Healthcare Execs Have Varied Opinions On Patient Access To Medical Data

Not long ago, I wrote an item about an alleged exchange between Epic CEO Judy Faulkner and former Vice President Joe Biden. Reportedly, Faulkner questioned whether patients actually need their full medical records or are capable of understanding them.

Even if that particular exchange didn’t take place as written (Epic challenges the account) it still leaves me wondering whether her supposed views are widespread in the industry.

Now, I may have at least one answer. A recent write-up in Becker’s Hospital Review suggests that healthcare leaders are conflicted as to what part of medical records patients need, the circumstances under which they should have access to their records and if patients should own them. The article, which includes comments from five different healthcare execs, includes a wider range of view than I had expected.

For example, Daryl Kallevig, CIO of Aitkin, MN-based Riverwood Healthcare Center, argues that there are times when it might not be beneficial to let the patient see their entire record:

“Physicians and clinicians document in notes things they would hope patients may never see – [like] mental health patients or drug-seeking patients that come into our emergency room…[Also], if they’ve had an ongoing relationship for a number of years, would that patient or that physician want to see that compromised by a statement in a medical note? There has to be discretion in what is released to the patient.”

Keith Safian, former president and CEO of Sleepy Hollow, N.Y.-based Phelps Hospital, has a problem with the idea of patients owning their data:

“Patients should have unlimited access to the data, but since they did not create it and are not responsible for maintaining it, they do not own it…If the patient owned it, he or she could demand a hospital or practice destroy ‘his’ or ‘her’ medical record, which a hospital cannot do for many reasons.”

Another interviewee, CEO Grant Geiger of New York City-based EIR Healthcare, suggests that as clinical and technical models change, the whole notion of patient data stewardship will evolve:

“As we [look] beyond the EHR and we think about the adoption of [Internet of things] functionality… we need new guidelines and regulations in place for the future of healthcare. We are going to collect more data from patients in the next five years than we have in the past 10.”

In the interest of simplicity, I’ve edited out some of the nuances from these comments. Regardless, I think you will agree with me that they offer some food for thought.

I do have a couple of things I’d like to challenge:

  • Having written about the success of the Open Notes project, I’m not sure I agree with Kallevig that patient should be protected from the content of their records. My feeling is that in most cases, the patient would rather know what they say and deal with any comments they don’t like than miss important notes because of the care.
  • I take issue with Safian’s notion that patients shouldn’t own their records because it might be inconvenient for providers. Even if patients don’t own the records, or want to do something with them that’s impermissible by law, providers should at least think of patient is having moral ownership of the information. Any records request they make should be honored if possible, evaluated in light of their needs rather than it affects the healthcare organization.

That being said, I largely found the comments to be worth reading and considering. We can’t spend too much time thinking about patient access to records, not only for ethical reasons but also because we need to figure out how to use records to build engagement.

How about you, readers? To what extent would you like to see patients have access to and/or on their medical records? And why?

About the author

Anne Zieger

Anne Zieger

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

1 Comment

  • Seems to me patients are allowed by law to receive a copy of their medical records – if this is correct, why the discussion?

    Canadian law reads like this . . . .
    In McInerney v. MacDonald the Supreme
    Court of Canada ruled that the medical record
    belongs to the physician or health care
    institution that compiled it. The court also
    ruled that the patient has the right to examine
    the record and to copy all the information
    contained in it, including consultation and
    other reports obtained from physicians.
    The CMA holds that physicians should be
    prepared to provide a copy of the medical
    record to the patient upon request and to
    explain the information contained in it. Denial
    of access may be defensible in cases in which
    the physician reasonably believes that the
    patient or others will suffer substantial
    physical, mental or emotional harm because
    of information contained in the record. In
    McInerney v. MacDonald the Supreme Court
    of Canada explained that such exceptions are
    rare and that the onus is on the physician to
    justify denial of access.

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