"Data Mote" - Susannah's jacket

Susannah's jacket: "Data Mote"

On the evening of June 7th, SPM member and extraordinary painter Regina Holliday is leading a “Walking Gallery” in Washington, in which dozens of us will wear jackets on which she’s painted one of her visual allegories about healthcare today. She and, I think, seven other artists are doing original paintings on jackets mailed in from America, Canada, and other countries.

Through social media, Regina has become a global communicator, as well as a keynote speaker.

I don’t know how many she’s painted so far, but each one is announced to the world with a blog post – her narration of the story behind the painting.

I’m particularly moved by Thursday’s post, which is about the jacket she just painted for Susannah Fox, who posts here about her research. It tells of how she first knew Susannah as a customer in the toy store where she worked, then again as she stepped into patient advocacy while her husband was dying. And how Susannah’s data tells so much about the reality of people using the internet for health – a reality that’s so often misunderstood or incorrectly reported by others.

The special gift in this post, for me, is Susannah’s heartfelt reply, telling her side of the story: what a gifted assistant Regina was in that toy store, the day they met during Fred’s decline, and then the human side of her research:

“I feel a strong sense of responsibility to all of our respondents. They are all busy, doing a million things in their lives, and yet they take the time to answer our questions. Every time I sit down to write, I think about them in aggregate and individually. The people who make a way out of no way, like the woman who found an air pump for her husband’s therapeutic mattress on eBay when the manufacturer told her it had been discontinued. The man who, pre-internet, spent hours at the library researching his daughter’s rare disease and now marvels at what he can learn and share online. The family who has been passing down knowledge of their hereditary condition for over 100 years and now is able to share their wisdom online.”

The post, painting, and reply are here. As Susannah said on Facebook: “Regina Holliday has a gift and it’s up to all of us to help her share it.” Done.

A personal note about that research: the responsibility Susannah describes – and the people she’s talking about – are why it’s so important that any research about people’s online health habits be done thoughtfully, competently, carefully. This is why it’s so irresponsible – perhaps even harmful – when researchers do a bad job of it, or hide their methods or their data. This is important.

It’s a gift to know both Regina and Susannah.

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