Now Reading: The sustained psychological distress from not sharing information with patients

The title of this post is a riff of a line written by our ancestors in 1991, that I loved so much (see: Now Reading: “Concern that sharing information with patients may cause sustained psychological distress is probably unfounded” | Ted Eytan, MD).

Back then, McLaren, et. al, had decided to stop pleading with the medical profession to stop keeping secrets and just state that it was time to stop.

Now 20 years after that, Department of Veterans Affairs Rockstar in residence, Sue Woods, MD (@suewoods) is going one step farther, by bringing the voices of the patients affected forward.

“I’d like to know, what you think and what you know, and what you’re predicting. So, rather than just write it in there, tell me and then write it”.

The VA Pilot – the most amazing natural experiment in health information technology history

Sue may correct me on this, but I had been bugging her for years to tell the story of the MyHealtheVet pilot, which was the first generation personal health record put out by the Department of Veterans Affairs. It didn’t look pretty. It didn’t allow messaging to the doctor. It was private and secure, though. And it allowed something that no one else did during its time – unfettered access to the entire medical record by patients (via a secure, private portal). I don’t know why it was planned this way, it just was – one of the most amazing natural experiments in the history of health information technology. While every other medical / health system in the United States was trying to understand how to allow patients access to “parts” of the record “some” of the time, the 7464 patients in the pilot group simply had access to everything that was about them.

This paper is the story, from the patients’ point of view of how that went.

I would like to add one story from my own experience, and that is asking not one, but several doctors at the Department of Veterans Affairs during this pilot period about the experience of their patients having full access to everything they did. I seemed to get a shrug here or there, a kind of “they do? Oh, ok.”

While everyone else was working to do the “right” thing in HIT, these patients benefitted from the “wrong” thing

Prior to the era of OpenNotes, it was very much the “wrong” thing to let patients see what their doctors wrote.

That’s where the title of the post comes in – it’s not that we have to worry that letting patients see will cause distress, it’s the not seeing that causes them and us distress. We know that much better now thanks to the OpenNotes study (@myopennotes) (Many blog posts from me about that here) and from the work here.

The “what do we think we’re doing here” thought

In discussing how this research made her feel (see: Experiences with open notes are meaningful and profound, Part I. And started this blog. ), Sue talks about how moved she was in hearing about patient and family caregiver experiences.

When I hear the stories of people/patients myself I see the parallels. The quotes from patients here show the desire to have control and insight into one’s health so that (a) one can be healthy (b) one can leverage their health to live/love/learn better.

Doctors aren’t real gabby and they never tell you everything. Even if you ask questions, they’ll sort of slide around them. They don’t have the time, you know. I found stuff out that I was just amazed at, truly, about myself. [FG4]

Have you ever met a person who wanted to be unwell? I haven’t.

Sadly, they shut off this pilot in 2010, which I think is replaced with something that’s more locked down BUT with Blue Button access, so nearly the same? (I’m asking Sue to add this info in the comments).

Communication is the key and if you can’t communicate with your physician, either electronically or verbally, and this particular vehicle that we had given to us, was to me personally one of the best communication tools that the VA’s ever come out with. [FG3]

I like this work so much because it illustrates the best practice – when it’s not clear what we’re supposed to be doing, just listen to the patients, they will tell you. And if you’re ever unclear that listening to patients is the right thing to do -> read.this.sign.

Thank you Sue for putting this experience together in print, and to the Department of Veterans Affairs for not knowing if you could do it until you did it.

2 thoughts on “Now Reading: The sustained psychological distress from not sharing information with patients”

  1. Thanks, Ted, for describing this as the right thing to do. I wasn’t at the VA when they did the MyHealtheVet Pilot, giving access to most the health record (true, sans secure email and online Rx refill, but HEY, it was a LOT!).  Many people at the VA should be proud for being near first out of the gate — from leadership to informatics champions to consumer and patient advocates and developers. 
    In mid-January of this year, patients can get notes and results of tests and discharge summaries through the Blue Button. This is added to the PHR functions of secure email, wellness reminders, med refill, etc.  When I ask my patients if they looked at their notes, some say yes, some say no. It’s not as simple as it should be…we need way better design..but AT LEAST the data is there, can be viewed, printed and downloaded!  So..we’re at the beginning of the journey of doing the right thing. We need more feedback, and users, to help figure out how to make it better. And figure out how people can use this information to make them healthier and have better health care experiences.
    Sue Woods, MD

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