Twice this summer, I have seen two works of art from The Walking Gallery at very business-centric health conferences where there were no patient panels.
That is the point, of course, as the woman behind the gallery will tell you. Regina Holliday describes the inspiration behind her work:
“Five jackets. They bring the patient into the room and onto the panel, when no patient was invited to attend. They remind me of the encaustic mummy paintings from 1st century C.E. found in Egypt. These amazingly real and poignant faces stare out above dried sinew, wrappings and bone. Their eyes sear our souls and remind us, ‘I was once one of you who lived and played, who laughed and loved before I met this fate.’ They transcend the dust and the darkness of the ages, and make the lives lost long ago so very real. The jackets worn by these brave few do the same for data and pie charts and graphs.
When you sit in an audience listening to a powerpoint presentation, and the faces on these jackets stare back at you, it changes things. It adds an edgy sense of reality to dry recitation of data. It wakes you up.”
I knew about the gallery because Holliday is based in Washington, D.C., where I used to work for a Web site that creates online communities for people living with serious conditions like breast cancer and rheumatoid arthritis. HealthCentral’s raison d’etre is to provide a place where patients can learn from each other and learn how to speak up at the doctor’s office, which makes it a perfect fit with the gallery.
I had never seen a jacket live and in person, though, so when I saw a man wearing one at the Digital Health Summit, I introduced myself and asked him what the scarab and phoenix on his jacket meant (there are no color-coded ribbons on the jacket). Gregg Masters explained that the painting represented recovery from depression.
I didn’t have a chance to talk to the man at CONVERGE, and there were no patient-centric panels, or even patients on a panel. No one likes to be talked about in the third person and starting sentences with “What people with diabetes really need is …” or “If overweight people really understood the cost of obesity …” almost guarantees that the target audience will tune you out, and rightly so.
However, I have been hearing many nonpatients speak up in these settings. Richard Russo, a panelist in the medtech session, will tell you a story about how a new-at-the-time medical device helped save his infant daughter’s life. Kem Hawkins’ fury at the U.S. Food and Drug Administration was genuinely motivated by the fact that bureaucratic delay will keep important devices from helping patients.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
This is not as good as having a person on the panel who has a medical device implanted in his body, of course. And I still hear, “Patients wouldn’t understand their EMR data if we did share it with them.” In these conversations, I do always bring up the fact that the patient owns the data and should control it.
I’ll keep saying that and as I said to a fellow CONVERGE attendee, we’ll have more patient representation at next year’s event, maybe a panel of patients to judge the design and usefulness of mobile apps.
In the mean time, Holliday is always looking for more people and jackets to join the gallery. Follow her on Twitter or get in touch via Facebook. Check our more jackets here. Maybe at next summer’s round of conferences, there will be twice as many people to ask about the paintings on their backs.
[Top image from flickr user Regina Holliday, bottom image from Veronica Combs]
