[WG-P3] Why Can't Patients See Their EHR Data?
mark.lizar at gmail.com
Thu Dec 1 05:41:17 EST 2011
Interesting and timely article in advance of today's call on research
at the US from Toronto researchers.
Begin forwarded message:
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> Quis custodiet ipsos custodes?
> ISPI Clips 162.376: Why Can't Patients See Their EHR Data?
> This From: InformationWeek, November 29, 2011
> Why Can't Patients See Their EHR Data?
> Journal of the American Medical Informatics Association
> outlines arguments for and against expanding patient
> access to their health data.
> By Ken Terry, InformationWeek
> November 29, 2011
> Should healthcare providers give patients access to their electronic
> records and if so, how do they make that happen? A new review in the
> "Journal of the American Medical Informatics Association" (JAMIA)
> the complexities of giving patient access to their records online.
> Written by researchers at the University of Toronto but focused
> largely on
> the U.S. environment, the study notes that while EHR data is not
> being shared with patients, many consumers want access. And research
> suggests that data sharing with patients, coupled with communication
> education, can help improve efficiency, quality of care, and patient
> satisfaction while also lowering costs.
> On the other hand, the researchers point out, there are many
> barriers to
> making that goal a reality. Among them are:
> -- The cost of integrating patient access features into existing
> EHRs that
> were not designed for it.
> -- The fragmentation of data into many health information silos
> maintained by different organizations.
> -- Lack of understanding of the privacy implications of online
> data sharing.
> -- Liability concerns that may arise from the sharing of data
> among patients and multiple providers.
> -- Disagreements over whether patients or providers control the data.
> -- Disagreements over how timely patient access to data should be.
> -- Lack of a consensus regarding which portions of an EHR should
> be available to patients.
> -- Questions about whether physicians should be able to screen
> certain information, such as lab results, before patients can see
> -- The inability of patients who lack medical training to understand
> much of the data in an EHR.
> -- The lack of time (and incentives) for physicians to translate
> their EHR data into laymen-friendly terms.
> Under the federal Health Insurance Portability and Accountability Act
> (HIPAA), every person "has a right of access to inspect and obtain a
> copy of
> protected health information." Although that data is supposed to
> electronic if it originated in an EHR, in practice it is usually
> printed out
> for patients when it is provided at all, according to Robert
> writing in the "New England Journal of Medicine."
> The Meaningful Use regulations http://tinyurl.com/7eqx6rw require that
> outpatient providers give patients clinical summaries within three
> days for at least half of all office visits, if requested. Hospitals
> have to
> provide an electronic copy of discharge instructions upon request.
> Despite these laws and regulations, the access of patients to their
> electronic health records is still highly variable, and the JAMIA
> cites compelling arguments both for limiting and for extending EHR
> The arguments for limiting access revolve around the fact that
> don't know as much as physicians do about healthcare. If patients
> see things
> in the EHR that they don't understand, for example, they may become
> confused, upset, and prone to jump to conclusions, the authors note.
> One way
> to deal with that might be for organizations to hire health
> educators who
> are available to explain the data to patients. But that doesn't seem
> to be
> an option for small practices. <| Powered by www.ISPIClips.com |>
> Similarly it may not be a good idea to provide the entire EHR to a
> when physicians make notes concerning matters that patients would be
> off not knowing about. For example, if a doctor writes that a
> patient is a
> suicide risk, he or she might not want the patient to see that note.
> One argument for expanding patients' access to data is that they
> might not
> receive it in a timely manner if they have to wait for their
> physicians to
> be available. "To avoid this, [a study by] Halamka et al recommends
> providers engage in timely review periods to enable verbal, face-to-
> discussions about new test results before revealing them to patients
> a patient-accessible EHR," according to the JAMIA researchers.
> The authors' conclusions are fairly modest: Withholding electronic
> from patients isn't a tenable option anymore. And second, IT vendors
> work with providers and patients to address the issues involved in
> sharing. "The valid concerns that are raised should not block
> access but should inform the design and maintenance of new systems
> to ensure
> optimal use for both patients and providers," they conclude.
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