health records

I’ve been heard here on the topic of getting a barcode tattooed on my neck to avoid having to fill out another one of those damned forms-on-a-clipboard at a medical provider’s office. I’ve also been heard all over the interwebz (mostly Twitter) on the excrescence that is poly-portalitis syndrome (PPS), caused by the plethora of portals presented by providers under current EHR adoption drive.

In late 2013, I had a V-8 forehead slap moment, realizing that a QR code – I have created several of those, including the one (different than the tattoo!) on my business card – would be a great way to accomplish my objective. QR code reader smartphone apps are in relatively common use, and I also figured that a tattoo would be a conversation starter in the rooms where I work to shift the medical-industrial complex’s thinking on patient engagement and participatory medicine.

Even though it took me over six months to find a tattoo artist willing to do this – and I live in the 3rd most tattooed city in America, according to a Today Show story in 2010 –  and then another couple months to gather the shekels to pay for it, almost a year ago, on June 18, 2014, I presented myself at Graffiti’s Ink Gallery for my inkapalooza.

This was not my first tattoo rodeo. I had done what I thought was required due-diligence in researching the size and pixel resolution on the QR code itself, and had had a couple of meetings with the artist to make sure we were on the same ink dot. I created a page on this site, password-protected it, created a QR code that linked to that page, and we were good to go.

On that page, after you plug in the password that’s inked at the bottom of the tattoo (and is not fully visible in any picture of it that has been shared online, anywhere), you see two documents:

• My Microsoft Healthvault [MSFT shut down Healthvault in 2019, I’ve moved my data to GetRealHealth‘s Lydia app] export document in PDF, which has
  • My full health history back to Year 1 of my life
  • Medication record, past and current
  • Allergies
  • Emergency contact
  • Primary care MD info
  • Insurance info
• My Advance Directive (everyone should have one – build your own by clicking this link)

I think I scared the artist-kid during the actual tattooing process, by the way. For the uninitiated, getting a tattoo on a bony part of your body – skull, spine, STERNUM – can hurt like a mother. I have a large, 5 color tattoo on my right shoulder blade that, 20+ years later, I can still recall hurting pretty hard during its application. I knew going in that this would be ouch-y, but at [redacted] years of age, after navigating cancer treatment and other slings and arrows of outrageous medical fortune, tattoo ouch-ies ain’t a thing in my world.

The artist had, I discovered later, booked out 3+ hours on his schedule for me that day, figuring that I’d be asking for frequent breaks due to the pain of application. I didn’t stop him once, and he finished up in just over an hour. He looked at me in a way that made me think he was waiting for me to eat some broken glass, or a couple razor blades. Again, given my time on the planet and my life experience, 60+ minutes of having my sternum hammered by a tattoo needle wasn’t a big deal.

Why did I do this? Because I’ve been waiting for the medical-industrial complex to deliver on their promise of health information exchange (HIE), the promise that they’ve been making for years, but have yet to fork over. I can, and do, securely move money around the globe at the click of a mouse. I do it via bank accounts, purchase agreements, contracts with clients. Most people do. But my healthcare record – which is MINE, as much as it is the property of the medical providers who gave the care it describes – is in fractured bits and pieces all over ever’where.

So I rolled my own, and nailed it to my sternum. Any questions?

 I’ll totally get one. Srsly.

I confess that I’d happily get a barcode tattooed on my neck if it meant I’d never have to fill out another ****ing health history form in a doctor’s office.

I’m totally serious.

Paper records are so … 19th century. With the advent of the current iteration of “health care reform” (which is really “health INSURANCE reform,” but that’s a blog post for another day), much has been made of the importance of Electronic Medical Record (EMR) systems in building a national Health Information Exchange (HIE).

Medicine = Acronym World. The Pentagon are pikers when it comes to fogging the battlefield with impenetrable letter-fication.

21st century health care certainly must involve a lot of easily-shared data, with health history and diagnostic information traveling literally at light speed between doctor’s offices, hospitals, and clinics. Not only does it speed care, it can ensure safety: the right record, with the right patient, makes the right care clear.

The thorny-issue part is this: whose data is it, anyway? Doctors certainly need to have full access to all the data on patients they’ve treated. Hospitals have to keep records on the people they’ve treated on their wards, in their clinics, and in their ORs. Payers (insurers, Medicare, Medicaid, et al) need data access to pay claims, track demographics, and create statistical and financial forecasts. And patients must have access to their own data, at minimum to vet it for errors, at best to own a full copy of their health history since birth to share with providers and care-givers.

I spent 8 months trying to correct an error on the report for the breast MRI I had in 2008 as preparation for my cancer surgery. The report said “family history of breast cancer.” NO. I was Patient Zero, there was NO family history of breast cancer. I fought for eight months, and I’m still only about 90% convinced the error is completely expunged. Patients need access, and we also need easy recourse to error-correction.

Back to EMRs and data exchange: access to patient data must be completely available to all concerned parties. That means doctors, healthcare facilities (hospitals, clinics, et al), and PATIENTS. However, the discussion about healthcare technology almost never includes patients. We’re considered, at best, bystanders; at worst, annoying insects.

E-Patient Dave DeBronkart – Mr. Gimme My Damn Data himself – was the 1st person I heard use the term “e-patient”. The E stands for empowered, engaged, enabled, equipped, equal – not electronic, although that’s certainly a supporting foundation for the e-patient movement. E-patients are usually placed in the “annoying insect” category by healthcare providers who don’t want to share – which can include payers, who can turn a simple record request into a Bleak-House level of bureaucracy. The most epic story in recent history, IMO at least, is Regina Holliday’s now-famous 73 Cents post (and the painting it talks about) – charging patients for access to their own data (at 73 cents a page) borders on the immoral, if not the criminal.

In the long slog through working groups, committees, implementations, and reports-to-the-board that is EMR and HIE development, don’t let the healthcare system leave us – the patients – out of the conversation.

It might be their data, too – but at root, and always, it starts with us. It’s theirs, yours … ours.