The opening anecdote of the e-patient white paper tells of a patient who impersonated a doctor in 1994, to get his hands on an article about an operation he was about to have. He got busted. Two years later episode 139 of Seinfeld had something similar – Kramer impersonates a doctor to try to get Elaine’s medical record: (Click to watch it on YouTube; they won’t allow embedding on other sites.)
It aired October 17, 1996. It was a turning point in American healthcare: eight weeks earlier the Health Insurance Portability and Accountability Act (HIPAA) had been signed into law, but the full regulations had not yet been written, so when this aired Elaine did not have a legal right to look at her record.
Today she does, though as we’ve written here (sample post from January, & comments), it’s often difficult. Plus, HIPAA regulations allow 30-60 days for providers to deliver, and states can set whatever price they want for the copies. (Regina Holliday was famously told her husband’s records would cost 73 cents a page.) But at least there’s a legal right.
Now, the Robert Wood Johnson Foundation (RWJF) is funding a study called OpenNotes to explore taking it a big step further: what happens if patients can see, online, every last bit of what their doctors wrote? Do doctors get overwhelmed with questions? Do patients freak out when they read the ucky medical words that doctors write? Does the world go to hell in a handbasket, as some have worried aloud?
A year ago the Boston Globe voiced those concerns in the lead of an article announcing OpenNotes. Shades of Elaine:
One doctor wrote that a patient was acting paranoid. Another typed that she had ordered tests to make sure a patient didn’t have cancer. Such notes, written in a patient’s medical records after an appointment, can be candid and blunt – at times more so than doctors are to patients face-to-face.
Amid the national push to computerize medical records and make them more open to patients, one of the most intense areas of debate is whether patients should be allowed to see their doctors’ notes online.
It’s taken a year but this week OpenNotes went live. The press release starts:
With patients across the country voicing a growing desire for greater engagement in and control over their medical care, a new study involving patients in Boston, Pennsylvania and Seattle will examine the impact of adding a new layer of openness to a traditionally one-sided element of the doctor-patient relationship—the notes that doctors record during and after patients’ visits.
Funded through a $1.4 million grant from the Robert Wood Johnson Foundation (RWJF) Pioneer Portfolio—which supports innovative ideas and projects that may lead to important breakthroughs in health and health care—the 12-month OpenNotes© project will evaluate the impact on both patients and physicians of sharing, through online medical record portals, the comments and observations made by physicians after each patient encounter. Approximately 100 primary care physicians and 25,000 patients at Beth Israel Deaconess Medical Center (BIDMC) in Boston, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Seattle will participate in the 12-month trial.
Beth Israel Deaconess?? Why, that’s the hospital where I see my primary Dr. Danny Sands! Not surprisingly, he volunteered to be one of the 100 doctors, and I volunteered to be one of the 25,000 patients.
I spoke this week about the project with RWJF’s Steve Downs. My view has always been that of course I should be able to see my records: whose data is it, anyway? But Steve points out, correctly, that you can’t shove culture change down people’s throats, so RWJF is spending big bucks to collect evidence.
To the credit of everyone involved, they’re allowing us participants to blog and chat about our participation: “Somebody might come up with good uses for the notes that we haven’t anticipated.” Hallelujah; that’s Web 2.0 / participatory thinking.
The project went live just before my already-scheduled visit this week with Dr. Sands. I’m writing this before I go online to review those visit notes. If I have anything to say, I’ll say it here.
I encourage you to read those short pieces linked above. They’re informative and thought-provoking.
p.s. It’s fitting that this project is funded by Robert Wood Johnson: they also provided the original funding for our founder “Doc Tom” Ferguson to write that white paper. And look where we are now.
Glad to see progress in this area. OpenNotes will undoubtedly open some eyes up! The sharing of this information will not only benefit patients but benefit pharmacists and other health care professionals by giving them a greater perspective on a patient’s health care status. In my experience this sharing of information with other health care professionals is often overlooked. As mentioned, physicians can often times be “candid and blunt” in the comments made in patient charts. Hopefully OpenNotes and similar projects will remind physicians to be thoughtful in what they write. It will be interesting to see what changes take place when they are held accountable for what goes into patient charts. I have seen some comments in charts over the years that border on inappropriate and even a few that were down right stupid! Just like some people need to remember to “engage their brain” before opening their mouths, there are a few physicians out there who may need this reminder to think before they write. I would hope that this project would lead into sharing other notes from nursing or other auxiliary medical personnel as well.
Glad that this progress is happening in the digital age… If we were to rely on handwritten notes it would require the expertise of a pharmacist like myself to decipher what the doctor had written.
Any idea how notes relating to psychiatric care will be handled?
Hi Pieter –
This project only involves primary physicians, so detailed psych notes aren’t likely to be involved.
Nonetheless, in the discussions I’ve seen about open notes, psych is recognized as a special area. I can easily imagine a significant difference between a patient & physician on mental issues.
A big one that springs to my uninformed mind is alcoholism, where denial is common. Another is paranoia. Etc.
My personal opinion is that the whole idea of collaborating on notes is predicated on collaboration in the first place: if there’s no sense of partnership, it changes the whole nature of Party A looking at the work of Party B.
Hmm, I wonder if it would be useful to position each relationship in this study on a scale from strongly cooperative to strongly adversarial. Hm. Better yet, ask both partners, before and after?
Funny, I took a pre-study survey a month ago, but I don’t remember what was in it. :)
Makes sense. Although collaboration isn’t always present, even outside of psychiatric care. Clinicians often make decisions on behalf of their patients (eg critical care) using what we understand of their value framework as a guide.
I’m now also thinking about patients that have been offended at the use of term “obese” in their medical records and a proliferation of complicating euphanisms.
Where the patient will go to understand the thoughts entered into the notes will be another discussion. Ideally the author of the notes, but this won’t always be the case. Clinicians don’t have the resources to address all the questions adequately. Maybe they could better develop their FAQs for their regularly used treatments linked to the patient’s profile.
The explicit thought processes may also go some way towards encouraging clinicians to explore evidence (or lack of evidence) behind certain practice behaviours. This could have the flow on effect of introducing evidence based practice to their patients and showing them why they weren’t prescribed antibiotics for their sore throat.
Pieter,
Yes, exactly: in the discussions I’ve heard about patient access to medical records, two things commonly cited are medical terms that mean something different to lay readers, and abbreviations that mean something different.
This has all been discussed elsewhere but we might as well catalog examples here for ready reference.
The most-cited semantics issue is, as you say, “obese.” To most people it means “grossly fat.” To a clinician and a medical record it means “outside of recommended limits.” Here’s my doctor and me – he says I’m obese, and medically I am, but most citizens wouldn’t think that.
A commonly cited abbreviation is SOB, which means Shortness Of Breath to clinicians and means something entirely different to citizens.:)
I think every patient & caregiver who’s waded into medical wording has needed to learn vocabulary. As patients become more actively engaged in their care and records this may evolve, or not … that may become part of the study: if a doc knows the pt will be referring to these notes AFTERWARD, will the vocabulary evolve??
I learned that cerumen is ear wax… is it more precise to say ceruman?
Importantly, some enterprising healthcare providers are learning to attract customers by being more user-friendly in their language.
IMO it’s a grand grand thing to be exploring.
don’t patients already have the right to see their physician’s visit notes?
I’m not certain of the full legal definitions in the HIPAA regulations, but my impression is, yes. But it’s not required online. (In many cases the data doesn’t even exist online – it’s all paper.)
no, physicians aren’t required to make their notes available online. that would certainly be more convenient for patients. but i do think patients already have the right to see them.
No one has mentioned the likelihood that doctors may NOT include info in notes under certain circumstances, perhaps not wanting those notes examined at a later time, by the patient, ie the SOB or obese issues as above, but in a lawsuit or such. For example, if the diagnosis seems delayed or wrong, those notes could act as “evidence” of the doctor’s ineptitude or dismissal of certain information, failure to recommend a treatment or test. How do we get the doctors to be thorough in writing notes, with the thought they might be harmful to their own position in the future?
Hi Peggy – good to hear from you.
From what I’ve read, there’s been LOTS of consideration of what effect this might have on what doctors put in the notes, including both the social issues and the liability issues.
I don’t know if anyone involved in the project will want to comment, but I assure you those issues haven’t been overlooked. Some smart and thoughtful people are behind this.
The whole discussion shifts if we switch to the perspective that healthcare is about the patient, and the relationship is a partnership, and the notes rightfully should be created as a shared tool for use and reference by the patient and the professional.
The first time I used my visit notes under OpenNotes, I realized I was taking action on something where I might not have, because the note was easy to look up. Details in this post.