These may sound like come-ons for the type of product typically hawked on late-night television. But in fact, they’re some of the things people are saying about OpenNotes.
OpenNotes isn’t a product, but an idea: That the notes doctors and other clinicians write about visits with patients should be available to the patients themselves. Although federal law gives patients that right, longstanding medical practice has been to reserve those visit notes for clinicians’ eyes only.
But Tom Delbanco and Jan Walker, a physician and nurse at Beth Israel Deaconess Medical Center in Boston, have long seen things differently.
Their personal experiences with patients, and inability to access care records for their own family members, persuaded them that the traditional practice of “closed” visit notes had to change. So, with primary support from the Robert Wood Johnson Foundation, they launched what has now become a movement.
In 2010, Delbanco, Walker and colleagues led a study in which more than 100 primary care doctors from three health systems began sharing notes online with patients. Patients got secure messages prompting them that the notes were available, and reminders to read notes before their next appointments.
The year is 2020, or sometime in the future when the healthcare system is better, much better. Patients have access to their medical notes, are encouraged to read the notes regularly and ask physicians relevant questions. This is to facilitate patient-centered participatory medicine (PCPM), previously known as shared decision making. In fact, note reading by patients is now a quality metric for CMS.
The CEO of the Cheesecake Hospital Conglomeration, one of the hospital oligopolies, has set up a Bureau for Transparency and Protection of Patients from Complex Medical Terminology. The goal is to risk manage troublesome medical writing that could result in poor satisfaction scores, complaint or a lawsuit.
Mr. Upright (MU) is the Inquisitor General for the bureau. He has called the author (SJ), a repeat offender, to his office to discuss elements of his medical record keeping.
Disclaimer: Any resemblance to future events is purely coincidental. The narration is merely a reflection of the author’s paranoid affect and a tendency to believe in conspiracy theories.
MU: Dr. Jha, you’ve been summoned because your open medical notes do not meet the standards for empathy and compassionate care and seem devoid of a reflection on the complex interplay between social determinants of health.
SJ: Has a patient complained?
MU: No. But that’s what the bureau is trying to prevent. We protect patients from physicians. Actually, we protect physicians from their most dangerous enemy: themselves.
In writing about OpenNotes last summer, I argued that the practice of sharing clinicians’ notes with patients had moved beyond the question of whether it was a good idea (the landmark study published in Annals of Internal Medicine was pretty clear on that) to questions of how best to implement it.
As more organizations adopt the practice, it’s clear that we’re now in a phase of implementation, and experimentation with different approaches and learning. Tom Delbanco, MD, one of the project leads, often compares open notes to a drug — it does have some side effects and some contraindications for some people and some circumstances — and we all need to understand those nuances.
To make it easier for health care organizations to offer the service to their patients, the OpenNotes project team has just released a new toolkit.
The toolkit focuses on two challenges: helping organizations make the decision to implement open notes and helping organizations with all the steps involved in implementing open notes.
It includes a slide deck that lays out the results of the study and makes the case for implementation, a video profile of how a patient and her doctor have used the practice, profiles of the implementations at the pioneering sites, FAQs for clinicians and patients, and tips for clinicians on how to write open notes.
Please check it out and tell the OpenNotes team what you think: is it valuable? How could it be better?
Since HIPAA entitles virtually all patients to obtain copies of their complete medical records at any time, it is always best to write notes with the assumption that patients may read them.
However, as electronic portals provide patients with easy access to their records, clinicians may feel new pressure to be more mindful about how they write their notes. They may alter their approach to or even omit sensitive information to avoid worrying patients unnecessarily. They may try to balance clinical and non-technical language to avoid confusing patients; they may feel they need more time to write notes that patients can read.
They may be concerned about how patients might choose to share their notes, including posting a clinician’s note on Facebook, medical forums, or other social media.
Most doctors in the OpenNotes study found that they generally didn’t need to change how they wrote their notes. Patients did not expect doctors to write notes aimed specifically at them and were grateful simply to have a window into their medical record.
However, a minority of doctors reported that they changed how they documented potentially sensitive topics. These included mental health, obesity, substance abuse, sexual history, elder, child or spousal abuse, driving privileges, or suspicions of life-threatening illness. These are not new dilemmas, but they gain urgency in an era of shared visit notes.
Unless you believe a conversation might harm your patient, a good rule of thumb is to write about things you discussed with your patients (and conversely, to talk about content you will write about). Many clinicians already follow this practice, and some choose to dictate notes with their patients present.
When documenting sensitive behavioral health issues, we recommend trying to describe behaviors descriptively, rather than labeling them or suggesting judgments. We also suggest highlighting the patient’s strengths and achievements alongside his/her clinical problems. This can help the patient gain a broader context within which to consider his or her illness and tackle difficult behavioral changes.
As the fashionistas might say, transparency in health care is having a moment. It made the PricewaterhouseCoopers top 10 list for 2014 industry issues, and there is every reason to expect transparency to be very visible this year and beyond.
Without a doubt, transparency is hot.
Despite this, there is increasing grumbling by observers who say that transparency is complicated and hard to operationalize. We also hear that transparency is “not enough” to constrain costs in our dysfunctional system, especially in the face of provider market power.
The word itself invites skepticism, in that it seems to over-simplify and promise a magical solution, as if daylight will provide health care pricing with a glow of rationality.
As usual, the truth lies somewhere in the middle. Transparency can and will provide information about price, quality, and consumer experience that market participants need in order to better understand the health care system and increase its value.
While this information is surely necessary, we have seen many examples of when it is not sufficient. Clearly, transparency is not the only tool that we need.
Here are a few thoughts about transparency issues for 2014.
Transparency tools will hit Main Street.
Increasingly, consumer-facing tools with various kinds information about health care prices are being created, whether it is okcopay or Change Healthcare. These entries join a growing list of transparency tools from carriers or third-party vendors.
The Robert Wood Johnson Foundation’s Hospital Price Transparency challenge, designed to promote awareness of hospital charge data, had a record number of entrant and the winning submissions are downright inspiring. RWJF also awarded grants for research on the use of price data in health care, including a number of studies of promising transparency tools aimed at consumers and providers.
The field is becoming more crowded, and it is increasingly important to determine the optimal way to reach the consumer with price and quality information.
There will be greater focus on the customer experience.
There is no doubt that the customer experience in health care lags behind the rest of the service sector, and consumers are increasingly demanding responsiveness and convenience in their encounters with the medical profession. The growth of evening and weekend hours, email communications with physicians, and patient portals are all harbingers of a new age where medicine is far more customer friendly.
RWJF’s Open Notes initiative allows patients to share notes with their doctors, while the Foundation’s Flip the Clinic program completely reimagines the doctor patient encounter in the ambulatory care setting.
I’ll admit that the question on the face of it struck me as a bit absurd, especially when juxtaposed with the term “tomorrow’s doctor.”
Tomorrow’s doctor needs to be doing a much better job of dealing with today’s medical challenges, because they will all be still here tomorrow. (Duh!) And the day after tomorrow.
(As for the 21st century in general, given the speed at which things are changing around us, seems hard to predict what we’ll be doing by 2050. I think it’s likely that we’ll still end up needing to take care of elderly people with physical and cognitive limitations but I sincerely hope medication management won’t still be a big problem. That I do expect technology to solve.)
After looking at the related Huffington Post piece, however, I realized that this trio really seems to be thinking about how medical education should be changed and improved. In which case, I kind of think they should change their organization’s name to “Next Decade’s Doctor,” but I can see how that perhaps might not sound catchy enough.
It is as natural for doctors, hospitals, health plans and others to aggressively affirm their “patient-centeredness” as it is for politicians to loudly proclaim their fealty to the hard-working American middle class. Like the politicians, the health care professionals no doubt believe every word they say.
The most accurate measure of “patient-centered” care, however, lies not in intentions but implementation. Ask one simple question – what effect does this policy have on patients’ ability to control their own lives? – and you start to separate the revolutionary from the repackaged. “A reform is a correction of abuses,” the 19th-century British Parliament member Edward Bulwer-Lytton noted. “A revolution is a transfer of power.”
With that in mind, which purportedly patient-centric policy proposals portend a true power shift, and which are flying a false flag?
Falling Short Of Shifting Power
The two most prominent examples of initiatives whose names suggest power sharing but whose reality is quite different are so-called “consumer-driven health plans” (CDHP) and the “patient-centered medical home” (PCMH). Both may be worthy policies on their merits, but their names are public relations spin designed to put a more attractive public face on “defined contribution health insurance” and “increased primary-care reimbursement.
As the instigators of the OpenNotes initiative, we are thrilled that OpenNotes is being adopted by the VA. Prompted by Dr. Kernisan’s thoughtful post , the ensuing lively discussion, and our experiment with 100 primary care physicians and 20,000 of their patients ), we thought it useful to offer some observations drawing both on our experiences as clinicians and on ongoing conversations with clinicians and patients.
First and foremost, we don’t have “answers” for Dr. Kernisan. Our hope is to contribute to new approaches to these sticky questions over time. And, remember that patients’ right to review their records is by no means new. Since 1996, virtually all patients have had the right to access their full medical records. What’s new is that OpenNotes takes down barriers such as filling out forms and charging per page, while actively inviting far more patients to exercise this right in an easier and accessible way.
We think of open visit notes as a new medicine, designed like all therapies to help more than it hurts. But every medicine is inevitably accompanied by relative and absolute contraindications, and it’s useful to remember that it’s up to the medical and patient community to learn to take a medicine wisely as it becomes more widely available. A few specific thoughts:
Dementia and diminished physical capacity:
When a clinician notices symptoms or signs of dementia, chances are the patient and/or family has already been worrying about this for some time. Is it safe for the patient to live alone? What about driving? How and when could things get worse? They may actually be relieved when the doctor brings up these topics and articulates the issues in a note. Moreover, their worst fears may prove unfounded, and reading that in a note can be reassuring. But we need to consider the words we write so we don’t rush to label a condition as “Alzheimer’s.” Being descriptive is often better and more helpful than assigning one word definitions. In itself, OpenNotes reminds the health professional to choose words wisely. That doesn’t have to mean more work, but we believe it can certainly mean better notes that can be more easily understood by the patient. We urge colleagues to stay away from “The patient denies…,” or “refuses,” or “is SOB.”
Abuse or diversion of drugs, possible substance abuse, or unhealthy alcohol use:
These subjects are always tough, and what to write down has been an issue for clinicians long before they worried about open records. Over the course of our experiment in primary care, we have heard stories from patients about changing their attitudes and behavior after reading a note and “seeing in black and white” what their doctors were most worried about. Though substance abuse may seem like a particularly sensitive topic, at least one doctor in our study is convinced that some of his patients in trouble with drugs or medications did better as a result of reading his notes. And while some patients may reject our spoken (or unspoken) thoughts that we document in notes, experience to date makes us believe that more patients will be helped than hurt, and that it is worth the tradeoff.
My first reaction was to be impressed by this bold progressive move.
My next reaction was to feel mildly relieved that I’m no longer a PCP there.
Now, it’s not because I’m against transparency in healthcare, or am suspicious of patient engagement, or feel that patients shouldn’t see their health information without the assistance/gatekeeping/interference of a clinician. Far from it.
It’s because in my own VA practice caring for WWII vets, I used to frequently document certain concerns that would’ve been a bit, shall we say, awkward for the patient to see. Reading about these concerns would’ve quite possibly infuriated the patient, or the caregivers, or both.
So whew, I find myself relieved that I don’t have to figure out how to document (or not document?) these concerns.
Instead, I’ll get to see how my friends at the VA handle these issues.
Wondering what they are? Ok, I will tell you but shh … don’t tell my elderly patients that I may be considering these topics as I care for them.
Six awkward concerns in geriatric primary care practice
· Possible dementia. As a geriatrician, I focus on an age group that has a high incidence of dementia. Which means that when someone starts to tell me odd stories (concerns related to poison are a popular theme, as well as reports that someone is stealing things repeatedly), I start wondering about possible dementia. Ditto if he or she starts floundering with the medications, or starts having other difficulties with IADLs.
Why it’s awkward: Patients and families really hate it when I bring up the possibility that there might be dementia. Many find the possibility of a disease such as Alzheimer’s truly terrifying, both because it’s perceived as a terrible disease, and because they worry about having to leave their homes or otherwise losing their independence. Note that if I’m considering the possibility of dementia, I usually let the patient know during the visit.
Being a doctor isn’t a happy profession in 2012: 3 in 5 doctors say that, if they could, they’d retire this year. Over three-fourths of physicians are pessimistic about the future of their profession. 84% of doctors feel that the medical profession is in decline. And, over 1 in 3 doctors would choose a different professional if they had it all to do over again.
The Physicians Foundation, a nonprofit organization that represents the interests of doctors, sent a survey to 630,000 physicians — every physician in the U.S. that’s registered with the AMA’s Physician Master File — in March-June 2012. The Foundation received over 13,000 completed surveys back. Findings from these data are summarized in the Foundations report, A Survey of America’s Physicians, published in September 2012.
Morale among physicians is much lower than it was in 2008, as shown in the first chart. Five years ago, less than 1 in 2 doctors would opt to retire; that’s up by over one-third. What’s driving doctors toward pessimism are the least satisfying aspects of practicing medicine in 2012, including:
Concerns about liability, 40%
The hassle of dealing with Medicare, Medicaid and government regulations, 27%. Over 52% of doctors said they’ve limited access to Medicare patients to their practices, or they’re planning to do so.
Lack of work/life balance, 25%
Uncertainty about health reform, 22%
Paperwork, 18%. The survey found that physicians spend over 22% of their time on non-clinical paperwork, resulting in a huge clinical productivity loss.
EMR implementation as a “least satisfying” aspect of work is quite low on the roster of concerns, with only 9% of doctors noting that as a prime concern in 2012.
As a result of uncertainty due to health reform, regulation and finance/reimbursement, the percent of physicians who remain independent will drop to 33% in 2013, Accenture forecasts, from 57% in 2000, 49% in 2005, and 43% in 2009. Aligning with a health system/hospital gives doctors more economic security and fewer administrative hassles.