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Peter Elias with patient

Peter Elias working with a patient, from the SPM website

Peter Elias MD (in photo at left) is a member-at-large on the board of our Society for Participatory Medicine. See his earlier posts here. Particularly relevant is his Proposal for a TRULY patient-centered medical record, The experience he recounts here, as a caregiver of a family member trying to partner with her providers, fell far short of that vision of true patient-clinician partnership.

There is much to learn here, from the comparison. Current portals were developed to meet Federal reimbursement guidelines – whose requirements were negotiated downward to make reimbursement easier. What can we do, to move beyond this state? 

I recently spent nearly a week at the bedside of a hospitalized elderly relative. After discharge, I used the Partners HealthCare portal to notify my relative’s PCP. I gave a very brief (one paragraph) summary of the presentation and hospital course, some pertinent lab and x-ray values, her changed discharge medication list, her status at discharge, the discharge plan, and the 2 items needing follow-up.
I got a prompt and constructive reply from her PCP, which is great.
Not so great was the fact that, because of a 1500 character limit, I had to divide my information into three separate messages. Fifteen hundred characters is less than 11 tweets, and represents a very significant barrier to the quality and safety of clinical communication between patient and clinician.
I provided this feedback to the organization and was told the “…character limit was requested by the clinicians within Partners Healthcare…was set by the development team per the decision of the executive clinical team members.”
They did not comment on my suggestion that if the character limit is important, it should be possible to attach either a text or Word document to a message. (Their system allows only image formats.)
I find this very disappointing. The implication is that the clinicians at Mass General, the Brigham, McLean and others do not really want to allow patients to provide useful clinical information. They want to receive postcards rather than letters, which is the online version of interrupting the patient after 18 seconds. It’s like saying to patients: “I’m really not that into you.”
The institutions that use the Partners Healthcare gateway include:
Brigham and Women’s Hospital
Massachusetts General Hospital
Brigham and Women’s Faulkner Hospital
Cooley Dickinson Hospital
Martha’s Vineyard Hospital
McLean Hospital
Nantucket Cottage Hospital
Newton-Wellesley Hospital
North Shore Medical Center
Partners Community Healthcare, Inc.
Partners HealthCare at Home
Spaulding Rehabilitation Network
From my perspective, the root cause of this communication ‪#‎fail‬ is that portals are generally built without much input from patients and are designed to qualify for financial rewards by meeting CMS metrics, rather than designed to meet patient needs.


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