imageThis was not a theoretical question Dr. Farzad Mostashari, former head of the Office of the National Coordinator of Health IT in the Department of Health and Human Services, asked yesterday at the closing keynote of Day 1 of the Patient Engagement Forum.

Dr. Mostashari issued a challenged to the community of mischief-makers in health/tech patient advocacy: tell everyone you know to contact their doctors — by phone, email, patient portal, or in-person, on one designated day which he called a “Day of Action.”

Health IT journalist Neil Versel (disclosure: also a long-time friend in the field) covered this news story here in MedCity News:

In the meantime, here is my (abridged) transript of Dr. M’s talk, thanks to my note-taking skills. My own words are between carrots <> to provide additional context.

Dr. M. introduced his talk with an anecdote about his early days on the job in the public sector…

“I told Dr. Bob Wachter <author of The Digital Doctor, reviewed here in Health Populi> about a meeting where I was thinking about whether I had a right to be an advocate. I wrote on a 3×5 card, ‘welcome to the Federal government. Check your passion at the door.

“There is no shame in being a patient advocate. At one point we will all be there…when someone you love needs help and you want to help them. The good patient is the quiet patient, and the good family member is the family member who is not here <to health care providers and the health care system.>

“That feeling you have of helplessness: talk about the activated patient, I’m about as empowered a patient advocate for my mom as I could be. And I didn’t feel empowered at 3 in the morning when she’s having longer and longer runs of ventricular tachycardia…multiple complications from an elective operation. I didn’t feel empowered at 3 in the morning to ask to see the chart.

“Think about that: I’m a doctor. I trained across town. I knew the system. And I didn’t feel like it was OK for me to see the chart. Because that chart was, in economic terms – ‘rivalrous.’ That means if I have it, you don’t. If I have that chart, then the nurse doesn’t have it, because you see, it was a paper chart.

“Electronic information is non-rivalrous. You can have a copy and I can have a copy. It’s not taking anything away from you for me to have a copy.

“I just had a Twitter discussion with Eric Topol about ownership of the data. He is outraged and believes that we need new laws to give patients ownership of their own data. I said, ‘what do you mean, what law do you want to change? We have HIPAA, we have HITECH.’ It’s not the right that’s the problem: it’s the ability to exercise that right that’s the problem today.

“I don’t think we need more laws. I think we need more access.

<Dr. M. then moves on to discuss the beginnings of Meaningful Use discussions at ONC, when in a meeting with the head of the DHHS Office of Civil Rights…>

image“Regina Holliday (who) moved us to tears. She moved the head of OCR, a hardened badass prosecutor, to tears. And it hit us. OCR now has on their website a one pager that explains to patients their right to get access to their records.

“One of the 3 pillars of interoperability is the ‘HIE of 1.’ Family members should be able to get their own records from wherever they rest and share them with whoever they want. HIPAA absolutely enables this. It’s not a barrier: it’s an enabler. It cuts through the Gordian knot. But in order for that to be realized—and we are so close — but we’re not there yet. I can’t today tansmit my records from where they are today to where I want them to go. I can’t. That work is not done.

“With this topic, for the first time, I’m taking issue. There is demand. People want this. It’s not just regulators pushing doctors and hospitals pushing patients.

“I think we need to have a Day of Action. I’m sure this awesome community will rise to the challenge and get everybody we know to ask for their records on one day.

“What will happen if a million people in America ask for their records pursuant in their rights under HIPAA on one day?”

imageHealth Populi’s Hot Points: Beyond Dr. M’s assertion that people want access to their records, Accenture’s survey found that 4 in 10 patients were likely to switch doctors to get access to their records, shown in the pie chart. Growing activation among consumers, who are gaining knowledge about the new EHRs in their doctors’ offices and their family and friends’ growing use of health data, health apps and wearable technologies, are bolstering peoples’ personal workflows when it comes to using information for managing health. This trend will only grow with people connecting the dots between physical and financial wellness, and smart use of high-deductible health plans (the topic of my co-presentation this week at HIMSS on Wednesday 15th April 2015 at 830 am).

We may be able to witness the response to that question in the next several weeks…so stay tuned to the Health Populi and your other favorite social health channels as we learn the date for the Day of Action. Then tell your friends, families and colleagues to Ask Their Doctors for their records…

For more on what’s gotten under Dr. Mostashari’s craw, see page 51 of this Meaningful Use DHHS document