Patient Access to Health Data: The AHA Doesn’t Really Want to Know

Posted on March 8, 2018 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

As Spring holds off a bit longer this March in New England, it’s certainly pleasant to read a sunny assessment of patient access to records, based on a survey by the American Hospital Association. Clearly, a lot of progress has been made toward the requirement that doctors have been on the hook for during the past decade: giving patients access to their own health data. We can also go online to accomplish many of the same tasks with our doctors as we’re used to doing with restaurants, banks, or auto repair shops. But the researchers did not dig very deep. This report may stand as a model for how to cover up problems by asking superficial questions.

I don’t want to denigrate a leap from 27% to 93%, over a four to five year period, in the hospitals who provide patients with their health data through portals. Even more impressive is the leap in the number of hospitals who provide data to patient caregivers (from zero to 83%). In this case, a “caregiver” appears to be a family member or other non-professional advocate, not a member of a health team–a crucial distinction I’ll return to later.

I’m disappointed that only 50% of health systems allow patients to reorder prescriptions online, but that’s still a big improvement over 22% in 2012. A smaller increase (from 55% to 68%) is seen in the number of providers who allow patients to send secure online messages, a recalcitrance that we might guess is related to the lack of reimbursement for time spent reading messages.

That gives you a flavor of the types of questions answered by the survey–you can easily read all four pages for yourself. The report ends with four questions about promoting more patient engagement through IT. The questions stay at the same superficial level as the rest of the report, however. My questions would probe a little more uncomfortably. These questions are:

  • How much of the record is available to the patient?
  • How speedily is it provided?
  • Is it in standard formats and units?
  • Does it facilitate a team approach?

The rest of this article looks at why I’d like to ask providers these questions.

How much of the record is available to the patient?

I base this question on personal interactions with my primary care physician. A few years ago he installed a patient portal based on the eClinicalWorks electronic health record system used at the hospital with which he is affiliated. When I pointed out that it contained hardly any information, he admitted that the practice had contracted with a consultant who charges a significant fee for every field of the record exposed to patients. The portal didn’t even show my diagnoses.

Recently the affiliated hospital (and therefore my PCP) joined the industry rush to Epic, and I ended up with Epic’s hugely ballyhooed MyChart portal. It is much richer than the old one. For a while, it had a bug in the prescription ordering process that would take too long to describe here–an interesting case study in computer-driven disambiguation. My online chart shows a lot of key facts, such as diagnoses, allergies, and medications. But it lacks much more than it has. For instance:

  • There are none of the crucial lab notes my doctors have diligently typed into my record over multiple visits.
  • It doesn’t indicate my surgical history, because the surgeries I’ve had took place before I joined the current practice.
  • Its immunization record doesn’t show childhood immunizations, or long-lasting shots I got in order to travel to Brazil many years ago.

Clearly, this record would be useless for serious medical interventions. A doctor treating me in an emergency room wouldn’t know a childhood injury I got, or might think I was suffering from a tropical disease against which I got an inoculation. She wouldn’t know about questions I asked over the years, or whether and why the doctor told me not to worry about those things. My doctor and his Epic-embracing hospital are still hoarding the data needed for my treatment.

How speedily is it provided?

Timeliness matters. My lab results are shown quickly in MyChart, and it seems like other updates take place expeditiously. But I want to hear whether other practices can provide information fast enough for patients and caregivers to take useful steps, and show relevant facts to specialists they visit.

Is it in standard formats and units?

Although high-level exchange is getting better with the adoption of the FHIR specification, many EHRs still refuse to conform to existing standards. A 2016 survey from Minnesota says, “Most clinics do not incorporate electronic information from other providers into their EHRs as standardized data. Only 31 percent of clinics integrated data in standardized format for immunization, 25 percent for medication history, 19 percent for lab results, and just 12 percent for summary-of-care records.”

The paragraph goes on to say, “The vast majority said they fax/scan/PDF the data to and from outside sources.” So FHIR may lead to a quick improvement in those shockingly low percentages.

Labs also fail to cooperate in using standards.

Does it facilitate a team approach?

This is really the bottom line, isn’t it–what we’re all aiming at? We want the PCP, the specialist, the visiting nurse, the physical therapist and occupational therapist, the rehab facility staff, and every random caregiver who comes along to work hand-in-latex-glove as a team. The previous sections of this article indicate that the patient portal doesn’t foster such collaboration. Will the American Hospital Association be able to tell me it does? And if not, when will they get to the position where they can care collaboratively for our needy populations?