This week is our fourth anniversary! I have never done anything voluntarily for that long. (School, work, and patient-hood are not voluntary.) Usually, I quit when I get bored, and I get bored very easily. The funny thing is, even though that’s over 200 posts, there’s still a lot to explore. The healthcare space is so much bigger than I had imagined. I guess before the blog, I was living in a patient bubble. I have fairly deep knowledge about the things that involve me directly, but I have learned a lot more through the people I’ve been lucky enough to meet since I started. It occurs to me that you might also be living in a patient bubble – it’s hard to broaden your view if a) you don’t know a broader perspective exists, and b) you use all of your time and energy on family, career, and condition(s). For our anniversary, I would like to share two of the areas I have learned about that are making a point of incorporating the patient voice.
One of the first areas I dropped myself into as a patient advocate was health IT. I went to a conference where I learned about OpenNotes’ global push to help patients get access to their own medical records without having to pay a small fortune. Which is ridiculous. Our bodies, our notes. I also went to the lobby where vendors introduced their new products and programs. There were health trackers, online peer support networks, and reps from government and industry looking to make their digital presences easier to navigate. Now, most tech is Greek to me (slightly ironic since I worked for IT management companies for 14 years), and there were few patients in attendance, at least in their capacity as patients, but it was encouraging to see both the host, Academy Health, and so many diverse entities at least trying, even if it wasn’t completely altruistic.
More recently, I have discovered that there is a community of organizations that collect patient stories. In fact, inside many of the patient advocacy organizations, grassroots does not necessarily mean making fundraising calls, but patient outreach and story collection. There are many reasons for this: peer support, influence for federal research funds allocation (the disease-centric orgs), improving medical education, and making more patient-friendly policy recommendations. The way I see it, the more patients telling their stories, the better. Each story makes all of us feel less alone, raises awareness, and the stories serve as a reminder to everyone in the healthcare space (including us) that we are the clients, the consumers, the ones on whom the policies and funds are focused
A lot has happened in four years. As a country, things have gone from bad to worse to better, although better hasn’t come yet for many of us high-risk folks even though we are in a priority group. On a personal level, I have learned a lot – about myself, about other patients and their journeys, about the healthcare ecosystem and all of the moving parts we see and don’t see. I’m sure there’s a ton I still don’t know, and as I move forward into year five, I hope to continue learning. As I do, I promise to share.
Thanks for reading so far!