecting patient access to care will be made –whether we speak up or remain silent.
Last month, I spoke up at the public forum of the New England Comparative Effectiveness Public Advisory Council’s review of medications for rheumatoid arthritis. As a review panel for the Institute for Clinical and Economic Review, New England CEPAC’s assessment will have a direct impact on which RA treatments insurance companies cover. I spoke because I want to ensure that I continue to have access to the right RA treatment recommended by my doctor and not an accountant.
We need your patient voice, too. On April 28th, ICER will release their draft evidence report for osteoporosis. In May, they will be releasing draft evidence reports on abuse-deterrent opioids and holding a summit on the Orphan Drug Act. If you’re a patient that is impacted by those issues, it’s a great opportunity to speak up.
If the idea of sharing your patient story publicly makes you nervous, here are a few helpful tips to prepare for your next speech.
Speech Prep: Research the Event in Advance & Tailor Your Story for Each Audience
My patient advocacy has led me to speak to a wide variety of groups with varying interests and levels of expertise. I’ve spoken to parents of children with juvenile arthritis, testified before the Massachusetts Joint Committee on Public Health, and spoken to a roomful of biomedical researchers. While my patient story remains the same, the goal of these events differs greatly as does the amount of time I have.
Prepare by researching the event in advance. Identify the audience: who are the attendees? How much do they know about my disease community? What part of the patient experience are they missing?
For example, when I’m speaking to organizations, like ICER, that are focused on dollars and data – I focus on all the ways my life has value that can’t be quantified in a spreadsheet. That’s what they’re missing: the unquantifiable value of every patient’s life. ICER’s economists need to be reminded that there is “value” in improving my quality of life.
Practice. Practice. Practice.
Practicing your speech sounds like a no-brainer, but it’s critical when you’re speaking at an event where you’ll on the clock. If I know that I only have three minutes to speak, I make sure that my speech comes in at 2:45. I want to provide myself with a buffer in case I trip up. I practiced my speech for ICER so much, that I was able to look up and make eye contact for most of it which are very impactful.
No matter how many speeches I’ve given, there are still parts of my story that can be a little emotional to share. Practicing those parts helps me to slow my cadence down, take a deep breath, and get through those parts of my speech without losing my composure.
Be Confident: You are an Expert in the Patient Experience
As patients, we often defer to the medical experts. And while doctors and scientists might have more knowledge about medical terms, they don’t know what it means to be a patient. We patients are the experts. The reality is, I’ve been living with rheumatoid arthritis for more than 22 years – that’s longer than many of my doctors have been practicing medicine!
Still lacking confidence? A 2017 study published in JAMA Surgery found that patient assessments were an effective method for identifying the worst performing surgeons. In fact, listening to patient feedback could avoid 350,000 surgical complications and save $3 billion per year. “Patients and their families are uniquely positioned to observe physician behavior and performance,” said the study’s lead author, Dr. William Cooper of Vanderbilt University’s Center for Patient and Professional Advocacy.
One more thing: sometimes the experts aren’t as knowledgeable as you’d think. At a recent patient advocacy event, I shared my story with a young rheumatology fellow. I told her that one the first treatments for my SJIA was gold sodium thiomalate injections. She immediately asked, “What’s that?” Whether it’s treatments, side effects, or insurance protocols, patients have an enormous amount of expertise to contribute to conversations about access to treatments.
Don’t Be Afraid to Get Personal
When I first started speaking at different events, I was always afraid to get too personal. I found it difficult to open up to perfect strangers. I also had encountered other speakers who I found too overwrought – maudlin even. So I tried to share my experiences at the highest level and focus on whatever the purpose was for my talk. Over time, I found that insincere and inauthentic. I was holding back from being real about how my disease affects my life every single day.
Recently, when speaking to ICER, I talked about how my current treatment has stabilized my health to the point that I’ve been able to think about having a family. I don’t think there’s anything more personal than that. They needed to hear it. Groups like ICER need to understand that a family isn’t possible without access to my medications.
Connect with Your Fellow Advocates
Whenever I commit to speaking at an event, I always ask, “Who are the other patients?” From there, I’ll check out their blogs and connect with them via social media before the event. It never fails to amaze me the strong bonds that I’ve formed with other patients online – some of whom I’ve still never met in person! It always helps calm my nerves to see a familiar face, or even steal a hug before I speak.
We may not all share the same diagnosis, but our patient journeys are often similar. We are stronger together. We have power when we speak with one patient voice.
About the Author: Anna Legassie
Anna is a patient advocate, writer, and athlete living with Rheumatoid Arthritis (RA), Pericarditis, and multiple joint surgeries – including bilateral hip replacements. She works in management consulting and has leveraged her professional experience to serve as a patient adviser to health startups, pharmaceutical companies, and other health organizations. Anna lives in Boston with her partner and their rescued chocolate lab, Penny, where she enjoys the local food scene, training for her next race, yoga, and cooking. You can read more about Anna’s patient journey on her blog Six Hips and Counting.
