When I started Chilmark Research a dozen years ago, the big transformation that was going to rock the healthcare boat was Personal Health Records (PHRs). There was a tremendous amount of talk about patient empowerment, the ability to track one’s own health or health of a loved one. I even had the honor to travel to Washington D.C. to present to HHS Secretary Leavitt about how PHRs may change the care delivery model. It was a heady time.
It was also during this period that Kaiser Permanente was doing some excellent work prompting patient access to their records and we also saw the launch of both Google Health and Microsoft’s HealthVault in 2007 – two launches that received a tremendous amount of press and fanfare.
In retrospect, the ironic thing about all these early PHR efforts was that this was happening before the passing of the HITECH Act – a time when EHR adoption stood at a paltry 12-15% nationwide. Why would a patient need a PHR if their medical records were not even in a digital format? But as Microsoft promised time and again: “We are in this for the long term, we are willing to wait for the market to develop.”
I personally wrote quite a bit about HealthVault over the years tracking its triumphs and challenges until 2012. In 2012, Microsoft more or less pulled the plug on its grand ambitions in healthcare when it spun off most of its assets to form the now-defunct Caradigm. Yes, it kept HealthVault going under Microsoft’s CRM group, but I knew it was only a matter of time before the curtain would close on HealthVault as well.
That fateful day came on April 9th, when I received an email from Microsoft announcing HealthVault will be shuttered on November 20, 2019.
Though I have a HealthVault account, I can’t remember when I last bothered to look at it, as HealthVault just did not do what I needed it to. It did not automatically retrieve my records from my providers after a visit. It did not allow me to renew a prescription. It did not help me schedule an appointment or communicate with my care team. It did not help educate me when I was diagnosed nor provide a range of treatment options
HealthVault was nothing more than a digital filing cabinet and not a very good one at that. My HealthVault account was simply too hard to manage for far too little value.
Clearly, market readiness, timing and basic functionality all played a role in the demise of HealthVault. But there is an even bigger issue at play here. Since the inception of the HITECH Act, and one could easily argue before that, this industry continues to struggle with the lack of true interoperability.
The Patient as Savior for Interoperability Woes
While many place the blame on healthcare IT vendors for this interoperability problem, and they do share some of the blame, the majority of the blame lies with healthcare providers who are loathed to share such patient data, which may end up in the hands of their potential competitors. While most healthcare organizations promote consumer engagement, that engagement is myopic; only if you engage with me. This is the mantra of many a healthcare provider in the early PHR days. Unfortunately, this view persists today.
Early on, federal regulators stepped in and under the auspices of the HITECH Act and meaningful use requirements, providers were forced to open up and allow patient access to their medical records via a patient portal. Secondarily, regulators required providers to give a patient the ability to view, download and transmit their records.
While well-meaning, these regulations led to a plethora of patient portals, which few patients actually use. It is just a pain in the ass to remember a dozen different passwords and a dozen different ways to navigate a portal to get something done. Three years ago, in total frustration, I authored Kill the Patient Portal. What I stated then holds true today – nothing has really changed despite all the lofty pronouncements by providers regarding patient engagement.
“I think giving patients access to medical records might be the single most important thing we are doing to bend the #healthcare cost curve.” #TheHealthSummit
— Administrator Seema Verma (@SeemaCMS) April 11, 2019
The current administration, in apparent complete frustration regarding the lack of interoperability among providers today, is once again looking to the patient/consumer to drive interoperability. Their thesis is founded on the supposition that patients and consumers, once they have complete control of their medical records, will be able to readily go to the provider of their choice, present their records through something like Apple Health and viola, we have interoperability.
Seema Verma, the current head of CMS, has even gone so far as to state that providing this capability to patients and consumers will bend the proverbial cost curve. Not sure what she is smoking, but it must be darn good.
Sadly, this new approach does not address the same problem we, as consumers, have been dealing with for years – the preponderance of patient portals that an individual must manage. It plays well to the press and patient advocates, but will not solve the interoperability conundrum for two simple reasons.
First, too few citizens actively manage their health records. In an ad hoc survey I undertook of friends and family (n=22), only two individuals stated they have current medical records in a digital format that they actively manage.
Secondly, even when a patient has those records, oftentimes physicians choose not to review them, instead recording their own observations. When physicians and health organizations do accept these records, it is most often in PDF format and not directly incorporated into the EHR they use but put in a repository that few physicians review.
Many today point to FHIR (Fast Healthcare Interoperability Resources) as the savior to this second problem, but FHIR is still relatively new and not fully deployed at most institutions. We will have to wait and see just how large an impact it may have, but as is often said: Culture eats technology for lunch. The culture of the healthcare Borg needs to change significantly to enable technologies like FHIR and the promise of true interoperability. We should not expect nor rely on the patient/consumer to solve this issue.
Lessons Learned
Never, trust any large company’s entry into the healthcare IT landscape with promises of being there for the long term. This market sector is littered with broken promises from such companies.
Timing is everything. If you mistime market readiness and need, you will fail as few can wait out a market’s reluctance to adopt a given technology, even if it receives regulatory prompting.
Rapid adoption is driven by a clear business case. If that business case, despite its sound logic, runs counter to an existing one or is culturally incompatible, it will fail to gain traction.
The patient/consumer has not and will not be the savior to this industry’s interoperability woes and it is unreasonable, if not disingenuous, to expect them to.
The industry (vendors, providers and payers) needs to take full responsibility for the lack of interoperability we have today. They created the problem – they need to solve it.
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