Physicians are understandably concerned about being overwhelmed by emails if they provide an option for secure messaging. As healthcare transforms, financial incentives have a big effect on the willingness to take on what many perceive to be “more unpaid work” (forgetting the fact that playing voicemail tag is also unpaid and frustratingly inefficient). Interestingly, the physicians who have given out their phone number or enabled secure email (without remuneration) haven’t found they are overwhelmed by any means. In the case of the groundbreaking Open Notes study, many of the doctors just heard crickets.
Health primarily happens outside the doctor’s office—playing out in the arenas where we live, learn, work and play. In fact, a minority of our overall health is the result of the health care we receive. If we’re to have an accurate picture of health, we need more than what is currently captured in the electronic health record.
That’s why the U.S. Department of Health and Human Services (HHS) asked the distinguished JASON group to bring its considerable analytical power to bear on this problem: how to create a health information system that focuses on the health of individuals, not just the care they receive. JASON is an independent group of scientists and academics that has been advising the Federal government on matters of science and technology for over 50 years.
Why is it important to pursue this ambitious goal? There has been an explosion of data that could help with all kinds of decisions about health. Right now, though, we do not have the capability to capture and share that data with those who make decisions that impact health—including individuals, health care providers and communities.
The new report, called Data for Individual Health, builds upon the 2013 JASON report, A Robust Health Data Infrastructure. It lays outrecommendations for an infrastructure that could not only achieve interoperability among electronic health records (EHRs), but could also integrate data from all walks of life—including data from personal health devices, patient collaborative networks, social media, environmental and demographic data and genomic and other “omics” data.
There is a growing group of articulate and engaged patients committed to getting access to all their medical information in order to be better positioned to work collaboratively with their clinical teams. Published studies like the OpenNotes project have consistently shown significant benefits and a lack of serious problems. Health care systems are slow to change and just beginning to understand both the need and value to this more transparent and collaborative approach.
My institution, for example, is not ready (or even interested) in anything approaching opening chart notes to patients. In fact, although our secure portal will be launched in the near future, there was some resistance to making even problem lists, medication lists, lab and x-rays available through the portal.
That need not prevent individuals from contributing to change. A few years ago I began providing every patient with a copy of their office visit note as they left the office after their visit. The intent was for us to do the assessment and plan collaboratively and make sure they have a copy of our (collaborative) plan. Patients have been very appreciative, and use it to share the assessment and plan with family and consultants, and as a reference. A few bring it back at the next visit with notes on it about what they did and what happened.
To the objectors who say that one cannot be honest in a note if the patient is going to see it, I say: balderdash. (Actually, what I say is much stronger…) For one thing (the smaller point) the patient is already allowed to see it if they but ask. More importantly, this argument depends entirely on the principle that the clinician knows best and needs to keep secrets in the interest of the patient. What I have experienced is a variation on the advice I got many years ago regarding relationships: if it’s important, then it’s important enough to be open about and deal with. If you aren’t willing to deal with it openly, you are not allowed to save it up and spring it on your partner (patient) later.
Would allowing patients to read their mental health notes provide more benefits than risks?
In a recent article in JAMA my colleagues and I argue that it would. While transparent medical records are gaining favor in primary care settings throughout the country through the OpenNotes initiative, there has been reluctance to allow patients to see what their treaters say about their mental health issues. While this reluctance is understandable and deserves careful consideration, we suggest that several benefits could result from patients reading their mental health notes.
First of all, accuracy would be enhanced by allowing patients to cross-check what their clinicians say about their symptoms, medication doses, and so forth. Second, allowing patients to review assessments and treatment decisions privately might help to promote a richer dialogue between patient and clinician. Third, patients might learn that their clinician sees them more as a complete person, rather than as a collection of symptoms.
Many patients silently fear that their treater “will think I’m crazy/whining/lazy/boring”; seeing in print that the treater does not see them that way—and in fact recognizes and documents their strengths—can be an enormous relief and might therefore enhance the therapeutic alliance.
Clinicians have their own worries about transparent mental health notes that must be considered. Will patients feel objectified by the medical language commonly used in documentation? Will they break off treatment if they don’t like what they read? Will too much time be spent wrangling over details of what has been documented? Will vulnerable patients be psychologically harmed by reading their notes? Although our article briefly addresses these issues, only a trial of transparent mental health notes will provide the data needed to assess them.
Such a trial has just begun at the Beth Israel Deaconess Medical Center in Boston. Culminating many months of careful planning by my colleagues in the ambulatory psychiatry clinic, the Social Work department, as well as the OpenNotes team, we began a pilot project of transparent notes in our psychiatry clinic on March 1. So far almost all clinicians have chosen to participate in the project, and have identified 10% of their caseloads to be included. It’s too early to gauge results yet, but we hope to more fully evaluate the effects of making mental health notes fully transparent to our patients.
Michael W. Kahn, MD is an assistant professor of psychiatry at Harvard Medical School and Harvard Medical Faculty Physician at Beth Israel Deaconess Medical Center (BIDMC).
In it’s broadest definition, a portal is a doorway from one place to another. On the internet, a portal is a site that has links to other sites. In health care IT, the term refers to a feature of an electronic medical record that gives patients the ability to see parts of their medical record.
In each of these definitions there are two important things that are consistent:
1. To access what’s on the other side, a person must find the portal.
2. What is on the other side of the portal is not controlled by the person using it.
This is very important in the area of my concern: health care IT. Our old friend “Meaningful Use” includes the requirement that the EMR system must “Provide patients the ability to view online, download, and transmit their health information.”
In case you’ve forgotten (deliberately or not), “Meaningful Use” is a program to encourage use of EMR by doctors, paying them real cash money if they meet the prescribed requirements. The main way EMR vendors accomplish this provision is through the use of a “patient portal.”
So are portals the answer to patient engagement via online tools? Are they the answer to e-Patient Dave’s demand to “Gimme My Damn Data?” I don’t think so. They may be a step in the right direction, giving people some of the information they need, but there is still a wide gulf between giving someone a cup of water and ending a drought.
In a few days, I will be releasing the most controversial healthcare project I have ever worked on. But you do not need to take my word for it. I will be releasing a completely new healthcare data set. That data set, which will remain a “Mystery Data Set” until its release to the healthcare data scientists attending Strata RX, should completely revolutionize the way we think about healthcare delivery in the United States.
This mystery data set is the first real outcome of the Patient Skunkworks project. Patient Skunkworks is a new way for me to try and create high-impact but low-profit software projects. This is part of a new Not Only For Profit software development model that I have been working on. The new company forming to do this work will be called Not Only Development.
I will be releasing this data during the last keynote on the first morning (Oct 16) of the 2012 Strata RX conference. There is simply no way, in a single keynote, to even begin understanding all of the ways that this data set will be leveraged to improve healthcare. More importantly, there is really no way to adequately explain why I would choose to give away such a valuable and dangerous data set.
To help people digest the implications of this data set, I will be writing two articles about the data set. This one, before the release which helps to explain the underlying motivation behind the release, and another one after the release explaining what the data set is, and how I think it can be leveraged.
I am releasing this dataset because I believe that the only way to solve the problems in healthcare is to embrace a radical openness with health data. Healthcare data, with the exception of patient identity data, belongs in the open, in the sunlight. When used correctly, I believe that healthcare data should make patients feel empowered, and everyone else in the healthcare industry uncomfortable. I believe that patients deserve deep, dangerous and real access to data. I think when we start talking about how data might actually be dangerous for patients, its just a sign that we are “doing it right”. I call this concept Radical Access to Data (and yes, that recursively spells “RAD”).
A few years ago, Tom Delbanco and Jan Walker pitched us with a simple idea: Patients should routinely be able to see the notes that physicians write about them. Now it’s true that we all have the legal right to see these notes, but obtaining them is anything but routine. The process involves phone calls, faxes (sic), duplicating fees and all sorts of other demoralizing steps. The net result is that reviewing your doctor’s notes about you is a rare experience.
Tom and Jan said that the physicians with whom they had spoken about this idea were split. Some were interested, some were resigned: They recognized that transparency was an increasingly powerful wave and that the world seemed to be heading this way, and the others thought they were crazy―notes were for documentation and communication among doctors and were never intended for patients. The arguments were of a religious quality―they were about belief and values. The obvious solution was to test the idea and let data help sort it out. Today, with the publication of the study results in the Annals of Internal Medicine, that debate is now illuminated.
One hundred and five primary care doctors, more than 19,000 patients and 12-months of testing at three sites has brought us to some striking findings: Patients overwhelmingly support open notes; they report significant benefits from it; and doctors reported that the effects on their practice have been minor. I encourage you to read the full paper so you get the full context (and do pay attention to the limitations section). You’ll find a number of interesting results. Here are three that I think are especially worth reflecting upon:
1. 60-78% of patients (depending on the study location) reported that they took their medications better. This is self-reported data, so the numbers might be exaggerated, but this finding, along with other results related to taking better care of oneself and understanding one’s health conditions better, suggests there’s a significant potential for clinical benefit.