The Unfulfilled Promise of Electronic Health Records and Patient Health Management

When 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:

Patients and doctors alike would benefit from having a complete health record, since almost no one uses the same doctor or medical practice over an entire life. Patients do not remember their current medication details, much less their complete medical history. This would enable far better healthcare.
The Dossia PHR helped patients manage both their healthcare and daily health needs. If patients wanted to shop for the lowest-cost MRIs, we enabled price comparisons. If they wanted to interpret different diagnostic test results, such as hemoglobin A1c, we helped them understand.
We also incorporated the Choosing Wisely guidelines, developed by expert physicians, which helped patients determine whether particular diagnostic tests they routinely obtained were necessary or desirable.
By being an intermediary between patients and health plan administrators, we also enabled them to get their records without the bureaucratic obstacles they would otherwise have encountered.
Since we launched three years after Hurricane Katrina, we believed that by having electronic records in safe redundant locations, patients would never again see lifelong paper health records destroyed by a single event.

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:

Creating a culture of health in an organization and reducing health-related costs were important enough tasks that the CEO should own them and assign the organization’s best talent to achieving these goals; and
Lodging accountability for health management in the patient was foundational to achieving these goals. Benefits leaders never accepted this principle, being wedded to the idea that benefits consultants, health plan administrators, pharmacy benefit managers, and healthcare providers were the “experts” accountable for patient health.

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:

Its failure to enforce interoperability and rigorous quality standards resulted in disastrous patient outcomes because of predictable data entry, data quality, and data communication errors and lapses.
Trying to get software vendors and healthcare providers to make this transition as rapidly as was needed to secure these financial incentives resulted in the deployment of inadequately tested and deeply flawed software. For example, in one case, a vital clinical note entered by a physician disappeared because a physician inadvertently bracketed the note for emphasis, whereas the software interpreted this bracketing as an attempt to delete the data.
It changed the flow of medical practice to increase the amount of keystrokes doctors had to do in front of patients and to reduce the quality of interpersonal dialogue doctors could have with patients.
It reduced the effective time doctors could spend with patients and ate up additional after-hours time doctors had used to stay current in their disciplines.
The micromanagement of the data entry process, particularly in combination with the adoption of a much more complex set of International Classification of Disease codes mandated for Medicare and commercial insurance payers over the last few years, meant that there was an exponential increase in data accuracy errors.
It focused inadequately on the need for doctors to provide detailed clinical notes to give context to their diagnoses and proposed treatments.

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:

Joseph Biden, while the Vice President, was managing his son’s battle with glioblastoma cancer in 2015 and could not get records transferred from one hospital to another.
The current head of Medicare and Medicaid Seema Verma was unable to access records of her husband’s 2017 hospitalization.

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:

Many healthcare providers do not want to give patients easy access to their own records. There are multiple reasons:
Many providers realize that if patients have all their records, they can switch more easily to another provider. Providers do not like to lose profitable patients.
Many providers have commented that better informed patients will go online, do more research and demand unwise care options.
Some providers deliberately withhold patient files because they believe that malpractice claims become easier if the patient has a complete record.
A few providers engage in blatantly fraudulent and wasteful care that becomes evident to patients, attorneys, or regulators.

Providers have made record acquisition costly and time-consuming. The federal and state governments have not been willing to play hardball with the worst of these offenders until recently.

Health plan administrators had two additional reasons for making it difficult for Dossia to get user records. Their agreements with employers generally had 3-5 year terms. If every patient had his or her claims data, the health plan administrator would lose leverage in renegotiating or renewing these agreements.

In addition, health plan administrators take the position, as do the pharmacy benefit managers and the labs, that the data they generate is a business asset of theirs and that they should be able to charge plan members or intermediaries like Dossia or the employers we represented in getting the data.

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.

The other culprits in this failure are the major software providers, whose software bugs have created serious health safety issues. The article highlights eClinical Works, which paid a $155 million fine, as well as Epic, NextGen, and others for serious safety violations. It also noted that software providers enter into agreements precluding customers from disclosing major software glitches, even those with disastrous consequences.

The Obama Administration was heavily lobbied by the software providers, like Epic, the health plan administrators, and the major healthcare providers, and it watered down and delayed interoperability regulations. Although it is far too late to help Dossia and its users and, obviously, too late for Vice President Biden and CMMS leader Verma, the 21^st Century Cures Act, enacted in December, 2016, specifically prohibited what it calls “information blocking” and directed HHS to issue regulations implementing this provision. The implementing regulations were issued this January.

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.