Medical Innovation Exchange

More than our stories: The do’s and don’ts of engaging patient advocates

patient engagement

“So, tell me what happened to your mother,” she said. I get asked this question a lot since losing my mother to a Clostridioides difficile infection (CDI) in April 2010. Over the past eleven years, I have told her story to tens of thousands of people in a variety of settings, and documented it in several articles, op-eds, podcast, news stories and videos op-eds, podcasts, and videos.

Sometimes telling her story reinforces our deep love for each other, which makes me feel good. At, other times, I want to stick my head in a well and scream until I’m hoarse. Occasionally, it makes me feel flat and disconnected. And sometimes, it brings me right back to the white-hot rage that I felt in the months after she first died. But I still consider telling the story of who my mother was and what happened to her to be a sacred duty. In sharing the incomparable and unreconcilable loss my family experienced when my mother was killed by a preventable healthcare associated infection (HAI) at just 56-years-old, I seek to both honor her memory and her life’s work as an educator and to ensure that her death will not be in vain.

What follows is guidance that I have developed over more than a decade of telling my mother’s story as we build a movement to end preventable harm from CDI and other HAIs. We offer it to healthcare workers, hospital administrators, journalists, nonprofit leaders, government officials, industry leaders, and others who want to invite engage a patient safety advocate to share their story at an event, or to collaborate on a research or awareness project. People who have been harmed very often want to share their experience, both as catharsis and to help prevent others from being hurt.

But doing so can come at a cost. Reliving the brutal 36 hours from when I arrived to take my mother to the hospital to the ICU doctor telling us she had died is mentally and emotionally draining. So while we welcome the invitation, the following “DOs and DON’Ts” will help ensure that the experience is optimal for people like me.

Do your homework. Survivors of medical harm and their loved ones frequently recount our stories to raise awareness and advocate for change. If we’re established enough to be on your radar, it’s highly likely that our story is available online. Read it BEFORE you contact us. And do not ask us to “tell you what happened” during an initial conversation. Reliving the harm or loss we’ve suffered takes an emotional toll every time we do it. Respect that we have a right and duty to ourselves to share our stories only when it can have a tangible impact.

Don’t ask invasive questions (or let your audience do so). Telling our stories requires us to be very vulnerable. To both connect with our audiences and have the desired impact, we choose to share extremely personal aspects of our lives. That may include graphic details of the medical harm we’ve experienced, our emotional state during and after the harm, efforts we have made to heal ourselves such as therapy, psychiatric treatment or legal remedies. Unless specifically invited, questions related to those aspects of our lives should be avoided, as should questions about our families, marriages and children. The trauma of medical harm ripples through our families and friendships, so respect our privacy.

Don’t expect tears. I rarely cry when recounting the story of my mother’s death. I suspect that’s due to her not being a big crier and my being an experienced public speaker. I occasionally tear up and get a lump in my throat. But that’s usually it. I have and do still cry plenty in private.

Do be prepared for tears. Of course, I know many patient advocates who cry every time they tell their story. Some do it very openly with a lot of calm. Some do it with a barely contained anger. Some sob and some just let tears fall. Some do it unexpectedly even to themselves. Whatever way it happens, you should be prepared to offer tissues, water, and allow us a moment to compose ourselves before continuing.

Don’t ask us to layout money for transportation or lodging. More than one-third of American families do not have $1,000 in savings for an emergency. People who experience a chronic illness, terrible injury or medically related harm, are less likely to have any savings. Many have lost some or all their income. A portion will be living on disability and Social Security payments. Most of us cannot afford to lay out the money for a plane ticket, hotel room and other travel-related costs.

Do pay us. I presented at professional associations and quality improvement meetings for five years before asking to be paid. At the time, I was working full time while also running Peggy Lillis Foundation, in memory of my mother, so I didn’t “need” the money. But every hour I spend preparing, traveling to or delivering a presentation was time away from fundraising for PLF or implementing our programs. That revenue has to be made up. Even if your speaker doesn’t have an organization to run, the time it takes to craft and deliver a presentation deserves compensation.

Other reasons to compensate patient advocates include:

  • Diversity. Medical harm affects Americans from all demographics, but the structural impediments of racism, sexism and classism mean that patient advocacy is mostly filled with college-educated white people from the professional class. Compensating speakers would go a long way toward ensuring that people from marginalized communities – who struggle to access care and are more likely to be harmed – are able to share their experiences and shape the discourse around patient safety.
  • Disparate benefits. Patient advocates do not benefit from continuing medical education credits or resume building that serves as compensation for many speakers. Those intangible benefits – free conference participation, etc.- can serve as material compensation for healthcare workers but not for us.
  • Economic justice. Americans spend $3.6 trillion on healthcare, yet we receive less and poorer care than other Western post-industrial nations. Further, if we experience medical harm, our most likely course of redress is a civil lawsuit. And most lawsuits brought against physicians and hospitals are found in favor of the defendant. The average legal settlement for medically-related wrongful death is just under $350,000. Worse, so-called “tort reform” has made is incredibly difficult to even bring a suit in many states as caps on damages mean fewer attorneys will take a case on contingency.

Don’t reduce us to our story. Patient advocates have a lot more to offer than just our stories. We come from all walks of life, bringing diverse perspectives, skills and knowledge. In my time as a patient advocate, I have met HVAC experts, nurses, chemists, data infrastructure experts, x-ray technicians, pharmacists, schoolteachers, law professors, hair stylists, and people from countless other professions. Beyond the knowledge we have at the time of our loss, injury or diagnosis, patient advocates are often self-taught experts on their illness, healthcare policy, regulatory issues, peer support and navigating the healthcare system. We bring a wide range of policy, technical and lived experience that can inform every aspect of healthcare. Not every patient advocate can or wants to engage more deeply than sharing their story, but we should never be reduced to that.

Albert Einstein said, “We cannot solve our problems with the same level of thinking that created them.” Patients and family members have a critical role to play in articulating the dangerous gaps and blind spots in our healthcare system as well as developing solutions. To be effective, we need for healthcare leaders to engage with us as far more than our stories.

Photo: mathisworks, Getty Images

Christian John Lillis

Leave a Comment

Your email address will not be published. Required fields are marked *

Leave the field below empty!