Why Few Patients Access their Electronic Health Records?

In the GAO’s assessment (GAO 17-305)  of the Medicare and Medicaid EHR Incentive Program  (also called the Meaningful Use program), it was discovered that few patients access their Electronic Health Records (EHRs).  As of February 2017, these shareable health records are provided by over 517,000  healthcare professionals (and hospitals) across the country in EHR patient portals and are accessible over the internet.  In my last blog post, I described how the GAO report was seriously flawed because it obtained the bulk of its information from doctors, hospitals, and various experts–all who make money in the healthcare industry and therefore suffer from major conflicts of interest when reporting for patients.  There is a large discrepancy between what these businesses and experts are reporting and what is actually going on in the real world.  Let me elaborate on the reasons why I think few patients access their Electronic Health Records. The answers to this question do not lie in the GAO report that is supposed to hold the Department of Health and Human Services (HHS) accountable.

few patients access their Electronic Health Records

Doctors and Hospitals Educating Patients?????

The GAO makes it clear that informing and educating patients about Electronic Health Records has been left to the very doctors and hospitals that spent decades resisting them.  The Department of Health and Human Services (HHS) has no educational directive on informing and education patients.  The GAO report describes several ways that doctors and hospitals are educating their patients about Electronic Health Records based on a survey of 175 hospitals and 253 doctors (0.08% of the total). The GAO seems to be satisfied that this select group’s answers are both accurate and representative of all healthcare professionals and hospitals that had received money for participating in the Medicare and Medicaid Electronic Health Record (EHR) Incentive Programs. I have included the graphic from the GAO report below that shows the results from the survey.

few patients access their Electronic Health Records despite effortsI don’t know where these 428 doctors and hospitals do business in the United States, but I can tell you they are nowhere near anyone I know. My survey of friends, family, and others paints a totally different picture than the rosy picture of encouragement described in the report (e.g., “take steps to register patients for the portal at every interaction… help patients obtain a private e-mail address… staff wore buttons instructing patients to ask staff about the portal..installed billboards”).   I might suggest that the GAO researchers pay unannounced visits to these wonderful hospitals and see for themselves how factual their reporting actual was.

I am particularly frustrated by these reports because complaining about their patients’ lack of interest is a self-serving smokescreen. It brought doctors and hospitals watered down requirements (e.g., doctors only had to show that ONE patient electronically viewed, downloaded, or transmitted to a third party their health information) and diverted from the fact that they were actively discouraging their patients to use the shareable EHR patient portals the program created—especially after all the “incentive” money had been distributed. Point the finger of blame on the patients who despite their formidable efforts still fail to use their wonderful EHR patient portals.  This diverts attention from the fact that he doctors and hospitals are not performing as advertised.

Among the patients I have surveyed, it is extremely rare to have a doctor’s office inform a patient that electronic health records are available. Hospitals are even worse.  Getting Electronic Health Records access from them often involves hunting down the hospital employee who even knows what they are. There are no signs advertising EHRs and no handouts like there are for HIPAA rights. I was informed only once of the existence of an EHR patient portal and that was early in the Meaningful Use program when “incentive” money required that the doctors show participation. Even when I have asked “Do you have electronic health records”, I was often discouraged from gaining access.   I even came across several doctors who received tens of thousands of dollars from the Meaningful Use program yet provided no working EHR patient portals for their patients. When I complained to a government auditor about the subterfuge, I was rewarded with a wall of silence.

Do the Health Records in EHR Patient Portals Give Me What I Want?

Let’s assume that I am one of those patients that found out about the existence of my EHR patient portals and went to the trouble of signing up. Like any other potential product I might use, I will access it to see what it can do for me. If it performs a vital function, I will continue to use it and if not, I will abandon it.  As I have reported in earlier blog posts (see the list below), the EHR patient portals do not even come close to giving me what I want.

I want my shareable Electronic Health Records to

  1. Provide easily accessible and readable health data that I can use to manage my current health (e.g., tables/graphs showing my cholesterol and sugar test results over the past five years that would hint I needed to change some lifestyle habits or the discharge instructions from my last hospital stay)
  2. Provide health information (including medical images and other raw data) in every EHR patient portal that is easily downloadable so that I can combine them into one record ( a Personal Health Record (PHR)) for quick use when I need them (e.g. if I move, in an emergency, or for coordination of care with other healthcare professionals and hospitals).   I don’t want to redo tests and repeat information that is easily accessed electronically.

The EHR patient portals do not provide the things I want because they were not designed with the patients’ needs and wants in mind—they were designed so that individual healthcare professionals and hospitals can control what they want other healthcare businesses to see.  HHS and the GAO need to acknowledge this fact and start asking patients directly what they want/need and then acting upon that information.

The GAO recommendations–for HHS “to develop performance measures to assess outcomes of key efforts related to patients’ electronic access to longitudinal health information and use the information from these measures to help achieve program goals”–will never tell HHS why few patients access their Electronic Health Records. HHS can spend years asking healthcare professionals and hospital representatives why few patients access their Electronic Health Records and the results will always be self-serving and aimed at blaming patients for a lack of desire. The answers to this question do not lie with the healthcare businesses whose only goal is to maximize income and profits through control of health information access.

Why Few Patients Access Their Electronic Health Records

I have come up with three reasons why few patients access their Electronic Health Records. The reasons are as follows:

  1. Patients do not know they exist or don’t know what they can do for them. Doctors and hospitals are not informing/educating their patients that they even have Electronic Health Record (EHR) portals for their use. Either the bureaucrats in Washington assume they are or patients are expected to assimilate the knowledge by osmosis. The Department of Health and Human Services (HHS) has allotted no funds to bring patients up to speed on EHRs.
  2. Doctors discourage their use. If a patient does know to ask for electronic health records, doctors and hospitals strongly discourage patients from getting them—they do not advertise them, do not have any literature about the benefits of accessing and sharing them, and make connecting difficult.
  3. EHR patient portals don’t contain the information patients really want and need. The EHR patient portals containing shareable Electronic Health Records are designed so that individual healthcare professionals and hospitals can control what they want other healthcare businesses (and patients) to see and not with health information patients want or need.

If the Department of Health and Human Services (HHS) truly wants to know why few patients access their Electronic Health Records , the answer is simple—ASK THEM DIRECTLY.

Additional Reading

My First Electronic Health Records ,  June 2, 2016
Meaningful Use: The Pretend Program,  June 8, 2016
My Electronic Health Records Observations—2012 to 2016,  June 20 2016
Health Information Blocking—Example 1, July 1, 2016
Meaningful Use Program Scam or Business as Usual?,  July 31, 2016
Meaningful Use Self-Attestation—License to Steal Taxpayer Money?,  August 1, 2016

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