Gimme my DaM Data: liberating to patients, scary to some

By e-Patient Dave

This guest post is part of the Festschrift of the Blogosphere celebrating HealthBlawg’s Tenth Blogiversary. Festschrift posts are appearing throughout the month of June 2016.

This is a story about culture change, legal change, and power to the people.

Ten years ago when HealthBlawg began I didn’t know I had kidney cancer, much less did I have a clue about health IT. A lot has changed since then, and HealthBlawg has been the cause of some of it, because its focus has been at the heart of the matter:

In the culture of medicine, whose data is it?

I say it’s my life that’s at stake, or my wife’s, or my mom’s, so I sure deserve to know the data’s accurate and complete and present where it’s needed. But some think your records are the provider’s creative work, like a woodworker’s plans or a cobbler’s shoe template. Some fools, like “shady firm Medical Justice,” have even asserted that what’s said in your doctor visit is the provider’s intellectual property and you have no right to even tell anyone what was said!

Some old-schoolers are threatened by patients seeing the chart; some even think it’s none of your business. Twenty years ago Seinfeld episode 139 showed Elaine looking at her chart and seeing she’d been marked “difficult.” The doctor took the chart from her hands: back then she had no legal right to see it… so she sent Kramer to get it, impersonating a doctor.

You should get your data – all of it. It may not be easy – some providers are severely out of date about your legal rights, and some resist for other reasons: some feel threatened, some know there are gross errors in the chart, some charts contain insults, and some contain flat-out billing fraud: conditions you don’t have, but they’ve been billing your insurance for.

When your doctor hesitates to give you your data, which reasons do they have? Only one way to find out.

The problem comes when a new doctor (or insurance company) looks at your chart and sees all kinds of wrong stuff. How can they possibly treat you right when your rap sheet is wrong?

“Gimme My DaM Data” is our rallying cry.

The solution is for you to be an e-patient – empowered, engaged, equipped, enabled. One of our rallying cries is “Gimme My DaM Data” (“Data about Me”). How that phrase arose and grew holds many lessons for students of change, students of health data, and especially for people who want their family to get the best possible care. As I said in a speech this spring (slides), medicine falls short when the right facts aren’t there.

In 2009 the world tipped.

•         February:

o   Four weeks after his inauguration, President Obama signed the ARRA economic recovery act into law, including the HITECH section, providing billions to get US medicine to computerize.

o   Separately, a week later I blogged that I’d decided to put my data in Google Health. I said that despite the privacy concerns I’d blogged in 2008, I believed “we can do more good by aggregating our data into large, anonymized databanks that smart software can analyze to look for patterns.”

o   A week after that a dozen followers of “Doc Tom” Ferguson decided to form the Society for Participatory Medicine: “a movement in which patients shift from being mere passengers to active drivers of their health, and their providers welcome them.”

•         March:

o   When that “shady firm Medical Justice” came to light, I blogged that it was “an almost comical attempt to hold back the tide.”

o   I set up my Google Health account and poked the button on my hospital’s portal to send Google my data. What came across was … garbage.

o   I pinged my hospital to inquire, and their response was … nothing. (Actually at one point they said 5,000 people have done it and nobody else has complained.)

o   I could have flamed but that’s not me, so I thought, and ultimately I decided to blog. My first pre-post, to position the issue, was an analogy: Imagine someone had been managing your money and you thought you weren’t qualified, ending with this: “Then imagine that one day you were allowed to see the records, and you found out there were a whole lot of errors, and the people carefully guarding your data were not as on top of things as everyone thought.”

•         April:

o   April 1: My post about it went live: Imagine someone had been managing your data, and then you looked.

•  It talked about and illustrated the garbage I found – not just outdated conditions, but things I’d never had – and all the implications of the errors: our medical data is often poorly managed; most people in medicine have no training at all in the basics of data quality that are well known outside medicine.

o   April 4: The Boston Globe called – their Washington health policy desk! – and asked permission to write about my blog post. What?? Why??

•  I later discovered it was related to HITECH: unbeknownst to me, some in DC were proposing that our new medical records systems should get pre-loaded with our histories in the same (wrong) way as what my hospital had sent Google.
•  Heck, all I knew was “This information is wrong! Didn’t anyone TEST this with real data before releasing it??” (Answer: no, they hadn’t.)

o   April 13: The Globe ran the article – on page 1, much to my surprise.

•  All hell broke loose: more than a hundred comments, plus phone calls, tweets and emails.

o   April 23-24: My primary physician Dr. Danny Sands and I both spoke at the “Health 2.0 meets Ix” conference in Boston. The Google Health story was the buzz of the hallways – how could a patient with no medical training debunk an approach – accidentally – that DC health policy minds were intent on using??

•  Lygeia Ricciardi was in the audience, representing Deven McGraw from the Center for Democracy and Technology (CDT).
•  Also there was Nancy Shute, of US News, reporting for their annual Best Hospitals issue.

May

•         Deven sent my first invite to a DC policy discussion, at CDT. I ended up seated next to Josh Seidman, whose most memorable remark was “My dog has a better PHR than I do.”
•         Nancy Shute wrote, for an article in the August Best Hospitals edition: Getting Medical Advice on the Web from Other Patients.

Summer: Enter Eysenbach, “Medicine 2.0,” and change

June: I knew the name Gunther Eysenbach as the man who “Doc Tom” had cited as reporting he’d found no cases of “death by googling.” So when Eysenbach asked me to do the opening keynote at his September “Medicine 2.0” conference, I was at first honored then surprised: me?? What do I know about medical conferences? But I said yes.

July: And at one point Eysenbach asked me something I’d never been asked: “What do you want for the title of your talk?” Life was spinning out of control, with more invitations to DC and elsewhere, so I had no time for this question so I blurted out: “Just call it ‘Gimme my damn data, because you guys can’t be trusted.” To my surprise he took it.

August: With discussion going wild in e-patient circles, I wanted to pursue change but I’d been ruined by cancer and the housing market collapse. One day I whispered to my friend Susannah Fox, “What I’d really like is a part time job with full benefits.” The next day my CEO called me in and said he was cutting my job in half because I was spending so much time in Washington. “But don’t worry,” he said – “you’ll still have full benefits.” (I am not making this up – you can ask Susannah.)

And so I got into healthcare, advocating for the patient’s perspective and patient rights.

It’s a movement – a real social movement.

This is a populist revolt against oppressive authority: all the cries for action come from the citizens and all the resistance comes from the people in power. And you know a movement is becoming a revolution when the artists and musicians show up.

Painter and cancer widow Regina Holliday started with murals, and  one large painting in 2010 showed our “dammed” data leaking out. Then she started the Walking Gallery of Healthcare, which now has hundreds of people wearing blazers and suitcoats with medical stories painted on the back. It’s a movement.

Two years later Ross Martin MD wrote and produced a music video with his garage band, “Gimme My DaM Data” changing Damned to Data About Me. It’s become the theme song of the movement. (Less well known is his “e-Patient Dave’s PHR,” inspired by Alice’s Restaurant.)

Ultimately each of us will have to get our data, organize it ourselves, and take it with us.

Today David Harlow is SPM’s policy chair, having authored numerous briefs for us, contributing to health data policy. The battle cry has become a coffee mug that you can buy on CafePress. In 2014 the Wall Street Journal wrote that 80% of medical records contain mistakes. (Do you know what’s in yours?? Have you checked??) Regina’s Walking Gallery has been in USA Today, and the OpenNotes movement now has five million patients who can see their providers’ visit notes … but still there are skeptics.

What a collection of people collided with me that year. Lygeia Ricciardi went on to create the office of Consumer eHealth at ONC; Josh “my dog’s is better” Seidman worked there (and was later President of SPM), and today Deven McGraw is in charge of health data privacy and access at the Office for Civil Rights.

Is this right? For me that was settled in 2012 when the Institute of Medicine published Best Care at Lower Cost, which said “the learning health system is anchored in patient needs and perspectives,” called for “patient/clinician partnerships” with “engaged, empowered patients,” and said data is another cornerstone. When the IOM says it – said it four years ago – there’s no place for skeptics to hide, intellectually.

In the culture of medicine, whose data is it?

No one has more of a stake in the data’s accuracy, completeness and availability, and numerous e-patient stories tell how things go wrong when the best facts aren’t present. The 2012 SPM post Who owns your data? Why? has many more thoughts, and even more in the comments. My favorite is from Marya Zilberberg: autonomy.

Policy work is important, but it’s a grind: it takes intellect and persistence. My personal and professional thanks to this blog, and of course to David Harlow himself, for his dedication to this cause.

Dave deBronkart, known on the internet as e-Patient Dave, is a leading advocate for patient engagement. After beating stage IV kidney cancer in 2007 he became a blogger, health policy advisor and keynote speaker. A co-founder and Chair Emeritus of the Society for Participatory Medicine, e-Patient Dave has been featured regularly in the mainstream media and the specialty press.