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Byzantine Access to My Health Data Serves Whom? Not Me

By August 19, 2017Advocate, Caregiver, ePatient
Man with confetti exploding out of his head

I have secondary progressive multiple sclerosis.  Today, I have a primary care physician in one health system, and four specialists in three other health systems (each has unique ownership, medical record, and patient portal). I use two retail pharmacies, one specialty pharmacy, and three lab services.  I also see an acupuncturist, chiropractor, physical therapist, and massage therapist. I use two durable medical equipment companies. These services almost exclusively communicate through me (or fax – my grandsons don’t know what a fax is). My personal team is my wife, two adult sons, their spouses, and a sister. I have to give them my sign in and password to access the portals. I use a spreadsheet, and three apps to track stuff. I don’t have the patience for the work of building my personal health record in an app. I have no idea what happens to my data in PatientsLikeMe and other businesses. I’d like to give authorization when I think it’s right and track who’s using what, but I can’t. I’m doing OK, thanks for asking.

In the past 20 years, I’ve lived in three different states, have had six insurance plans, seven retail pharmacies, three specialty pharmacies, and a compounding pharmacy. I have had five primary care physicians, four cardiologists, three neurologists, two urologists, one neuro-urologist, one neuro-muscular specialist, four ophthalmologists, three neuro-ophthalmologists, five massage therapists, four chiropractors, two acupuncturists, two physical therapists, and one wife. My name has been spelled three different ways, my med list has only been up-to-date and accurate for three of those 20 years.  I have found 12 significant errors in my records and have never been able to have those corrected even though I’ve tried for eight of them. My health record has never been shared electronically from one provider to another, but I’ve downloaded Open Notes and diagnostic results and emailed or copied and carried them. I’ve had to pay for copying my record three times.

I’ve never been an inpatient.

I’m still just one person! I’m white, male, own my own home, have no debt except the mortgage. I’m a registered nurse with a Master’s in Public Health. I have had every privilege and blessing. This byzantine system leaves me exhausted. Every chronically ill person I know has a similar story (but not every privilege and blessing). We’ve made almost no progress in twenty years. Maybe faster confusion. Is this for real?


  • Thanks so much for sharing and for your honesty, Danny.
    Indeed, some of this is Byzantine inefficiency. Some is caused by fear of having data interconnectivity and interoperability, so that health systems talk to one another (talk about us, that is).
    I was recently asked to give a talk on the behavioral economics of a national health record. This wasn’t in the US, where unique personal identifiers are rare, and held close to sacred. But still. It begged the question of what would it take for people to sign up for a national health record? Should it be an opt-in or opt-out? How to create urgency (even if it’s false urgency) to get people going? Issues of trust are related, of course. As are issues of the ease of signing up.
    But you, Danny, make the strongest case for a national health record – to make patients’ life easier, to allow for seamless care coordination, and ultimately, to improve health. Voila. I’ll be citing you at my talk.
    Bon courage,