The Unfulfilled Promise of Electronic Health Records and Patient Health Management

The Unfulfilled Promise of Electronic Health Records and Patient Health Management | By Mike CritelliWhen I retired from Pitney Bowes in 2008, I was heavily focused on making a difference in health and health care.  Many people correctly noted that it was easier to get a complete history on their cars than on their bodies. Unfortunately, over a decade later, it still is. 

I committed to solving this problem by leading the Dossia Service Corporation for 8 years (2008-2016), a for-profit company owned by a Consortium of 10 self-insured employers.  The premise of Dossia was that large self-insured employers would provide their employees with lifelong, portable, comprehensive, patient-controlled electronic health records.  

This is called a “Personal Health Record,” or PHR, as opposed to a healthcare provider, a pharmacy, a test lab or an insurance payer, record, which are generally called “Electronic Health Records,” or EHRs.  This record would be accessible from anywhere and available to both patients and anyone else who needed it.  

Our business was based on sound clinical care principles: 

This was a truly disruptive, transformative innovation designed to put the power of health and healthcare management firmly in the patient’s hands, not in the healthcare system. 

Our business failed in 2016.  With one exception, our large employer founders left us.  There were individual reasons not worth recounting, but, overall, the individuals responsible for Benefits management did not want to fight health plan administrators, healthcare providers, pharmacy benefit managers and test laboratories.  Moreover, they and the leaders to whom they reported did not accept our two foundational premises: 

There were other issues in what turned out to be a “perfect storm,” such as our need to access additional funding right after the 2008 financial crisis.  However, even if we executed perfectly, what happened in the healthcare industry would have doomed us to failure. 

What initially gave us hope was the apparently bold step the Obama Administration took in enacting what became known as the HITECH provisions of the 2009 stimulus legislation.  Two dictates of HITECH were directly relevant to our quest:  (i) the healthcare community was offered strong financial incentives to convert to fully electronic health records; and (ii) the Department of Health and Human Services was directed to issue regulations requiring healthcare providers to make health records be fully interoperable with and transferable to other electronic health record systems by January 1, 2014. That entire legislative and regulatory initiative was a major failure. 

Kaiser Health News produced and Fortune magazine published a cover story in its April, 2019, issue entitled “Death by a Thousand Clicks” by Erika Fry and Fred Schulte, and subtitled a “Botched Operation.”

https://khn.org/news/death-by-a-thousand-clicks/ 

This story details both the ambitious aspirations of this legislation and regulations and the reasons it failed.  It is essential reading for anyone who believes that the federal government should take over all healthcare.  

The federal government gave away $36 billion of taxpayer money in financial incentives to effect this conversion, but it failed in so many different ways: 

However, most disappointing was that patients still have great difficulty either getting access to their records or getting them transferred from one healthcare provider to another.  

Two stories stand out in this 16-page story:

There are some “dirty little secrets” Dossia encountered on behalf of our users and which patients encounter every day trying to get access to their records:

The Benefits managers with whom we had contractual relationships often found themselves under severe pressure from their health plan account manager counterparts not to employ an intermediary to fight for plan member data rights. 

https://www.healthlawadvisor.com/2017/12/12/information-blocking-in-the-21st-century-cures-act/

EHR data recording systems are designed to enable providers to capture and bill more revenue.  They are suboptimal for helping doctors and other providers prepare effective clinical notes.  They require data doctors and patients do not need, and make it difficult to record the data they do.

Dossia’s most important benefit, equipping patients to be exceptional managers of their own health and healthcare, has not adequately progressed.  The political debate today is still stuck on health insurance and healthcare access, not what matters most to health: what happens in the communities and daily lives of patients outside of the healthcare system.

The national debate on health insurance coverage is a worthy subject for addressing the problem of financial stress from large health insurance or healthcare bills, but the solution to our health and healthcare crises lies elsewhere in initiatives like a next-generation version of Dossia.