Health IT and Dad

Health information technology has, in many ways, been a calling for me. I passionately believe in the ability of technology and information to reduce costs, improve quality and transform healthcare. For the last seven years (I won’t say the “better part” as my wife and kids would probably not appreciate that characterization…on the other hand, they would quickly confirm that it has consumed most of my waking hours), I have collaborated with hundreds organizations in healthcare and technology across the public sector and the private sector to try and positively influence the adoption and use of health information technology. By many measures, this work has been successful.

Awareness levels and perceived value of health IT among doctors, hospitals, policymakers and many other audiences has improved dramatically. A wide majority of physicians in the U.S. have by now adopted technologies such as electronic health records and e-prescribing. Playing a small part in this progress to date has been the most gratifying work of my career.

But then came Dad and his own personal experience with health IT. My father’s experience as a patient has left me questioning the level of progress that has been achieved.

Dad suffers from a progressive neurological disorder which has been difficult for his doctors to diagnose but is likely multiple system atrophy. In the past 9 months, he has experienced a very significant loss of vision, mobility and physical strength. The search for what’s causing this and what can be done about it has led him from his internist to an ophthalmologist, a neurologist, a neuro-opthalmologist and an immunologist. Following months of consultations and tests, an official diagnosis remains elusive. Effective treatment of symptoms, much less the underlying disease, has been similarly challenging. And while the lack of progress in his clinical evaluation and treatment has been frustrating to him and our family, the management of his care across providers has been equally so.

To be clear, my father perceives his doctors to be first rate clinicians (this is not faint praise from a man who spent 30-plus years working closely with physicians across the country and the nation’s leading medical societies as part of his job with a major pharmaceutical manufacturer). Members of my family with professional, clinical training agree with Dad’s assessment. When viewed as a team of caregivers, however, the assessment is more challenging.

As a team of caregivers, they struggle with a most fundamental challenge: an inability to share information. Whether a summary of a visit, a lab test result, medication list – records of my father’s clinical care either take too long following appointments (i.e., months, not weeks would go by) or they are not shared at all. This was particularly true when it came to specialists communicating back to my father’s internist, who acts as his primary care physician. When information did arrive, it was most often by fax. Fax or mailed letters (arriving months after a visit) has been the standard approach to health information exchange between members of his care team. This, despite the fact that each provider used an electronic health record system.

Now, given my background, I was well acquainted with the ability of different brands of electronic health records to share information (read: It is the Mr. Snufalufagus of health IT…it doesn’t exist). To be clear, many in government, industry and provider settings have been working tirelessly to change this…to create the standards and other means of enabling “interoperability” between disparate EHR systems. That said, there is a big difference between knowing through my work that this was an issue and experiencing it firsthand.

The reality of it all is quite sobering: appointments go on without the presence of critically important clinical information…care is simply not able to be coordinated despite the incredible dedication of my dad’s internist.

In a somewhat desperate attempt to correct the situation, we created a personal health record for dad. The idea was simple: if nobody else is able to maintain a complete record of my father’s care, then we will. We simply needed to gather up all the missing information and then, when necessary, share it out with whoever was providing him care. Suffice to say this has been anything but simple. Though I had a willing and capable partner (the very caring and diligent office manager at my dad’s PCP), the task of tracking down late or missing records is akin to herding cats.

So what now? News that the local health system (to which his PCP belongs) will be participating in an ACO is an encouraging sign. But it is unclear how this will change coordination of care if all his physicians remain on separate EHR platforms and are technically — and perhaps otherwise – prevented from exchanging health information.

During this week’s Health 2.0 conference, health information exchange at the patient level remained decidedly a 1.0 experience. I would ask, nay, beg all EHR vendors and health systems everywhere to please take the necessary steps to meet this challenge – and quickly! Support and implement industry standards and adopt whatever means necessary to facilitate this most basic feature of health IT. Why wait for Stage 2 when this has such a fundamental, meaningful benefit for patients and caregivers today.

Rob Cronin is the practice leader, health technology and transformation at WCG, an independent global strategic communications consulting firm.