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.
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I got a prompt and constructive reply from her PCP, which is great.
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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.
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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.”
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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.)
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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.”
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The institutions that use the Partners Healthcare gateway include:
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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
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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.
Dear Peter,
Thanks for your post. I led the design and rollout for Patient Gateway at Partners Healthcare for 10 years (2000-2010). In the early days, provider and staff concern about patient messages was high. They had no data, but worried that a high volume of messages, lengthy messages, rambling unfocused messages, messages of an administrative nature (e.g. can you reschedule my appointment?), or messages creating liability (e.g. a suicide note sent on a weekend to an unmonitored mailbox, or using an electronic message to report 10/10 chest pain instead of calling 9-1-1) would occur FREQUENTLY and would outweigh any positives.
In 15 years now since the initial design, based on data from many organizations as well as personal communications, its very clear that the anticipated SURGE in unwanted messages is a fiction. Patients are very respectful of their doctor’s time, try to be succinct, try (for the most part) not to bother unnecessarily, and most are busy themselves. A few *do* use messaging a lot, but often they are the same ones messaging the practice by phone and other ways… so it is not a technology issue, but more of a patient needs issue. Ask any practice… they’ll confirm this.
So…. some of the design of the system reflected these concerns and fears. Some design decisions were useful, and should be retained. For example, messages from patients concerning schedule changes go to the Scheduler, not to the doctor. And some providers have assistants review *all* messages to triage them, first. But you’re correct… a character limit is not evidence-based, and actually consumes more time rather than saving time, since it forces multiple separate messages to be read by the provider, who must try to piece things together, and probably gets frustrated. A better design would be to eliminate the limit entirely, or to allow an override, such as a button to create more space (only if the “apparent” char limit serves a purpose). Attachments would be great too, though many IT groups (understandably) must be cautious due to malware…
There are so many opportunities for technology to help with communication, and help with understanding. Perhaps someone should point out the liability of *not* allowing complete information from the patient to be shared, because of a character limit. Not helpful!!
I do hope the IT team at Partners pays attention to this problem. It suspect it would be a pretty simple one to fix.
Thank you for your observations and for sharing your frustration… this is important stuff!!
-Jonathan Wald, MD, MPH, FACMI
RTI International
Formerly, Director of Patient Gateway, Partners HealthCare
President, Society of Participatory Medicine
@Jonathan Wald –
They did say (in their reply to my feedback) that the issue would be referred to the committee responsible for the portal.
I don’t have a reference readily at hand, but if memory serves me correctly, the evidence is that portal communication takes about half the time that phone communication takes, and had the added advantage of allowing the patient to share in the documentation (rather than having the clinician have to document both halves of the conversation).
Thanks for this invaluable insider perspective, Jon!
I can’t help but notice the parallels between the “pre-evidence” fears here, and the same in the pre-study OpenNotes survey. I think its not unfair to say that in each case clinicians basically felt “Be careful – you can’t trust patients not to be a problem and waste our time.” As you say, this was without evidence … except anecdotes, which of course clinicians are trained to avoid.
Needless to say, I’m so glad to hear reality seems to be winning.
When Partners removes the 1500 character limit, then I would be willing to say that reality seems to be willing. I’ll withhold judgment for now.