Tell us a little about your background:
I am the daughter of a Navy fighter jock who was the son of a ditch-digger. The ditch-digger’s father escaped Ireland in the Great Famine, fought for the Union, was wounded at the Battle of Selma, and never learned to read.
I am the granddaughter of the Admiral who was the son of a steel-worker, the descendant of Scots-Irish coal miners who crawled from the pits and sought a better life in a new world.
I come from warriors.
I watched my mother and her brothers rally to rescue my grandmother from the avuncular family doctor who had prescribed 50 different medications for her. I watched them fire a doctor, I watched my grandmother live many more years.
I watched my mother struggle with headaches and visual disturbances over ten years, as a series of doctors — all male — patted her on the head and told her “it’s just menopause, dear.” I listened as she told me of the diagnosis — finally, by a female physician — of a pituitary adenoma the size of a tennis ball. I watched her deal with brain surgery, and recovery.
I watched my father manage a Parkinson’s diagnosis, and live 17 years as an active e-patient. I also watched him be crippled by a botched hip replacement.
I stood with them as their advocate, then became their caregiver. They died 29 days apart at the end of 2002.
I got cancer for Christmas in 2007. I took all my parents had taught me, and put it to work on my own behalf. I wrote a book about managing medical care. I became a global voice for patient empowerment, open science, and participatory medicine.
What led you to advocacy?
Beyond everything I learned in the situations I just mentioned, as a longtime journalist (network TV news, field engineer and then field producer), I’ve always been a curious cat. That curiosity spurs me to ask questions, and then share the answers in a way that might illuminate the understanding of a topic for others.
I’m an advocate because I’m a reporter. Advocacy is tribal knowledge sharing. Lather, rinse, repeat. They’ll have to drag me off the battlefield on my shield. I’m in this for life.
What is one thing you are most proud of as a result of your advocacy?
Every time someone says my book, or something else I wrote, helped them navigate their own care or caregiving journey. I’ve actually lost count of how many times that’s happened in the last eight years, but it’s well into the multiple dozens at this point.
On the close-magic front, I field queries regularly from people looking for ways to cut through the crap on getting to a better clinical team, to figure out how to find out what something in healthcare costs; how to get help battling for payment for the medical care they/their families need. I’m a resource connector — my history as a journo means I’m a lifelong source collector. Connecting those sources with people who need what they have or know is kinda my purpose in life.
What does patient engagement mean to you and why?
Engagement is AGENCY. That the PERSON is the driver of health decisions, not the system (policy) or the provider (clinician or facility) or the payer (insurer or CMS). To that end, I write constantly about health literacy topics, in order to make sure that people can fully participate in decisions about their care.
What about patient-centricity?
Because they’ve become marketing buzz-phrases, “patient-centricity” and “patient-centered” have also become pretty meaningless, in my opinion. If healthcare is not centered on the patient, what is it even doing? Terms like “patient-centered” have become the very avatar of why our U.S. healthcare system is so deeply broken: The system that is supposed to be delivering on a promise of best health for all has to be reminded that the people they’re tasked with caring for are…people. The system’s current status quo casts patients as revenue units. That thinking has got to change. And that’s why I’m here — to drive that change.
What does science mean to you?
Curiosity. Exploration. Discovery. From the N-of-1, self-hack and track level (oh, look — when I drink coffee after 3 p.m., my heart rate’s messed up!) to the multisite Phase IV clinical surveillance of in-use formulary, with all sorts of a-ha moments in labs and work sites everywhere — that’s science.
What’s your favorite scientific discovery and why?
Tie: the polio vaccine and the discovery of chemical pathways to combat HIV. Both have personally affected my life, and my family’s, in positive ways.
What’s the connection from science to medicine for you?
Human curiosity about the human body leading to human discovery is my fast take on human medical research.
What is the most important issue to you regarding the future of scientific research?
Funding. Belief in the basic truths revealed by science. Seriously, we’re in a very dangerous landscape right now, with both pervasive science denial and the “data parasite” controversy that ensued after the New England Journal of Medicine published an editorial that essentially said that researchers shouldn’t have to share the datasets created by their research, putting paid to any idea that wider knowledge or use might be possible from that data. In other words, no scientist (or journalist, or whomever) should have access to data produced by another scientist’s work. This guarantees a money-medicine mindset, and also handcuffs accelerated discovery. All of this is why I focus on building health and science literacy in my own work.
If you could initiate clinical research into one thing what would it be and why?
A tie: ending Parkinson’s disease, and making cancer as easy to deal with as a head cold.
How would you feel about being able to join a clinical trial and participate in research from your home?
I’m already doing that via self-hacking (using mobile apps and tools), although I haven’t been able to contribute that data anywhere…yet. I’m an enthusiastic Citizen Science member and track projects on SciStarter for opportunities to participate in science of all sorts. My mom was a chemistry and math whiz, always fascinated by the latest breakthroughs, and she approached cooking as science (which it is), so “stand back, I’m trying science!” is kinda base-pair DNA for me.
This story has been edited for length and clarity.