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In May 2008, when the Roper poll asked a random sample of Americans “If your medical records and personal health information, such as test results and doctor’s instructions, were available to you online, how likely do you think you would be to access those records and information?” Sixty-five percent said they were somewhat, very, or extremely likely to access their records.  In the February 2009 stimulus bill, Congress asked the Health IT Policy Committee “to facilitate secure access by an individual to such individual’s protected health information” and “…  to facilitate secure access to patient information by a family member, caregiver, or guardian acting on behalf of a patient…”

CMS now proposes that in 2014, hospitals receiving the billions of dollars of Stage 2 federal EHR incentive payments must provide patients with electronic access to their hospital discharge information within 36 hours of leaving the hospital.  CMS is not only asking hospitals to give patients reasonable access to their own current and actionable health information, but it’s also trying to help patients and families address the wasteful and dangerous rates of hospital readmission and failures in continuity of care that haunt American healthcare.  But the American Hospital Association is arguing that “Establishing a web portal or other mechanism to provide patients online access to this magnitude of data is unrealistic and premature.”

The employers I work with have many concerns about the state of US health care – but near the top is the persistent idea that hospitals and doctors own and control health care information.  Employers are not allowed to find out the prices they are paying for care for their employees; they can’t find out which doctors get better outcomes; they can’t find out which ones use inappropriate treatments (like some of those recently cited in the Choosing Wisely campaign).  Now their employees are told that they can’t expect to get information about their own diagnoses, test results, and discharge medications for 30 days after leaving the hospital – that’s after leaving a hospital with certified electronic health records paid for by taxpayer dollars.

If there are legitimate concerns about the types or amounts of data to be released, or a need to control highly sensitive information, then AHA should identify those and allow CMS to make technical corrections.  But telling the tweeting, app-downloading, online banking, travelling, and prescription filling American consumer of 2014 – five years after Congress highlighted the need, eleven years after the Veterans Health Administration released my Health eVet (with a million users by 2010) – that she can’t see her medical records online??  That jeopardizes patient safety, limits patient engagement in their care, and is certainly not deserving of federal subsidy.

CMS Proposed Information to be Provided to Patients after Hospital Discharge:

·Admit and discharge date and location.
·Reason for hospitalization.
·Providers of care during hospitalization.
·Problem list maintained by the hospital on the patient (verified to be up to date)
·Relevant past diagnoses known by the hospital.
·Medication list maintained by the hospital on the patient (both current admission and historical, and verified to be up to date).
·Medication allergy list maintained by the hospital on the patient (both current admission and historical, and verified to be up to date).
·Vital signs at discharge.
·Laboratory test results (available at time of discharge).
·Care transition summary and plan for next provider of care (for transitions other than home).
·Discharge instructions for patient.
·Demographics maintained by hospital (gender, race, ethnicity, date of birth, preferred language and smoking status).

David Lansky, PhD is the CEO of the Pacific Business Group on Health

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7 Responses for “Enabling Patients to Be Part of Their Care”

  1. rbaer says:

    There are 2 different issues – health care contained in the MR, and pricing info.

    Re. the former, I do not know of any hospital where the following is the case:
    “Now their employees are told that they can’t expect to get information about their own diagnoses, test results, and discharge medications for 30 days after leaving the hospital – that’s after leaving a hospital with certified electronic health records paid for by taxpayer dollars.”

    Moreover, “the tweeting, app-downloading, online banking, travelling, and prescription filling American consumer of 2014″ is rather the exception than the rule in the inpatient population.

    Lack of online access to health care info is the least of the massive problems that the US health care system faces.

    Pricing info is a completely separate issue, it’s not part of the medical record, and as long as 3rd party payors pay different rates, it will be hard (but not impossible) to be made transparent, and it probably should be.

    • BobbyG says:

      Yeah. But, by definition (which curiously escapes the “efficient free markets” choir), transparency is inversely correlated with margin. The most “efficient markets” are inexorably the lowest profit, if that is gonna be your value worthiness criterion.

  2. Let’s be clear about what the AHA says and what hospitals do or don’t do. The objection raised by the AHA is in regards to the term “online”. People don’t leave hospitals without paperwork and MU 1 requires that discharge summaries be provided. The AHA’s main concern is with the privacy and security of massive “online” portals of medical information and with CMS’s jurisdiction regarding items covered by HIPAA and administered by OCR.

    Granted, this makes employers’ (and other interested and well connected parties) access to medical records harder, but I’m not sure this should be a taxpayer concern. I also doubt that pleasing the small minority of app downloaders should be a taxpayer concern, when millions of people can’t even access minimal medical services.

  3. Digory says:

    Great article, thank you for taking the time to address this issues, also I concur with one of the comments above that price is a totally different issue but one I believe we should have more control over it, and as consumers and it should be transparent as well.

  4. nir pengas says:

    great read, thanks david.

    the bundled payment initiative is another step in the right direction in the coordination of care. patients should be able to have more control and access to their records at any given time.

    another interesting initiative is SHIN-NY:

  5. ReSearch In Action says:

    Well stated, Mr. Lansky. Secure, open access to these dozen datum is a key step toward putting all the holders of stakes in care delivery together in one ecosystem for the first time. Please note this related thread:

  6. This is a very great read. The article is full of insightful points that are really worth thinking over. And, indeed, everyone deserves only the best when it comes to their health.

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