This is Dave’s story, not only of surviving stage-IV cancer, but of the birth of a cancer survivor now focused on opening the world’s eyes to what is being called “participatory medicine”. Patients who are—Empowered, Engaged, Equipped, Enabled, Educated—acting as effective partners with their clinicians.
“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”
-Society for Participatory Medicine, April 2010
Seven Life or Death Lessons from e-Patient Dave’s story:
- Lesson 1: It’s up to each one of us. We have a choice. It’s our responsibility to know and accept a certain measure of responsibility for our individual recovery from disease and disability…
- Lesson 2: When your instincts say to scram, scam. Or if your doctor thinks your feelings are your problem, you might want to find someone else — Net, It’s worth traveling far to find a doctor you work well with— We are each responsible for our choice of doctors. Make it a conscious decision.
- Lesson 3: Laugh, Sing and Eat Like a Pig. “No matter what your situation, no matter what your outcome…be fully alive for every moment you live” — Laugh, sing and eat like a pig…for real!
- Lesson 4: Keep thinking and keep asking questions. It behooves patients and their advocates to scour the web looking for new findings that haven’t made it to us yet—avoid “the lethal lag time”. Would you do it for your child? Then do it for yourself.
- Lesson 5: Hope is essential. Statistics apply to POPULATIONS, and they don’t tell you a thing about YOUR outcome. While it may be helpful to understand your reality, it’s wise not to let statistics self-limit, or completely shut down hope.
- Lesson 6: “Knowledge is symmetry”—the new reality that patients can bring legitimate information to the table that the physician might not have seen or might find useful. Many overestimate the hazards of imperfect online health information—While there is a lot of garbage out there…in the process, we learn to find trusted resources.
- Lesson 7: Re: the game of life: “must be present to win.” “No matter where you are in your journey, choose to be present in the moment, clear about your choices, and the master of your attitude.” — e-Patient Dave.
Upon reflection,three words squarely hit you over the head: personal responsibility, positive attitude, and hope.
When my first son was born, my mom came to visit only to find herself in bed on day three with a bad case of shingles…suggesting a compromised immune system…which led to a diagnosis of a deadly endometrial cancer that she was told meant she had virtually zero ‘percent’ of survival. Happily, it’s fourteen years later, and she not only escaped that cancer, but went on to escape a deadly brain tumor the size of a plum growing right behind her eye. Throughout both scares, like Dave, she showed us what it meant to never lose hope and never lose her unwavering will to live.
To patients: We all have a choice and the responsibility to actively manage our health. While these seven lessons can’t guarantee success, they sure can help produce better results. Increasingly, the evidence points to greater success for those who act decisive, consistent,and maintain hope and a positive attitude.
To doctors: these seven lessons are a view into the way patients will increasingly want and expect to interact with their healthcare providers/teams. Dave’s journey provides a view into the benefits and what it means to genuinely educate, support and partner with your patients.
To hospitals: provide patients and their families with on-going support, education and compassion. Might you provide individual test results real time with a platform for open,on-going communication and learning between patient, physician and integrated team?
To healthcare marketers: provide patients and their families with hope, encouragement and learning with each and every interaction, and they are sure to appreciate and reward your brand, and live longer… asking patients for their input will go a long way.
With cancer rates what they are today, this book is a strong reminder that we all have a choice and the responsibility to actively manage our health….To anyone facing cancer now, here’s to your amazing grace and fortitude….and here’s to PARTICIPATORY MEDICINE to help educate and guide us all!
Thank you e-Patient Dave for sharing your story and vision!
Pick up Dave’s story. And why not check out the Society for Participatory Medicine. For more insights on the e-Patient movement and an inspiring short video created by e-Patient Dave in conjunction with Kru Research, visit Eileen O’Brien’s post: e-Patients: Educated. Engaged. Empowered.