[WG-P3] Why Can't Patients See Their EHR Data?

[Mark Lizar]

Interesting and timely article in advance of today's call on research  
at the US from Toronto researchers.

- Mark




Begin forwarded message:

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> ISPI Clips 162.376: Why Can't Patients See Their EHR Data?
> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
> This From: InformationWeek, November 29, 2011
> http://informationweek.com
>
> Why Can't Patients See Their EHR Data?
> http://informationweek.com/news/healthcare/patient/232200373
>
>   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  
> health
> records and if so, how do they make that happen? A new review in the
> "Journal of the American Medical Informatics Association" (JAMIA)  
> examines
> the complexities of giving patient access to their records online.
> http://tinyurl.com/8ysn866
>
> 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  
> typically
> being shared with patients, many consumers want access. And research
> suggests that data sharing with patients, coupled with communication  
> and
> 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  
> it.
>
> -- 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  
> remain
> 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  
> Steinbrook,
> writing in the "New England Journal of Medicine."
> http://tinyurl.com/76mwd5r
>
> The Meaningful Use regulations http://tinyurl.com/7eqx6rw require that
> outpatient providers give patients clinical summaries within three  
> business
> 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  
> own
> electronic health records is still highly variable, and the JAMIA  
> article
> cites compelling arguments both for limiting and for extending EHR  
> access.
>
> The arguments for limiting access revolve around the fact that  
> patients
> 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  
> patient
> when physicians make notes concerning matters that patients would be  
> better
> 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  
> that
> providers engage in timely review periods to enable verbal, face-to- 
> face
> discussions about new test results before revealing them to patients  
> through
> a patient-accessible EHR," according to the JAMIA researchers.
>
> The authors' conclusions are fairly modest: Withholding electronic  
> records
> from patients isn't a tenable option anymore. And second, IT vendors  
> should
> work with providers and patients to address the issues involved in  
> data
> sharing. "The valid concerns that are raised should not block  
> [patient]
> 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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