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.
I have found that it changes the nature and quality of conversations about difficult topics. First, it means I have to be objective and neutral about the issue, separating ‘my’ stuff from the mix. I can’t get away with labeling a patient in my chart as a symptom magnifier or minimizer, having poor insight into their contribution to the problem, describing pain that does not fit with the setting or findings, making poor choices, non-compliant. Instead I have to describe what I am seeing and why I find it important or of concern. This generates good (and trusting) conversations – and progress. More than a few patients have commented: I like that you put that on the table – I can tell when my x-ologist isn’t being straight and it pisses me off. Clinicians who think patients can’t tell are deceiving themselves.
I have not found psychiatric or social issues to be much of an exception. In fact, I have been surprised at how often this approach has been the key to successfully addressing psychosocial issues.
The biggest challenge has been the patient with a sensitive problem (think about a 16 year old there for ? chlamydia) whose friend or relative may be in the waiting room. The solution has been simple: “Don, just to be clear, I usually give patients a copy of the note we do, but if you’d rather not, just say so. Or I can print it and go get it and give it to you here instead of at the front desk.”
There have been some issues. A few consultants complained that they are getting pressure from my patients to do the same. (I simply said, tell me if it is a big problem and I will send my patients elsewhere. That was the end of it.) I feel obligated to spend time every morning before my day starts ‘cleaning up’ the chart. The pre-visit work actually serves two purposes, and while it is work, I can’t imagine NOT doing it. I can review the reason for the visit, collect and copy/paste or abstract important pieces into the note (this helps us at the visit and the patient at home later), find errors, clean up (remove the penicillin from last year’s strep throat from the med list), and look for things for which the patient is eligible (mammogram, TDap) or problems that have been lost to follow up (gout, on allopurinol, no creatinine or uric acid in 18 months). This work significantly improves my ability to focus on the patient and our work during the visit.
And, I would be remiss if I failed to mention accuracy. In addition to narrating what I am typing so patients can correct it (“No, the pain started two weekends ago, not last weekend.”) patients call to fill in the blanks or correct errors. Lots of great family history and details about previous medical events become part of the record.
From my perspective, framing it as whether or not the record/note is open misses the point. The point is, the collected information, assessment and plan that the patient and clinician are basing diagnosis and treatment on should be used as a collaborative tool not as the clinician’s private record of why they did what they did (TO the patient). That’s called a diary, not a medical record.
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Information is power. I have often gone to my doctor and been asked what past doctors have done for certain issues, which medications I have tried, and so forth. I usually have to reply that, for the most part, I have no idea. Knowing more about my own health history (from a doctors notes and treatment plan) will help me get better faster.
http://www.harrisonmedical.org/
Sharing health information has been painfully slow. I would love to see this more “mainstream” as it truly has many benefits. We just need to get the right security measures in place first. Let’s see how that goes!
I continue to be amazed when consumers/patients who use our MedKaz Green Drive® (on which all their records are aggregated from all their providers) tell us that certain doctors and hospitals refuse to give them copies of the their records.
When they ask what they can do to force their provider to give them their records, we tell them, first, that they are entitled to them by law (HIPAA); second, that they should tell their recalcitrant provider that they will file a complaint with the HHS Office of Civil Rights.
Personally, I don’t understand why any provider would resist giving a patient a copy of his or her complete record. At the very least, it gives the patient a chance to better understand his or her issues and to correct mistakes (a UK study a year or so ago found that 30% of progress notes contain mistakes; my own records mistakenly indicate I have a history of asthma, hypertension and diabetes). Aren’t all providers concerned that mistakes in their patients’ records can lead to serious mistakes in care?
@allan:
I agree fully that the EHR as currently configured often presents more barrier than benefit for both the clinician and the patient. FWIW, I find that an approach like that described above by Dr Duvefelt (hello Hans) allows us to do a pretty decent and useful job of (1) HPI; (2) Social information; and (3) Assessment/Plan.
It is not rare that I tell patients as I ‘power through’ forms that ‘we have some housekeeping to do here, in order to keep the billing office and administrators happy.’
I have no problem with what Hans or you do personally. I only have a problem if we use a top down approach instead of the more organic approach. We have seen the results of the top down approach and they are ugly.
I graduated from my Family Practice residency in 1984. I know what you’re saying. But I’ve got 15 minutes per patient, 8 hours a day, 5 days a week, and an EMR, and my current method is the one that works now.
Hans you should use the method that suits you best. The mandates and top down thinking only destroy medicine as an intellectual and healing pursuit. It creates interchangeable widgets that can only manage interchangeable disease states. That is good for the average patient who fits into the scheme, but terrible for the many that fit outside of it. It is the latter group that are the most difficult to treat and that need medical care the most.
I was an Internist with a subspecialty though I preferred and therefore practiced predominantly internal medicine. My hours were substantially longer and did not have hospitalists to care for patients that needed help in the off hours. That was still my responsibility. My patients were mostly extremely ill with multiple major diseases and that meant they could not be treated like widgets successfully.
I watched the costs climb over the years due to top down policies while I watched our abilities as physicians wane. Today as a patient I am shocked at what I am seeing. Medicine has lost a lot of its memory and that is costing a fortune.
Hi Peter,
Like Peggy Kriss, I agree that writing the chart note with the patient is very powerful. I sit down next to the patient and show the results and the flow sheets on my laptop and I speak out the words that I type and say out loud the boxes I click. My institution is just starting to put the basics on the portal and there is no policy to provide the office note but I often provide one, even do a yellow highlight of medication changes etc.
Hans perhaps I come from an older generation, but my notes since the 80’s combined computers with hand written notes. Communication was done though various methods. I sought the essence of a problem and the compilation of reliable facts. My notes contained all sorts of squiggles and notations that permitted me to rapidly understand the context of an office visit that might have occurred a decade or more ago. The computer note doesn’t do so and provides a novel rather than the essence of a problem.
Therefore providing that patient with such a note was valueless. The time is better spent communicating with the patient. With difficult patients (both personality and disease wise) I would provide a computer printout of medications and diseases along with a verbal and written explanation. The medication sheet along with known allergies was frequently handed out sometimes with hand written comments. One could always get the notes. That is the law.
Today the EHR is so time consuming and forced upon the physician that one has to create a bland note that doesn’t communicate essence, rather it communicates volume. I didn’t see patients benefiting so much from such a note and as a physician I had to read volumes sometimes erroneous due to pre-fab notes.
Of course the benefits do differ from one specialty to another as does the best way to manage patient communication. People should recognize that today (unlike years ago) specialists stick to one area of the body. So the note is quite different and limited from that of a generalist who deals with every area of the body which is a difficult and voluminous task made more difficult with EHR’s and other specific requirements including availability of the exact note for the patient.
With all the variability:
Mandatory: Bad
Voluntary: Good
Strive for organic changes
I agree that the bigger ”point” here is that the session becomes more of a collaboration when the note is written from the perspective that the patient is likely to read it. In my clinical psychology practice, I find that my patients feel more involved in the learning and healing process. At the end of the session, when I ask my patient to put in words what he or she has learned or what was most helpful, we both benefit. The patient gets an opportunity to synthesize the session impact and I get insight to his or her experience of the session. We both get a chance to clarify our view of the information, assessment, and plan.
Peggy, what a great example you set! Thank you.
“That will be possible once enough of us are providing notes to patients to provide a real choice.”
I should have added this. Does that mean you favor force rather than voluntary action?
Force? It is already a matter of law that the patient has full access.
Right Peter. The law already provides a right to the patient, therefore, it matters not whether or not “enough of us are providing notes to patients to provide a real choice.” The patient can always legally get it. The point, unless you are advocating force to make the physician the active party in the release of records, is moot.
@allan:
That will be possible once enough of us are providing notes to patients to provide a real choice.
Loads of physicians are willing to provide notes. Patients need to ask if that is what they want. By law they even have a right to the notes so I don’t think this problem is a big one. Physicians have a lot bigger problems to deal with.
Unfortunately with all the EHR’s and desires such as you present the physician note is becoming intellectually dishonest and isn’t targeted to the treating physician. Errors are copied from one note to another and certain notations are completely left out of many notes.
We are developing reams of paper that become less useful where the physician moderates his notes to meet all the forces surrounding him.
I have no problem with note sharing, but why not let each professional make his own choice. If the patient isn’t happy then he can always change doctors.
Voluntary: Good
Mandatory: Bad
@BobbyGvegas: Error identification and correction have been among the important positives I have experienced.
@LeoHolmMD: Perhaps, if we (clinicians) began routinely sharing both writing and using these notes with patients, there would be more incentive to make them meaningful.
@Naomi Price: I would take it a step further. The team does not ‘include’ the patient, but is (or should be) organized around the patient.
Peter
U betcha. Thanks, Peter.
Doctors et al need to get over themselves. The healthcare “team” includes the patient. You might even find you’ll learn more from your patients, thus helping other patients. You’ll find much more respect, too.
I think OpenNotes will help patients to recognize what an unusable meaningless disaster their record has become. It will also highlight the amount of govenment intrusion carried out by the Meaningful Use program.
My last two primary docs gave me my charts in full. The older one on paper in the folder (I still have it), the latter in a set of progress note .rtf dumps on a USB drive.
I had to laugh (painfully sometimes) at some of the errors I found. Then there was the HIPAA violation of someone else’s — fully ID’d — radiology report ending up in my EHR chart. Groan…