The OpenNotes Toolkit

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?

In a recent perspective piece in the New England Journal of Medicine, OpenNotes study leaders Jan Walker, Jon Darer, Joann Elmore and Tom Delbanco write that they anticipate that providing open notes will become the standard of care.

With institutions like Beth Israel Deaconess Medical Center, Geisinger Health System, Cleveland Clinic, Mayo Clinic, the VA Health System and several others offering open notes, they estimate that two million people now have access to the notes their physicians write about them.

The deliberations of the HIT Policy Committee are also revealing:  while the committee declined to make the provision of open notes a requirement under Meaningful Use Stage 3, their report indicates that they gave the idea serious consideration and only held back because they felt it was too early to prescribe the method for implementing open notes.

In short, there’s an increasing sense that opening up clinician notes to patients is inevitable.  It’s our hope that the new toolkit will make it easier for all who are curious about the practice to assess the idea, sell the idea, and bring it to fruition.

Steve Downs (@stephenjdowns) is the Senior Technology and Information Officer, Robert Wood Johnson Foundation.

58 replies »

  1. As a patient I think the Open Notes program is outstanding. I have just
    returned from a week in the hospital. Both I and my daughter are extremely pleased to be able to learn every day the results of tests done the day before whether good or bad. There is no speculation about the future in the notes I have seen. But by reading the notes I can prepare questions based on the actual facts to discuss with the doctor when we meet.

  2. Actually, outcomes are not simple.

    This is esp true for frail older adults, but I’m sure it’s true for younger patients as well.

    Part of the problem with healthcare is that we’ve historically let doctors dictate what outcomes matter.

    Often doctors shower medications on patients, because there is supposedly a mortality and morbidity benefit. OpenNotes and other aspects of participatory medicine can help us shift to an environment in which we agree on goals with our patients, and give them lots of opportunites to realign care with their needs and preferences.

    I do think you’ve raised interesting points, but as usual I vigorously agree with Rob and Peter E.

  3. You are absolutely right. I just think it’s a bit “old school” to say that patients should be subject to it. Maybe we’ve gone too far with autonomy in this country – perhaps people “can’t handle the truth”. It will be interesting to see how it all plays out.

  4. It’s hard to refute anything you have said because they are truisms. Except they do not apply to open notes in particular but communication in general. In that case you make my argument far more eloquently than I do.

  5. Clinicians and their clinical honesty about the assessment of the patient. Just because you don’t see a purpose to lack of honesty doesn’t guarantee that honesty will occur.

    It’s like saying “I see no reason why anyone would attack you at 2 am in the morning in a lonely street so you are perfectly safe.”

    The prevalence of unintended consequences is not contingent of your imagination ,

  6. Your statement is a moral not scientific one. That doesn’t mean Carl Sagan would disapprove. But his approval would not blur the distinction.

    Outcomes are fairly simple. Reduce morbidity and mortality. Standard for any intervention.

    Remember the onus is on you to show that your innovation works not on me to prove that it doesn’t.

  7. The last two comments, in my opinion, together sum up the most importat points in this discussing: that we as physicians work for our patients, and that the medical record is not our stage on which to perform, but rather are a place of opportunity to communicate information that will enable our patients to get the best possible care. We serve. The patient is not just something for us to write about; they are, and should always be, the reason anything is done in the exam room and in the record. Well done, Peter and Sandra!

  8. Peter, Yes I know what you meant – I was calling this out (hopefully not in a critical way). A few months ago I spoke to a former colleague who said they now had a system for sharing notes with patients but they can “hide” notes if they think it’s appropriate. I know what clinicians mean, but I think it’s more an artifact of the past (i.e., traditional roles) than something that really makes sense. When I was working in a clinical setting, I sometimes cringed at descriptions of patients, especially elderly women. I thought it was unnecessary, not even really descriptive, and disrespectful. Now that I’m an older woman, I can only imagine the description of me in a medical record! Maybe that makes me over-sensitive!

    Bottom line – I think patients can take more honesty than we give them credit for. I know there’s often not enough time for that, but I think they appreciate it when they get it. Just my perspective.

  9. Sandra -> I didn’t mean to be cryptic about honesty.

    My experience (which is just that – my experience) is that writing notes that represented my private take on the interaction was associated with a form of (benevolently intended) dishonesty that was obvious once I started writing my notes ‘out loud’ with patients. It allowed – encouraged – me to have lots of thought and opinions that I never shared, but too frequently acted on.

    Now, I tend to document as the ‘public record’ only those things that are public, in the sense of available both to me and the patient.

    I am still struggling to understand all the implications. There is some loss, for sure, in that some of my speculation is not recorded. This can make it harder for me (or for others) to reconstruct the breadth of my internal dialogue. It feels to me that the loss in complexity and ‘deep medicalness’ of my note is more than counterbalanced by the increased communication and collaboration a shared note generates.

    In an ideal world, I would have both the skill and the time to both go deep and be understandable. My world is less than ideal.

    As a simple example, consider my discussion today with a mother of issues about her 3 year old’s constipation. The difference between her and my education, vocabulary, experience with children, and experience with the spectrum of pediatric GI illness make it impossible for me to imagine writing a note that truly captures what transpired publicly between us and what transpired privately in my mind. Some of my private thinking and feeling I legitimately express during the visit, but there is no way to insert the context I bring (family of origin, study in more than one country and familiarity with more than one culture, college, medical school and residency followed by 35 years in practice, raising children, helping to raise grandchildren) into the 20 minute visit or the note. And obviously, I am guessing at what is in her mind.

    When I write my notes, I am aware that I am unable to accurately capture the patient’s perspective and comprehensively document my perspective. My note is a compromise.

    I think some of the contentiousness expressed by clinicians stems from discomfort about how and where to find the sweet spot.

    Re-reading this before I nail the ‘Submit’ button, I am not sure I got my message across, but I am not sure how better to say what I mean. Push back against me here and help us make some progress sorting this out.


  10. “Reduce clinical honesty.” I’d like to hear a definition of the honesty involved. Do you mean patients would be less honest? I’ve heard clinicians suspicious of their patients’ honesty. Do you mean clinicians being less honest? If so, why would that be? I expect more honesty if I can review the documentation. That’s the case with any bill I receive, and with my financial accounts. And what’s the purpose of either patients or clinicians not being honest?

  11. I doubt that Sagan would disapprove of my use of his phrase. Regardless, there is certainly overlap if not convergence in our approaches.

    Interesting null hypothesis you pose, with four parts – so really four hypotheses.
    1. Could have unintended consequences. I actually see this as a given. The issue is just what they are.
    2. Increase paperwork. Aside from the fact that in my work we would be talking about increasing keyboard work, this is testable and should definitely be tested. Based on my experience, it does increase work. If we could measure the increase, it would be easier to assess whether or not it is worth it.
    3. Reduce clinical honesty. Fascinating. It might. Or it might do the reverse. Again, testable and worth testing.
    4. Egad. What outcomes do we test?


  12. I agree that its better to have more ideas and more failures than fewer ideas and fewer successes. Hopefully, one realizes in the set up that any one idea is more likely to fail than succeed, and success is the signal that emerges from a plethora of noise.

    So yes, it’s good the value of open notes has been systematically analyzed. This is only one part of the scientific rigor. The next part should not be avoided just because the results were published in a high impact paper or the arguable self-evidence of the proposition.

    Thanks for quoting Carl Sagan, one of my favourite authors. But I believe his statement applied to scientific claims masquerading as fact, not moral or ontological statements.

    In other words, if you frame patient’s access to notes as a moral imperative (“it’s obviously a good thing”), it is beyond the remit of science to confirm or refute.

    A less extraordinary claim that might serve as a useful null is this:

    “Open notes could have unintended consequences, increase paperwork, reduce clinical honesty and fail to improve health outcomes”.

  13. “My usual rule, certainly not 100 % water tight, is that the burden of proof (and study design and accompanying type 1 and type 2 errors) lies on those who purport to change.”

    It is hard to disagree with this, as long as one remembers that most medical care issues are neither simple nor even complicated, but complex, and therefore *by definition* not predictable in advance. Learning and progress happen only if and when multiple trials of multiple variations in multiple settings occur, and the results are studied. To me, this translates into: “It looks and sounds as if there is merit to this. Let’s try some stuff and see what works.”

    I would not advocate that clinicians take my way or the OpenNotes system, and port either of these – unchanged – into their practices. My message to clinicians would be: “I’ve found great benefit in opening the note and the documentation process to patient participation, but my patients and I are still learning how to do it. Try it and see what you and your patients can contribute to the conversation.” In short, my ‘answer’ (that what I am doing is an improvement) does not close the conversation, but simply creates more questions about how to do it, what problems it causes, what tools work best, when not to do it, what different ways to do it.

    The best answers are those that create more questions. I’d rather hear ‘that’s interesting’ than ‘eureka’ from investigators. (Stuart Firestein writes about this in Ignorance, well worth reading.)

    FWIW, the failure of checklists to make a dent in Ontario may be an example of what happens when a simple solution is imposed upon a complex problem, rather than adapted and adopted.

    I also think that extraordinary claims require extraordinary evidence. I consider the claim that patients should not have full access to their records, coupled with the ability to contribute and correct, to be extraordinary. They are closest to the action and have the most to gain or lose.

  14. “I love the idea of bringing some academic rigor to the issue, but I am not optimistic. Not everything that counts can be measured and not everything that can be measured, counts.”

    That is correct.

    I cannot offer an answer that covers all eventualities except to say that one must use judgment (or Bayesian analysis if you want to sound fancy) when asking on whom the burden of proof lies. My usual rule, certainly not 100 % water tight, is that the burden of proof (and study design and accompanying type 1 and type 2 errors) lies on those who purport to change.

    Of course, that does not lead to the logical conclusion, or rather it does but should not, that status quo is usually good and change is usually bad.

    But evidence itself is not symmetric.

    In any case, it’s an important epistemological point.

  15. I love the idea of bringing some academic rigor to the issue, but I am not optimistic. Not everything that counts can be measured and not everything that can be measured, counts.

    For example, I would speculate (hypothesize) that taking and recording a history with the premise that it is a collaborative process to develop a shared working document and plan rather than my private memoir of the interaction and my intent would make the history both more accurate and more actionable. That’s how it feels subjectively. Slightly more objectively, reading my notes from 5 years ago and from 3 months ago, they read very differently in this regard.

    I can envision a study where patients are asked to review notes and evaluate them for accuracy of the collected data, usefulness, and on whether or not the note reflects the assessment plan as they understood it. I do not see a way to measure actual outcomes.

    This form Dr Palmer I find dead on: “I guess trial and error and bottom up evolution are the best ways to find a solution.” Unfortunately, medicine is moving away from front line trial and error and bottom up evolution and towards guidelines based (often evidence blind) centralized standardization. This ignores the fact that patients, clinicians and biologic processes are inherently more variable by orders of magnitude than institutional algorithms, and that one cannot have evolution without variability.

  16. Most docs are busy. We are not running adolescent psychiatry counseling sessions that last three hours with juice. When I was in the Air Force and was the medical officer of the day, I had so many airman in my waiting room that I had to immediately triage. “People who think they have a fever, stand over there.””People who are coughing, move to the back.” Then my NCOs would proceed with the thermometers, white counts, etc. You get the picture.

    I don’t mind showing my patients what I have written. They can add subtract or correct. But we simply can’t have long discussions about whether I think there is scleral icterus. “Well, my mother thinks I look yellow, but I don’t. ” ad infinitum.

    Obviously, the patient should contribute to the chart /record. What percentage I don’t know. You would all agree that if he/she wrote the entire chart, that would not be ideal. If the patient sat mute and the doc wrote the entire chart, that would also not be ideal. So, we are just talking about how much patient contribution. I guess trial and error and bottom up evolution are the best ways to find a solution.

  17. Thanks for clarifying.

    One thing I’m sure we will both agree on. The level of communication between providers and between patient and providers leaves a lot to be desired.

    Communication is a skill. Succinct and accurate summary of patient’s history and presenting complaint is a skill. Taking an accurate history is also a skill. MDs are losing (have lost?) this skill. This has created a costly and dangerous information void.

    Attempts to fill the information void will be futile without those very basic skills.

    Nice quote! It gels with Karl Popper’s definition of science: science is falsifiable (astrology is not).

  18. I read that post on KevinMD the day it went up, and figured it would attract the sort of commentary that it has. SouthernDoc1’s contributions via comment box over there (and I believe he’s here, too) are a pretty good representation of the old-school “Doctor Knows Best” thinking in a shrinking contingent of graybeard MDs.

    Peter Elias and Rob Lamberts are clinicians with long experience in general practice, but they’re two of the most forward-thinking, problem-solving MDs I’ve had the privilege to know, virtually or otherwise. It’s not an age thing, it’s a perception thing.

    When I wear my Walking Gallery jacket at conferences and events, I also wear a button that’s the standard red circle with a slash through it, saying “But we’ve always done it this way” – I got that button from a group of nurse informatics geeks who were all mid-to-late career.

    The system is broken. We all have to work together to fix it. No one’s input is more valuable simply because they have MD after their name. That sort of thinking is what got us here …

  19. Thanks for the dialog, Saurabh. I apologize for not making clear that I was responding to all, though my note happened to be a reply to you. I should have posted it as new, at the end.

    I couldn’t agree more that time will tell how it all pans out. Although I have no medical training (just a patient and avid observer), I do understand something about science and the scientific method, including things have unintended consequences, including the best medicines and best policies.

    I’m old enough to recall when seatbelts were retrofitted into the family car when I was a kid, and the years and years of anecdotes about “Joe survived the rollover because he was NOT strapped in, so he was thrown free.” Ultimately it took time before everyone agreed.

    One thing’s for sure – I honor the clinicians who saved my life when I was dying, and I want them to have a good and satisfying professional life.

    I also honor the ongoing dialog and open-minded self-evaluation of the scientific method. In my very first professional speech (at ICSI five years ago) I cited ACOR founder Gilles Frydman: “All knowledge is in constant beta.”

    Thanks again for the dialog.

  20. “At the end, 99% of patient said they wanted to continue. I declare, this has to be the end of concerns that patients aren’t interested.”

    Yes that is the end of that concern, except that concern was not voiced by me at least. So you might have shot down a strawman.

    The points of skepticism (or concern, if you will) from me (I can’t speak for others)

    – the long term effects of open notes on quality of clinical notes, patient-physician relationship, lawsuits in different healthcare environments

    – the actual benefits of open-notes. Ok patients feel empowered. But does it improve outcomes? What are the metrics that capture the benefits of empowerment?

    – the incremental benefits of open notes over highly collaborative clinical environment where excellent history taking is practiced.

    These are not random musings. These are questions that anyone who has observed the long term fate of ideas rolled out after initial success ought to have. I find the absence of such inquiry rather remarkable.

    ” 82-85% of patients said from now on access to notes would be a factor in their choice of provider.”

    That’s certainly interesting. Although I am a huge believer in revealed preferences (not the same thing as stated preferences). I would like to see empirical evidence of this in practice. That would be (more) convincing.

    ” I beg the earnestly skeptical, please rethink.”

    I beg advocates to develop skepticism and think beyond stage 1. It’s intellectually rigorous but worth it.

    PS: it’s ok to say – yes there are some drawbacks such as this, this and this, but it’s still worth it.

  21. I’m late to this conversation and have many thoughts, mostly summarized here in the experiences of physicians Peter Elias and Rob. Here I’ll note one point: medical professionalism demands that we examine evidence.

    Objection to this idea is natural, but that’s what study design is for – to methodically test hypotheses and thus avoid being drawn into impressions and directions that actually don’t pan out.

    The study was not designed merely by academics and policy people but by clinicians with massive clinical experience. For instance P.I. Tom Delbanco was a practicing internist until 2011 when the study was underway.

    Because of the well understood objections voiced in the skeptical comments here, a baseline survey was done before the intervention. The vast majority of physicians thought patients wouldn’t be interested; the overwhelming majority of patients said they ARE interested. So, right there, the well-meaning clinicians have something new to add to their knowledge base.

    I urge earnestly skeptical observers to read the findings (the Research tab at MyOpenNotes.org) but in the interest of brevity I’ll close with this:

    1. 17-25% of docs in the study said they were going to disconnect when it ended. But when they saw the results NOT A SINGLE ONE DID. How many studies have THAT result?

    2. At the end, 99% of patient said they wanted to continue. I declare, this has to be the end of concerns that patients aren’t interested.

    3. And there’s a business impact: 82-85% of patients said from now on access to notes would be a factor in their choice of provider. As medical spending shrinks in the coming years, a provider who welcomes notes access will have a market advantage.

    The horse has left the barn. I beg the earnestly skeptical, please rethink. It’s the nature of science to shift and expand as new knowledge comes to light. I’m sure even MD as Hell wouldn’t hang out a shingle that discloses to patients “I’m mad as hell, and I don’t CARE about the evidence.”

  22. Hi Casey – in case you missed it, interesting discussion going on in the comments responding to this KevinMD post this week: http://www.kevinmd.com/blog/2014/03/confessions-medical-scribe.html

    The original post is about medical scribes, but the comments have veered sideways to the very serious and related issue of inaccurate diagnoses prominently and permanently listed on the Problem List of patient charts, and how virtually impossible it is to remove a dangerous misdiagnosis like “anxiety” from one’s official records.

    One MD (“SouthernDoc1”) responded, in his wisdom: “I don’t see that it’s anything to get so bent out of shape over.” (My best guess: SouthernDoc1 has never had a life-threatening medical condition misdiagnosed as “anxiety” – and then had that word follow his medical records around for the rest of his life…)

    I too would like to thank Tom and Jan for their work on Open Notes, as you say “long after their own rigorous scientific study showed that patients AND clinicians found great value in open notes.”

  23. Agree. I think there will clearly be a segment of the physician population who will resist the collaborative approach to care (and the requisite sharing of data for collaboration) out of reflex. We’ve fallen far, first from the time when our knowledge of facts was special. Patients have quick access to all of the facts I know as a doctor. Docs still resent patients who check Google before calling us (even though most do). We are now falling from our “keepers of the tome” of the health record, and sharing the decision-making with the patient. More and more, docs are being displaced from the roles that gave them pride and status, which causes many to try to put the toothpaste back in the tube. We must move forward. Yes, it must be with care, but instead of finding ways to obstruct the progress we must find ways to shape it better. I’d rather be a hammer than a nail.

  24. I am not a clinical psychologist, but as a family physician, I find that I do a huge amount of work with patients on psychological issues and problems related to their living circumstances, and that there is no clear division between these issues and more clearly medical issues like hypertension or congestive heart failure. (Or even strep throat.)

    I am thrilled to hear your description of your approach, because it fits so well with my experience.

    My approach to patients aims to be as collaborative as I can manage. I believe that my patients are absolutely entitled to understand not just what I am offering as analysis and recommendation, but also WHY. This requires a kind of transparency that I was definitely advised against in training and was uncomfortable with during my early years of practice.

    It gets easier with practice.

  25. I am a clinical psychologist using Open Notes in an outpatient mental health setting for the past year. I start each session reviewing our notes from the previous session, and leave time in our session at the end to TOGETHER write our note for the session. As my clients get more used to the system, they often ask me in the middle of a session to please add a certain comment by a client or me- an important insight, etc. At the end of the session, I often ask a client to summarize the session and I will write down their words in quotes. Then I will add my version of the summary, checking with them to see if I got everything correct, what I left out, etc. This works beautifully, the client gets reinforcement of what was said in the session and feels empowered to be part of the process. In the session summary I will make a note about the presence, if appropriate, of suicidal ideation. I find it very helpful in the note to again check with the client after I type that part of the note- did I get it right? Is there a better, more accurate way to capture how you are feeling, I will ask. It does take time to write the note and I feel strongly that the note should be written within the 45 minutes of our session time. I believe the collaborative note process is an important part of our work- helping the client to feel heard, understood, validated, cared about and clear about the strategies and goals of the therapy. II wrote about some of these experiences in my blog: http://bit.ly/15eYtdp

  26. Thank you for joining this discussion, Dr Kernisan. As with other contributors to this discussion, we take your insights to heart!

    To address your questions: Right now we’re preparing to examine the experiences of far broader groups of patients and clinicians (extending well beyond primary care), and starting also to explore the implications of shared visit notes for areas such as mental health, patient safety and medical errors, medication refills, caregiver issues, and educational opportunities for medical students and trainees. We’re also looking back at our patient cohort to better understand co-morbidities among patients choosing to read notes.

    With respect to age: We saw in our initial studies that both those with high school education or less and the elderly were at least as enthusiastic about open notes as were highly educated folk. We can share also an exciting finding we are analyzing in depth: A high level user of open notes may be much older than one might expect!

    Plenty to learn and share!

    The OpenNotes team

  27. I’m overall for OpenNotes, largely for the reasons that Rob and Peter Elias mention above. I even got my EMR developer to enable it for me (thank you Ben at MD-HQ!) so now all my geriatric consultation notes are available to the family members or geriatric care managers who access the patient portal.

    Major caveats:
    1. My practice being what it is, virtually all of my patients are impaired or otherwise have their care being overseen by someone else. In other words, I’m currently spared from worrying about what my patients themselves think when I assess their abilities and health issues. These notes do work well as a tool to collaborate with family caregivers or care managers.
    2. I have more time to chart than most ambulatory docs do, again because I have an unusual practice set-up.
    3. It does feel like it takes longer to chart if I expect a family caregiver to read the notes, versus a care manager. Avoiding jargon and abbreviations adds up (esp since my patients have a gazillion issues and I write long detailed notes.) Not to say we shouldn’t encourage clinicians to write for transparency, but it can add yet more work to people who already complain of being overloaded. We should encourage clinicians to step up to this challenge, but we also need to provide support and resources (time!).

    Regarding the landmark study, it’s great. And yet, I noticed that the average age of the patients involved ranged from 44-53, and I didn’t see any information on comorbidities.

    So the findings re impact on patient concerns and clinician workload may not be generalizable when OpenNotes is used with an older or sicker population.

    Are more studies in progress, at the VA or elsewhere? The more we learn, the easier it will be to figure out how to make this work well for everyone.

  28. I’ve enjoyed watching this debate unfold over the past few days. Debate is healthy and when the debate is over changes that affect the fundamental nature of the patient-physician relationship, it’s really important. I find the concerns that have been raised in the comments to be real, valid and quite familiar. They are the concerns and the questions that any thinking and caring physician should have. As Dr. Delbanco and Ms. Walker note, the practice of opening up notes is not for everyone and not for all circumstances. Learning about those nuances and how best to implement OpenNotes — so that those who can benefit do benefit and those that would be harmed are not harmed — is the task at hand.

    What’s striking about the questions and concerned raised is that they are similar to what we heard five years ago. The difference is that now we have a rigorous, large-scale published study and a growing body of real-world experience to inform the debate. Speculation about what might happen — good or bad — can be augmented if not replaced by scientific results and the perspectives of hundreds of doctors and about 2 million patients who have participated in OpenNotes. Whether it’s the formal study, the system-wide experiences at the VA, Geisinger, Beth Israel Deaconess Medical Center and others or the personal experience of Dr. Elias, we are far better informed.

    We are still in the early stages — the learning stages — of this practice. There is a growing community of practitioners that are generously sharing their experiences and assisting others in thinking through implementation approaches that address the many concerns that have been raised. Those experiences are reflected in the toolkit and will continue to contribute to future refinements.

  29. ” Some luddites out there are fearful of patients seeing this reality, to be sure”

    To be sure your statement is likely to be correct but it should not lead one to the logical fallacy of affirming the consequent (luddites are skeptics therefore skeptics are luddites).

    “I somehow feel that suggesting this requires “rigorous study” seems like the smoke screen which comes from reluctance to engage the patient in the process”

    It may be but rigor is a discipline that survives its motivation.

    “All I can say is that the more I’ve engaged patients in the process, the more open I am, the better care I give and the more accurate the records are.”

    Communication, communication, communication. No, I don’t think anyone will dispute its importance, and the ineffectiveness of anything that tries to act as its substitute.

  30. I do wonder if doctors fear if patients see the records they will realize how terrible they often are. Some luddites out there are fearful of patients seeing this reality, to be sure. I find my patients quite happy to participate in improving the quality of their documentation and getting that information for their own use with other providers. It is their record. It is their health that is at stake. Unfortunately, most records are only viewed when there are problems bad enough for the patient to come in for care.

    I somehow feel that suggesting this requires “rigorous study” seems like the smoke screen which comes from reluctance to engage the patient in the process. Providers would rather have patients as passengers on their planes than to teach them to care for themselves, give them the tools to make their own decisions. They want to shut the cockpit door and exclude the patient from their own care.

    Are these are the same docs that complain about noncompliant patients, not seeing that patients don’t like to be treated as a commodity in the transaction between payors and providers? Is this why there seems to be a growing adversarial relationship between doctors and patients?

    All I can say is that the more I’ve engaged patients in the process, the more open I am, the better care I give and the more accurate the records are. Will there be negative consequences? When haven’t there been? But giving access to more accurate information seems to pass the “duh” test (which I apply rigorously).

  31. Several points made are notable and convincing arguments that there is a problem but none that cannot be solved by the following:

    – thorough and targeted history, and physical exam which physicians should be doing ( if you’re missing the right nephrectomy on history then it is not thorough enough)

    – succinct communication between physicians. Whatever happened to the “Dear Dr. Overworked, thank you for referring this delightful 88 year old caucasian lady with long standing history of epigastric pain”?

    Open notes seems to generate in physicians a feeling of warmth and fuzziness. Fair enough. Nothing wrong with that.

    Oh and wondering about the unintended consequences doesn’t necessarily mean that one is scared or a luddite. Here are some interpretations:

    – one is thinking beyond stage 1 (a good habit I highly recommend, introduces rigor)

    – one is unconvinced by the idea

    – one is frightened of change and is a change phobic luddite

  32. You asked lots of questions, but this one stood out for me because of a recent experience:

    “Do you believe that patients are unable to view their charts generally, today? What is wrong with the current system? Legal request ==>chart copied==token payment==>receipt of record.”

    I recently cared for a single mother of 3 children under the age of 10, two of whom have some complicated medical illnesses, one of which may turn out to be an inheritable metabolic disorder. Our local community is not really able to meet all the family needs. She quite legitimately asked for copies of all the records on all three kids. She wanted to be really familiar with the contents, check for errors and confusion among the kids (she found many errors, some important) and be able to negotiate around a variety of clinical resources who did not communicate well among themselves. She was asked to pay about $425 for the records and it took her a month to get them

    I would say that our current system can make it VERY hard for patients to access information.

    Peter Elias. MD

  33. There has been lots of philosophy, conjecture and personal opinion on display here. I would like to offer a practical experience.

    I had been in the habit of providing a copy of my office visit note to selected patients, primarily those with complex problems who were going to be seeking part of their care outside our system. I am now nine months into giving a copy of my note to every patient I sed. I believe there have been three exceptions during that time – all three related to patients with issues of sexually transmitted infections whose partners were waiting in the waiting room.

    I have seen truly huge benefits. Correction of both old and current errors alone would have made it worth while. The added information that was generated when patients brought the note home, and either re-read it and re-thought it, or shared it with family has also been important. Knowing that the patient will be able to read the note is a powerful incentive for accuracy and an antidote to fatigue (or system) induced laziness.

    Knowing that I am writing something the patient will read rather than a diary of my private thoughts helps me stay clear, organized, and objective – something my consultants have noted and thanked me for when they receive the notes.

    I have been amused at how many patients thank me for saving the trouble of explaining what the doctor said to their spouse (or brother-in-law the physician). The love to tell me how much fun it is to hand over the note and say: “Here. Read it for yourself.”

    Without question, though, the biggest benefit has been that it has changed the underlying nature of both the visit and the note. I do my notes in real time during the visit with the patient. This includes checking with them if I have accurately recorded what they meant or what we have discussed, and offering to let them sit next to me while I type. (Only some do.) The note is no longer MY record of what I thought in the private reaches of MY mind. It has become a collaborative record of what WE have discussed and decided. Some of my notes clearly say that I see it one way and the patient sees it another. In these cases I check with the patient as I am typing. When I get to the assessment and plan, I run through my/out thought process, the decision we have come to and why, what plan B might be, what we are planning, and why. Sometimes this is simple and sometimes it is a fairly complex collection of steps. This ensures that we are both literally and figuratively on the same page, and allows us to start where we left off.

    It was a great deal of effort in the beginning. I was unprepared for the impact of seeing and hearing what I wrote in charts from the perspective of the patient. I submit that we (clinicians) are tragically accustomed to thinking for our patients, making assumptions, being judgmental, and being sloppy in our thought processes (such as writing what we know we should have talked to the patient about rather than what we actually talked about). So accustomed, that we no longer realize we do it.

    I challenge every clinician who has objected to this during this discussion to look at the notes from their last full day seeing patients, and read them aloud, asking themselves: “How would this sound to the patient? Is there anything here I would not have said or would have said differently if I knew I had to defend it?”

    I can honestly say that I cannot imagine NOT doing this and am embarrassed that it took me so long to realize the value of a truly collaborative interaction and record of that interaction.

    As my mother always said when I refused to try a new food: “You can’t say it tastes bad until you try it.”

    Peter Elias, MD

  34. @Delbanco and Walker

    Are the early adopters using OpenNotes for psychiatry and psychology notes?
    Are they using ONs for drug rehab?
    When they are using ONs, are both docs and patients mutually agreeing on their use in a care contract?
    Are they getting appropriate committee notes–ones that have reviewed the patient’s care (e.g., the internal medicine committee, the infection committee, the utilization committee, etc.)? If not, why? These are quasi-providers themselves.
    Are they reviewing and opening up other appropriate provider notes? E.g pharmacy; nursing; PT, OT, dental? If not, why?
    If there is a discusssion in the Board meeting of the hospital, say about the LOS recommendations of a particular DRG–the one that the patient has–are these discussions to be open? If not, why?
    Do you think that the physician writing notes, if he knows that someone is over his shoulder reading the notes, will write notes in a different way?
    Will that ‘way’ carry more total bits of accurate information than if he is writing notes for the record?
    Will a physician writing as if someone else is reading over his shoulder write in as intimate a way as otherwise?
    Do you think that such a writer will be as efficient in a cost-benefit way as if he is writing for the record only?
    Are these ideas evidence-based? Shouldn’t they be? Do you believe that the patient’s chart is a legal document? Is it the work product of the physician and his responsibility for truth and accuracy? Or is the patient partially legally responsible?
    Do you believe that patients are unable to view their charts generally, today? What is wrong with the current system? Legal request ==>chart copied==token payment==>receipt of record. Do you know what each state is doing?
    Do you see any malpractice risks in handing patient a copy of his hospital or physician’s office record? Would you use the snail mail? Or the Net? How about the net with a password? What if you felt you had to deny such a request (e.g. you have included in the chart an article that says the patient’s chance for one year survival is <5% and the patient is fragile and you are caring), might this fact give your practice a less than desireable stigma?
    If this is such a natural evolutionary change and is so desired by patients and physicians and payers alike, why has it not peeked up before 2010?

  35. No one has yet mentioned the sheer numbers of mistakes are often found in the patient’s records, and which have impact in future treatments. The patient, being involved with his/her care can alert the physicians to the fact and may indeed prevent problems. Case in point is my most recent exam, in which the surgical history notes, “No prior surgical history,” this despite the large scar from a radical nephrectomy. The showed that I am four inches taller than I am, which improved my BMI beautifully, but is thereby incorrect. My final “Diagnosis” is given as “Malignant clear cell renal cell carcinoma”, which is indeed part of my history, but I have been without any evidence of disease for more than nine years.

    Some other doctor reading this report would be rushing me in to get another nephrectomy, but might not be able to ID me from the description…

    That is why I read everything I can about me, and insist that I get every report on every lab, every examination, every procedure.

  36. I hesitate before commenting because I’m Canadian.
    I have no trouble getting my lab reports, and my docs say out loud what they’re putting into my/the electronic record.

    I don’t understand all that’s contained in the lab report, but I can learn as much as I need (via internet and social media) : I know what levels to keep track of. There are other things in my file that are of a sensitive nature, and they’re id’d as such. a

    This is such a vastly different era and environment than with my parents, where secrecy was the status quo.

    It is for this reason (amongst others)I so stand behind OpenNotes.

    But never mind me, my 20 year old daughters expect to see everything that’s written about them.

  37. First, I’d like to say thank you to Tom and Jan, who are still taking flak from folks on OpenNotes long after their own rigorous scientific study showed that patients AND clinicians found great value in open notes.

    The clinicians pushing back in the commentary above are showing the anger/fear/trembling Tom and Jan refer to in their own comment.

    I’ll ask the pusher-backers this: If OpenNotes are such a terrible idea, why is it a good idea that patients have to navigate a metaphorical Bataan Death March if they find inaccurate, and often crazily wrong, information in the parts of their health records they’re “allowed” to see? That’s not hyperbole. I tried for years to get inaccurate info in my parents’ records corrected while I managed their care through end of life. I gave up when they died, but it was *never* corrected.

    My own records about my cancer diagnosis are wrong in places – not in any important ways, but ways that make the records inaccurate for any use in longitudinal population studies about my cancer. Which I’m sure is not preventing their use, but the INFORMATION IS WRONG. Therefore, scientifically useless. I have not, in seven years, been able to get that data corrected.

    So: why the freak-out, kids? The records are already highly suspect. Maybe you’d be ahead of the game if you let us – patients – have a look at your notes about our own care.

  38. I am surprised by this response. It seems a bit retro to expect that patients have such absolute trust that they wouldn’t want access to the documentation of their own or a family member’s care. I think we’re more in an era of “trust but verify” for almost all aspects of our lives. You seem more concerned about lawsuits than you need to be, I think, and you may find that the practice of sharing notes may actually reduce liability, not increase it.

  39. We have to take quite a bit of the blame for creating the OpenNotes initiative (with the help of the Robert Wood Johnson Foundation). So we’ll offer a few updates that refer to some of the commentary above.

    We’ve basically been guided by the metaphor of a new medicine…one that hopefully helps more people than it hurts, one that will inevitably harm some who use it, and one that both clinicians and patients need to learn to use wisely. So far, that seems to be the case.

    The fact that the VA, the Cleveland and Mayo Clinics, MD Anderson (which admits 30,000 new patients with malignancies annually), the Geisinger Health System, and our hospital (Beth Israel Deaconess Medical Center in Boston) are having positive experiences and are involving more and more clinicians and patients daily is likely a good sign. These institutions may be early adopters willing to take risks, but they’re not particularly faddish, from what we’ve experienced and watched.

    What is for sure is that patients love the practice, but remember also that they can choose whether or not to engage in it. Between 60 to 80% of patients read their notes when invited to do so…but by the same token, 20 – 40% choose not to. Most important to us is the clinically important benefit that they report. As examples, we now have many anecdotes pointing to increased patient safety (we’re also getting ready to study that in an organized way), and when about 70% of patients we surveyed tell us they’re taking their medicines more carefully, we take that seriously, even if it turns out to be a five fold exaggeration. Focus groups and interviews after that startling finding are adding a lot of at least face validity to these reports.

    We’re experimenting with making this part of education for trainees, we’re very excited by the potential benefits for care partners and families, we believe it will have many important benefits for pain management and the care of those with mental illness. We’re pretty bullish, but we’re also not naive. We also don’t think the world is black and white. This is complicated stuff.

    One specific response to a question posed to Mr Downs: Our hospital enables clinicians to “hide” individual notes from patients. The rate of such “private” notes is far less than one percent, and what’s particularly interesting is that the rate is diminishing over time.

    Take a look at some of the material we’ve generated in the medical literature (you can find it on our website: http://www.myopennotes.org). And remember, many clinicians entered…and enter this newly transparent world with anger, fear, and trembling. Many tell us also that after they’ve tried it for a while, they believe it really good medicine.

    Let’s summarize with a paraphrase (for the clinicians): Try it, you may like it!

    Tom Delbanco, MD, MACP and Jan Walker RN,MBA

  40. “Trite platitudes are a hobby of mine.”

    I’m glad to hear that.

    Rigor and evidence-based medicine are my hobbies.

    “So you say there needs to be “rigorous evidence” that if a patient has a copy of recent labs, consults, and other medical documentation they are better off than if they don’t?”

    Yes. An idea shouldn’t just me implemented because it sounds good. One has to think beyond stage 1.

    I see no reason why a fundamental change in the system, with its costs and unintended consequences (you may not think there are any but I’d like to see evidence of their presence of absence), should not be put to the task of evidence.

    What applies to a new drug in the market should also apply to major structural changes.

    “As a PCP, I have had to operate “blind” often. Patient goes to the ER, specialist, etc, and I have no record of the encounter.”

    You seem to be making a case for greater integration of and access to medical records. That’s a worthy goal, but not the same issue. It’s worth asking what regulatory barriers prevent integration, why they exist (usually for a rational idea that was extrapolated) and why they can’t be removed.

    Why is there not greater communication between primary physicians and ED and primary physicians and specialists? Or is there?

    Physician communication is not optional If they don’t communicate they are responsible for that failure and no amount of patient note carrying will serve either as an adjunct or substitute for that communication.

    “The average person knows little about aviation, but the average patient does know about what they are taking, how they feel, and what has happened in their life.”

    Indeed. As I alluded to earlier, that falls under the domain of taking a history and doing a physical.

    The system is fragmented. I’m with you there. But the first part of joining the dots is joining the dots between the providers.

    You can give patients access to whatever you want, but if physicians (pilots) do not communicate with one another I doubt you will achieve anything meaningful.

  41. Trite platitudes are a hobby of mine.

    So you say there needs to be “rigorous evidence” that if a patient has a copy of recent labs, consults, and other medical documentation they are better off than if they don’t? I say that, as a PCP, my patients often go to get care that occurs with incomplete information, which results in (at best) repeating tests unnecessarily and (at worst) coming to wrong conclusions. I am sorry, but accuracy of information needs no “rigorous proof.”

    To me, the question is one of whether a patient should be “going along for the ride” in their health care (like on a plane, letting the pilot do his/her job), or if they are better to be active participants. The average person knows little about aviation, but the average patient does know about what they are taking, how they feel, and what has happened in their life.

    As a PCP, I have had to operate “blind” often. Patient goes to the ER, specialist, etc, and I have no record of the encounter. I end up relying on the patient’s recollection, which “rigorous evidence” shows to be unreliable. I believe the patient is the best “interface” between providers, and if they had access to the records, they could share it with me if needed. Do I need rigorous evidence to support the fact that I prefer to know what happened?

    More inflammatory than the term “hiding records” from patients is the fact that most people are charged a signifiant fee if they want a copy of their records. I have yet to meet a person who isn’t angry when they encounter this fee. Does the bank charge for access to your bank records?

    Unfortunately, in our current system, which is largely a transaction between providers and payors, the patient is a supporting actor in the drama, a byproduct of the interaction between the leading characters.

    This is not conjecture to me, since it is my day-to-day existence as a PCP, and since I have changed from the old system to one in which I am employed by the patient. I give them copies of any test I order and am moving toward having them participate in the role of keeping their own records accurate and complete.

    Ah, but that’s just a trite platitude.

  42. It’s called taking a history. There’s nothing terribly innovative about it. It has been around for…about as long as medicine. I believe it’s importance is still taught in medical schools.

  43. “he problems with notes that are NOT open are far, far greater than those that are.”

    That’s pure conjecture.

    Which is not to say you are certainly wrong.

    But “is really far more impactful than any thing negative consequence that may happen in the rare case that information needs to be “hidden” from the patient”. Sorry you need more rigorous evidence otherwise this is just a trite platitude.

    And “hiding records from them” is needlessly inflammatory.

    And yes the burden of proof lies on those who purport to change for the better rather than skeptics.

    Since the healthcare industry loves the aviation industry perhaps it should ask pilots what they think of keeping passengers informed minute by minute of the technical information available at the cockpit, because of course an informed passenger is an engaged one.

  44. The point is that patients are already participants in their own records by our engaging them to ask questions about what is going on in their lives (which is a very large part of the record) and us sharing results and treatment plan based on those results. Right now, however, that process is limited in where the patient can engage in that process to the physician exam room. As a physician you are automatically interested in patient records of their health because we ask them to recount their health whenever they come in. That is what we have limited patient records to at this point: what the patient remembers when they come into the exam room and what they can remember about the plan when they leave. The benefit of open records is that they engage this process beyond the exam room.

  45. What does your question have to do with their record being made open?

    Lets see the psychiatrists opening their patient records for review by all. They will be worthless if anyone and everyone can see them. There will be no point to having a record. Or…there will be two records.

  46. Do you ask the patient if they have changed their medications? Do you ask them what symptoms they are having? Do you want to know if they’ve changed a job, have gotten divorced, or started exercising? Why not have them become part of that process to reduce your work in maintaining an accurate record?

  47. Regardless of whether or not there are some negative consequences (and I am certain there will be), the problems with notes that are NOT open are far, far greater than those that are. Patients are nonparticipants in their own care in large part to them being excluded by hiding records from them. The greatest improvement in care I’ve seen as I open up records to patients is that they are far more engaged in the process of their own care. This is really far more impactful than any thing negative consequence that may happen in the rare case that information needs to be “hidden” from the patient.

    My goal is to make patients participants in the record itself, as they have far more to gain from its accuracy than any other party. Why not let them correct their own demographics or insurance information? Why not let them add medications started by another provider, or remove them if they’ve stopped a medication (with notification to the physician participants)? It’s appalling how inaccurate and incomplete records are in many cases, so why not employ patients to look after their own good in this case?

    When I looked over what % of records would benefit from patient engagement and what % would possibly be hurt, the ratio was huge in favor of benefit. Yes, I think there is definitely areas of risk and concern (and there will be some “defensive charting,” which there is already anyhow), but the benefits far, far outweigh the negatives.

  48. These days if the terms “transparency”, “trust”, “patient- centered” are thrown, the idea is automatically good and could possibly not have any unintended consequences.

    Because to be opposed one must be against transparency, one must be against trust, one must be a dinosaur living in the days when the good surgeon said “I know best, I am your organ grinder”.

    Let’s hope the patient’s subjective assessment of the physician’s subjective assessment of their clinical state do not clash.

    Let’s hope that the physician does not indulge in “defensive” record noting, written in language that neither confuses nor informs.

    Better still, I suggest that that physicians write two sets of notes: the medical and one in which they explain the medical stuff for the lay person.

    And to what end will this serve? Oh, I forgot it will increase transparency, trust and empower patients to make more informed decisions, so that they are the captain of their team not a passive participants.

    This will lead to higher quality, lower cost and help us bend the cost curve.

    How? Well that doesn’t really matter.

  49. Physicians are trained to diagnose and treat, and document their thinking and their care. The ‘do no harm’ is key, yet in that protection, power and control of information is inherently imbalanced. HIPAA protects privacy but also ensures the right for people to have access to their own information.
    As the world gets disrupted by greater consumer access to information and servies, so does health care. Provider should be encouraged, however, because people rely on physician expertise – in spite of their expanding use of the Internet . And for every (rare!) ‘side effect’ of OpenNotes there will be tens of thousands of empowered, engaged and activated patients and caregivers who will pay more attention == to their information = and they will help health care, too. Research is growing and shows:
    Greater accuracy of information
    More completeness
    Higher levels of trust (transparency breeds trust)
    Better quality through patient self-monitoring & tracking
    Better patient experience
    Improved outcomes

    The Veterans Health Administration, after 10 years of piloting opening notes, expanded the Blue Button access to health records through the PHR. Since January 2013, all clinical notes can be accessed, 3 days after completed (and all test results and imaging reports).
    See http://bit.ly/1i1HHmJ
    and what patients think about OpenNotes at the VA:

    Sue Woods, MD

  50. This idea shows a bad imagination. There are so many obvious items in a patient’s chart that should not be shown to the patient–where it becomes quasi-public as she shows it to her family–that this idea must have arisen in policy or academic or government circles…far from sick humans.

    E.g. 1.) Patient has hepatitis C. Patient’s doc takes her case to the hospital pharmacy and therapeutics committee or to the infection committee to discuss interventions. They do not recommend sofosbuvir (Sovaldi) because it costs the hospital too much. Doc reports this negative recommendation in patient’s chart and the reasons therefore, not thinking that attorneys are always watching.

    2.)Patient has RLQ pain and tenderness caused by an ectopic gestation caused by a companion’s fertilization–not her husband. She begs surgeon to keep the chart innocent and pure and private and everything is taken care of by describing her problem as appendicitis, even though it was an incidental appendectomy that was performed, along side of the la di da da- ectomy. No lies. “A section of the fallopian tube was excised owing to a mild peritoneal fibrinous inflammation.”

    3.) Patient has a fever of unknown origin and alternating synovial pain and inflammation in her shoulders and elbows. Patient’s doc says in chart that
    diagnosis is uncertain and lists a long differential, but doesn’t include Meditaranean fever (which is what she had). Chart finds way to patient’s attorney friend.

    It’s easy to keep going with more examples. It’s just another policy error given to us by lay folks that will have to be corrected after a few years trial.

  51. While a good idea in principle, for this to work I think there has to be a distinction between information that SHOULD be shared and information that SHOULD NOT be shared.

    If you want to improve on this, you are going to need two classes of note: shared patient notes and physician case notes that remain privileged.

    Adding the burden of self-editing for potential patient sensitivities, caregiver conflicts, malpractice liability, second guessing by outside physicians (this will be a new one) on top of the new administrative challenges they’ve just been handed is … naive, is the polite word for it.

    I think you’ll see a chilling effect