When I was visiting Group Health Cooperative in Seattle 2 weeks ago, I was involved in a conversation about releasing/sharing imaging results with patients online, as Group Health (@GroupHealth) has been doing for about a year (See: What Group Health Physicians are saying about sharing imaging test results with patients – 1 year later | Ted Eytan, MD). Bob Karl, MD, the Chief of Radiology, kept saying, “What more would you like to know about this non-event.” What he meant was that the fears that patients would be confused/offended/quick to call/email based on having this information were never realized, across 500,000 exams shared so far.
What great preparation for reading the final results of the OpenNotes (@myopennotes) project, whose publication embargo lifts exactly at the time of this posting. Articles are free – grab them and read them yourself.
When I opened the PDF of the original research article, “Inviting Patients to Read Their Doctors ’ Notes : A Quasi-experimental Study and a Look Ahead,” was I uncorking a bottle of champagne or opening a Pandora’s Box?
Answer: The former, definitely the former.
After a year of exposing the full text of physician notes to patients in three institutions, here’s what happened:
E-mail traffic from patients was unchanged; many doctors reported that they did not know whether their patients were reading the notes; and hallway conversations, focus groups, and free-text survey comments suggested that many doctors were astonished by how little effect the intervention had on their practices. Several wondered whether the intervention had been implemented. One comment may best summarize their collective experience: “My fears: Longer notes, more questions, and messages from patients. In reality, it was not a big deal.”
In contrast to the fears of many doctors, few patients reported being confused, worried, or offended by what they read.
As it says in the title, 99 % of patients surveyed recommended that the transparency continue, all while having all the positive impacts that were theorized – sense of self control, understanding, and partnership in visits.
Curiously, between 17 % and 26 % of physicians at the three sites where the intervention happened indicated that they didn’t want to continue sharing their notes, however when offered the chance to actually discontinue, none did.
The new truth: “Concern that sharing information with patients may cause sustained psychological distress is
This study adds the strikethrough. It doesn’t cause us to rethink the patient’s (and their family’s) right to know about their care – that’s already been rethought, they have the right.
It does cause us to rethink the patient/family ability to know about their care in a timely manner. With electronic health record technology, and as demonstrated in this study, “timely” can be as soon as the physician note is signed.
We’ve come a long way since, 1973, when, in 41 states, you had to litigate to see your medical record haven’t we.
As the patient editorial (see below) says, “Today, medicine has discarded the norm of evasion and deceit.” This is good, now our health system can reflect that norm.
Two editorials, one from a physician, a great one from a patient
There are two excellent editorials accompanying the research paper, which I recommend reading. The one written by the physician Carolyn Goldzweig, MD, “Pushing the Envelope of Electronic Patient Portals to Engage Patients in Their care,” interestingly puts the term “patient portals” in quotes, calling out the fact that they don’t give patients all of the information that’s contained in their medical records. Good pickup.
She then goes over the study and talks about how OpenNotes still poses challenges/issues.
I’m going to be honest. In my opinion this editorial was completely blown out of the water by the patient editorial, “A Patient’s View of OpenNotes“
In yet another demonstration of the power of the patient story, author Michael Meltsner draws upon his experience as a child in a family affected by medical deceit – “A father saying nothing about the tumor that inexorably enervated him; a young mother spinning webs of deceit; a son raging against his enforced ignorance when the truth came out . . . as it usually does.”
He then talks about his experience as an adult, with a sudden, serious medical condition, and the opportunity to experience openness.
Besides confirming that OpenNotes study “strongly suggests that they (fears of reduced efficiency) are overblown,” Meltsner discusses the idea that patient involvement “frees doctors from being thought miracle workers or failed miracle workers.”
Embracing (the) Failure (of deception)
This is interesting to me – he states that transparency doesn’t cause suffering as a patient, it alleviates it, AND he believes the same is true for physicians.
I’m inclined to agree with him, as I have mentioned many times on this blog.
Training in the era of HIV plus my specialty (family medicine), taught that suffering was truly optional when it came to (a) keeping secrets from people and (b) not collaborating with the people we were serving.
It was a failure of my profession to believe that deceiving patients and families was healthy for our relationship.
So what next? We could embrace this failure and leverage the technology tools we have to involve people in their care, efficiently, productively, respectfully.
Tom Delbanco, MD, told me a few months ago that he’s going to do this, for the rest of his career (see: “I’ve only been interested in this for about 30 years” – talking with Tom Delbanco, MD and Jan Walker, RN, MBA about OpenNotes | Ted Eytan, MD)
Regina Holliday (@ReginaHolliday) and I will also talking about this when we’re on stage at our joint TEDx talk next month at the Henry Ford Innovation Institute (@henryfordideas), where the theme is, “Embracing Failure”.
So….it can be done technologically, the physicians are impressed at the lack of negative consequences, and this experience seems to be repeated throughout the medical world (see Dr. Karl’s comments above).
These are all good reasons to move ahead with transparency.
Thank you, talented researchers, institutions, and Robert Wood Johnson Foundation Pioneer Portfolio (@pioneerrwjf) and (@rwjf) for confirming that “because our patients want it” is one of the best reasons there is.
Comments and thoughts welcome, of course…