In September I wrote a guest post called "A Day In The Life" that appeared on HealthiVibe. Jeri Burtchell is doing a series of patient stories and has branched out to include chronic disease beyond her own. That's easier for me to understand now than it would have been a few years ago.
One thing I have noticed during tweet chats with patients is that people with ongoing health problems have a lot in common. Whether it is finding information, planning doctor visits, developing a website to help others, or just advocating for being included in decision making in healthcare, the disease doesn't matter as much as common issues about which we are passionate. Many topics that I instantly dismissed as not relevant to me have led to useful discussions and new friends.
In ovarian cancer, lung cancer, rare disease, diabetes or being a caregiver, I have found in all of these topics there are more similarities than differences. That may be part of the reason that the ePatients at Stanford Medicine X became a strong community so quickly, often greeting one another as if we were long lost friends rather than strangers.
Recently I came across a new issue that concerned me and where advocating passionately for myself in person had no effect on "the policy." When I was back in my natural habitat (in front of my computer) I realized the obvious - patients on social media are no longer alone. When I tweeted about my issue I found others across the country who felt the same and also agreed that we needed to work for change. The issue is now an area of discussion with policy makers. We hope positive results will come from our meeting.
Including the patient voice in healthcare decision making can have impressive results, as I found out during the IDEO Design Challenge. Maybe it is time for a new sign.
Graphic by Lucien Engelen
Here are some links to Patients Included blog posts
One by Susannah Fox
And Leslie Kernisan
And I'll end with a quote from ePatient Dave speaking to a conference organizer:
"I say this: want to know if you have Patients Included? Ask this: “Are there any actual sick people in the room?”