This episode of the DiepCJourney Podcast recorded in December of 2024 is a discussion across continents with two women leaders I admire who engage in patient advocacy and the patient story. I invite you to listen to the podcast embedded in this blog. Together we produced the title, “The Gift of Patient Advocacy Wisdom.” What a gift for me to sit with these two amazing women, Marie Ennis O’Connor and Sue Robins.
What Does Patient Advocacy Look Like?
Patient advocacy at its very core is giving voice to patients, no matter what healthcare diagnosis or treatment they are facing. “Voice” can take the form of speaking engagements at conferences, writing blogs, consulting, nonprofit work, making policy changes, and much more. All forms of patient advocacy begin with a story.
Patient advocacy is also demanding work. To be effective one must commit to this. It means long hours of navigating a healthcare system no matter what country you live in. Finding leaders and decision makers within a healthcare system that want to listen to the patient story is important. Let’s face it, some are not interested. As we discuss in the podcast, some seek a patient story via an advocate to tick a box. All three of us have experienced this in one form or another. We dive into individual experiences both good and bad in the interview.
The Wisdom of Marie
I had the absolute pleasure to meet Marie in person in her home country of Ireland in the fall of 2023. The effort she made to bring herself to the hotel my husband and I were staying at was remarkable. Marie came later in the evening, got stuck in some not so pleasant Dublin traffic, and then had to drive home that evening after we met. It was our last night in Ireland and my heart was full of gratitude for the effort she made. I shall never forget it!
We are fortunate to have her in the patient advocacy space. I continue to learn from her LinkedIn post and it is an honor to share space with other bloggers on the Weekly Roundup. Marie describes her Journey to patient advocacy as a “pinch me moment” with a diagnosis of breast cancer over twenty years ago. Talk about commitment! This quote from Marie sums up the wisdom she continues to share with us.
We find when we are diagnosed with a serious illness, something is missing. We look around and see who can fix this. I discovered the person who could fix it was me. ~ Marie Ennis O’Connor
The Wisdom of Sue
Hello Canadian neighbor who I am determined to meet some day! Sue visited my hometown of Seattle in 2024. We discuss a future meeting at a lovely coffeeshop in Seattle so that I can say I have met both women in person. What a treat for me! I think I know just the spot, Sue. I’ll leave the invitation open and look forward to it soon. We are, as you stated, “So cool that we are so international, the three of us. But we also have so much in common.”
Sue’s patient experience started with a breast cancer diagnosis seven years ago. Her son, Erin, born with down syndrome, is now twenty-one years old. This was the start of her healthcare advocacy Journey when Erin was about two years old. She speaks about her advocacy work and describes it as a roller coaster realizing progress doesn’t always go up. Imagine the commitment this takes on Sue’s part to forge ahead with her advocacy facing those ups and downs, changes, and evolutions of healthcare in her home country of Canada. A quote from Sue that is worth sharing here.
I have been doing this for twenty years. I’m tired, but, we also have lots of wisdom if we’ve been around for this long. ~ Sue Robins
Sit With Us for Our Chat on the Gift of Patient Advocacy Wisdom
I cannot do this interview justice in words. It is worth sitting with us and listening to our conversation. We are filled with nostalgic hope of meeting in person some day in Ireland, Marie’s home country, on the Wild Atlantic Way, the western side of Ireland. Join us for this chat and please do leave us a comment and let us know your thoughts or your own advocacy experience.