If you have been reading the blog or following my online activity in the last week, it would be hard for you to have missed the fact that I participated in the Partnership WITH Patients Summit last week. And the reason “with” is capitalized is that this summit was truly focused on making the patient voice a central one in the discussion of how to fix our healthcare system. The Summit was inspiring and powerful–leaving me speechless more than once. But it also included a reminder that nothing changes if we don’t participate in building the change. So, my next few posts will be reflections on the major themes that I heard last weekend. They are also an invitation to you–to consider howyou can be part of the change.
This story wasn’t even part of the official Summit, but it had a powerful impact on me. After a twelve-hour day on Saturday, many of us gathered to enjoy one another’s company and to synthesize the day. I was sitting with a passionate nurse/entrepreneur who is part of a really great company (more about that in another post). She was talking about her initial reaction to the internet as a tool for patients and health care providers. She was clear about her initial skepticism:
I am a clinician, and a researcher. I have always searched for the evidence, and I wanted the patients that I came into contact with to have the most accurate information possible. I was concerned that patients would not be good educators of other patients. That patient communities would consist of people giving medical advice based on their own experience instead of training and research. That patients would misinform other patients.
But then I was diagnosed–and became a patient. And I began to visit patient communities and just read. What I noticed was that people weren’t giving medical advice. They were telling the stories of their own experiences. And I realized: You can’t be wrong about your own experience.
And when I had to make a treatment decision for my own care, in the end, I didn’t make a decision because of something I had read in PubMed. I made a decision based on the stories and experiences of other patients–because they had knowledge of living with this diagnosis.
This story–and so many others this weekend–affirmed for me the need for patient and caregiver voices in our healthcare conversations. When you are on the inside, you have a lived experience that is as important to explore as the medical data. So, if you are a patient or a caregiver reading this blog today, please think about how you might be willing to share your story. Could you write a blog (or a guest post)? Could you find an online community forum and share your experience? Could you be part of a group that meets with legislators or other decision makers to share your voice?
Your voice, your story and your experience matter. They are part of what will help us learn to do better healthcare. If you’re interested in sharing your story, please contact me and I will be happy to help you find a channel to do so.