I knew Susannah Fox in my life before. I knew Susannah as a really nice Mom who would shop for her children’s toys without an edge of hurry or impatience. I knew her as a woman long of limb and filled with sunshine. I would see her walk within my store with a sun hat on her head and a smile upon her face. I would sell her toys, and she would buy them with gracious kindness and then depart.
That was my idea of Susannah Fox. I did not know her name. I did not know her job. I only knew that she was kind and was a good mother.
On May 27th 2009, I would meet Susannah again. I would meet her in a small health 2.0-group meeting that was my diving board into the world of patient advocacy. She would talk of pie charts and graphs. She would list statistic after statistic based upon her research at Pew as it applied to patient populations. She would take all those individual stories and combine them and compress them into the statistics or “hard” data.
As the months past, I grew to know more about this new Susannah. I would watch her choose her words carefully. I would watch a woman who said important things always supported by the facts. I would see a powerful woman who would often step back into the shadows, like a fair witness or an impartial observer. She did not advocate, she only told the truth.
This is Susannah’s Jacket: Data Mote. It is as serene and concise as the data she presents. There is no mess or unnecessary details in this picture. It is all angles and planes. It is all shadow and light.
In this painting we can see the silhouette of Susannah behind a Japanese Screen. She is presenting a speech. She is telling the world the results of the newest Pew research as it applies to health. She is doing it in shadow. The data itself gets the spot light. Susannah is just the vessel from whence the data pours.
On the right side of the painting a human figure stands. This is the data mote. This is the faceless patient. All unique identifiers have been removed. She/he/it has been scrubbed. This is clean data. But this creature seems rather sad as it holds onto the screen that shields Susannah from view. I do not think it shall peek though, as its head is lowered in submission.
Behind this figure is a window. In that window, shines beams of sunlight through a cloud. This is cloud technology and social media and it is changing things. This cloud with its bright shinning sun is changing the data space. Our data mote now has a long shadow. Perhaps that shadow will tell us more about this creature than we would ever have known before.
I love to think of data. I love to paint what data means. But sometimes the way we collect it and scrub it makes me sad.
When I painted Apples to Apples last year, I looked at quite a few data sets. I was saddened to see areas where data could not be reported because the population that had the disease or injury was so small as to be identifiable by a hospital data set. This applies especially to rare disease. And I thought of Fred. Kidney cancer is considered a rare type of cancer. Was Fred’s clinical outcome scrubbed, because to use it would have identified him? And then I wondered had anyone thought to ask him his wishes? Did he want to be included regardless of possible identification, if it would save lives?
I went to a Health 2.0 Meet Up in Bethesda not long ago where I asked about data donation. Can you imagine going to the DMV to renew your ID or your Drivers license and the staff would ask you two questions? Of course the standard, “Would you like to be an organ donor in the event of your death?” But what if that was followed by, “Would you like to release the content of your EMR/PHR for the purpose scientific study?”
Can you imagine a world where HIPPA was used in a different way? I sign a HIPPA release. I give permission to share my information. Some folks phrase this as “waiving my rights.” I disagree. I am using my right to share data.
I wonder how much our appreciation for data would change, if weren’t quite so clean? Humans are messy. Our lives and loves are messy. Not everything is black and white within medicine. To make a place for the patient story in the world of HIT, sometimes we have to use names. Sometimes we have to make personal.
I think Susannah does her best to make data sets personal, given the limitations within the current form. I am glad I got to paint this jacket for her and to sign it as an “Adult between the ages of 18-49.”
Well painted, and well put. Susannah has an uncanny ability to let the data speak for itself, while also framing that "speech" in a way that is poignant, personally relevant and powerful.ReplyDelete
It was very interesting to learn about earlier path crossings ... reminding me of the often under-appreciated power of consequential strangers and acquaintances.
Before, friends would remark on the thoughtfulness of the gifts I gave to their kids. It’s not me, I would tell them, it’s this woman who works at Child’s Play. She asks a few questions about the birthday boy or girl and then leads you through the aisles to the exact right gift. You should go see her, I’d say, she’s amazing. Little did I know!ReplyDelete
I remember the day I met Regina for real, at that small group meeting. Each person took 15-20 minutes to talk about their latest projects and I was eager when my turn came to workshop my next report, to lay out the latest survey results and talk through what the data meant. I was all about the numbers that day and took up more than my allotted time, I’m sure.
Regina spoke last and when she did, we all stopped. Stopped taking notes. Stopped checking email and Twitter. I stopped thinking about my numbers and started thinking about Regina’s numbers. How many hospitals Fred had been in over the past couple of months. How many kids they had. How many weeks he had been given to live. How many times Regina had asked for a copy of his medical record. How many cents she was told she had to pay per page of that record. How many days she was told it would take.
Half of the insights that the Pew Internet Project brings to our research is based on numbers derived from telephone surveys – quantitative data. It’s the hook that captures the attention of many reporters, policymakers, and other key members of our audience. Numbers, scrubbed clean, help us tell the story of the social impact of the internet.
But the other half of our insight comes from what’s called qualitative data. Interviews, online surveys, focus groups, when we listen to what people say, in their own words. My most recent qualitative survey collected stories from 2,156 members of the National Organization for Rare Disorders. I cried every day when I was analyzing that data set. And yes, it’s a data set. There are patterns, there are anomalies, there are trends.
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.
Regina, you have a gift. You don’t just listen – you hear. You don’t just watch – you see. And you don’t just tell – you show. And we all benefit, from the little girl who still talks about that watercolor set you found for me to the Secretary of the U.S. Dept. of Health & Human Services with whom you have shared the stage.
I love your jackets and you are right that they may sometimes be the only patients in the room when important conversations are happening or decisions are made.
Have you ever considered painting ties with some of these themes? There are many of us who try to bring the patient perspective with us into the hospital or clinic or Boardroom, and a tie could be a visual reminder to all of what is really important.
I started getting a little carried away with this idea and googled “customize ties”. Turns out there are lots of ways you can upload images onto ties. I am not trying to commercialize your work, rather I would love to see it spread to a wider audience. Just a crazy, late night idea for you to do with what you will.
Good luck with the walking gallery!!
Michael Coffey, MD
Excellent post and heartwarming exchange between Regina and Susannah. I did not see patients during my career (pathologist), but have been so privileged to meet so many in my retirement, beginning with e-Dave. Keep it up, your voices are so important.ReplyDelete
This is a beautiful story. You are both incredible women.ReplyDelete
Thank you for all you do,
As one of the people lucky enough to hear your story Regina, I salute you in the hard work that you are able to do with such creativity without getting lost in the art, the ability to bring it back to the real world and get people thinking about positive change.ReplyDelete
As I was walking my daughter thru the Mission district in San Francisco, we walked thru the mural covered alleys and I talked to her about deeper meanings in the art, and your work does so much in that regard.