OpenNotes: Drilling Down to Assure a Healthy Evolution

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.

Sexual/elder/child abuse…and the aging driver:

Addressing and recording these wrenching issues is also the subject of much debate that long antedated OpenNotes, and at least some states have legal requirements about notes related to abuse…and access to them. And there’s also the issue of abuse of public safety: Dr. Kernisan rightly reminds us how hard it is to address the right to drive with the aging individual whose car may be a second home. The dilemma has long been clear: How to address the balance between helping patients maintain autonomy and self-esteem…and our acting in the public good. From a broader perspective, how OpenNotes interfaces with such issues is intimately related to how society as a whole wants to address them, and indeed we hope this frank embrace of transparency provokes more open and active discussion in these arenas.

All 3 sites in our study have committed to expanding their use of OpenNotes well beyond the study’s primary care populations. They are grappling with Dr. Kernisan’s questions and others; these are all issues that health professionals will need to consider as OpenNotes is adopted (we hope) more broadly.  Here are other things we have been talking about, and we’d love to hear reactions and suggestions from The Health Care Blog readers:

– Should some notes be hidden from patients?  (In our study, physicians wanted this option, but then rarely used it.)
– Should clinicians have an explicit option to keep private notes not visible to patients, such as Dr Sabbatini’s “vest pocket” notes?
– Should all doctors offer OpenNotes? What about residents, fellows, or medical students? And other clinicians – nurses, physician assistants, physical therapists, clinical pharmacists, social workers, etc?
– Should some patients be excluded from access to notes?  Who decides? How should this work?

Our study indicates that many clinicians will change how they write about sensitive topics.  How might the note change? To what extent?

Given today’s focus on transparency and consumers’ enthusiastic response to the idea of shared visit notes, we believe OpenNotes will spread and become the standard of care.  We are committed to working with patients, clinicians, hospitals, payers, and researchers to refine the use of OpenNotes and examine the consequences.  We invite one and all to send us stories, ideas, cautions, and suggestions. It’s not easy to have patients and clinicians join on the same page. We need all the help…and partners…we can get!

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

Tom Delbanco, MD, MACP, is the Koplow-Tullis Professor of Medicine at Harvard Medical School and founder of the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center. His research has focused on transparency, medical error, and improving the quality of care by drawing on the patient and family perspective. He is co-principal investigator of the OpenNotes initiative funded in large part by the Robert Wood Johnson Foundation.

Jan Walker, RN, MBA, is a health services researcher at Harvard Medical School and Beth Israel Deaconess Medical Center. Since directing patient survey services for the Picker Institute in the 1990s, she has continued to work to understand and improve the patient experience with care, most recently as co-principal investigator of the OpenNotes initiative.

14 replies »

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  4. Great idea to have OPEN NOTES, and I am pleased to see that the initiators are encouraging users to provide feedback. Agree that it would be a substantial advance to have OPEN NOTES become the standard. Though I retired in 2005, we had long provided copies free of charge to patients who asked for them, and we routinely provided them to all referring physicians. Thanks, and keep up the good work.

  5. So happy to see that this initiative is finally being recognized.
    Health service researchers in the multi-specialty organization in Minneapolis where I work have been interested in this topic for a number of years, and have published the following two articles:
    Arch Intern Med. 2004 Apr 12;164(7):793-800.
    Patients’ interest in reading their medical record: relation with clinical and sociodemographic characteristics and patients’ approach to health care.
    Fowles JB, Kind AC, Craft C, Kind EA, Mandel JL, Adlis S.
    SourceHealth Research Center, Park Nicollet Institute, and Park Nicollet Health Services, Minneapolis, Minn, USA. fowlej@parknicollet.com

    No Change in Physician Dictation Patterns When Visit Notes Are Made Available Online for Patients
    Elizabeth A. Kind, Jinnet B. Fowles, Cheryl E. Craft, Allan C. Kind, Sara A. Richter
    Mayo Clin Proc. 2011 May; 86(5): 397–405. doi: 10.4065/mcp.2010.0785
    PMCID: PMC3084642

  6. Interesting idea. It’s great that there are initiatives like this to make health care more transparent for the patient. It will undoubtedly helps them see their diagnosis in “black and white.” I can’t help but wonder how this will impact policy like the ACA. As more and more of the country gets access to health care (…probably more than anyone thought before because of recent talks about immigration reform), is this really the time to ask our physicians to be more choosy with what they write?

  7. Terrific post!

    This is such a new process tool that I think we – patients, clinicians, caregivers, the whole enchilada – have to be willing to talk, as we are doing here, about the new processes and their effect on care.

    So many communication barriers have existed historically between a clinician’s desire to help and a patient’s desire to be helped: everything from ivory tower thinking to childish wishing-away to HIPAA. Now that a new era is dawning where patients and doctors can, and do, actively collaborate toward better health and outcomes, there wil inevitably be growing pains as we all figure out the best ways to use that participatory model.

    Patience, padewans. And that means all of us.

  8. I hope that to VA, Beth Israel Deaconess Medical Center or another location is evaluating some of the potential clinical effects. I’m especially interested in learning if medication adherence is improved as suggested by the qualitative survey of patients in the trial.

  9. If you would like to learn more about OpenNotes please visit the OpenNotes website: http://www.myopennotes.org The above link in the blog is broken. The site provides more information about study and advice, as John posted about, to help clinicians and patients share visit notes.

  10. Many thanks to Tom Delblanco and Jan Walker for taking the time to write this thoughtful response to my original blog post.

    Perhaps the MyOpenNotes.org site should post some of these questions that remain to be sorted out, and allow people to post responses anonymously, or at least without having their name publicly attached to their comment (this would allow providers to be more truthful about their anxieties).

    I also hope the VA, and others who implement OpenNotes, will have a robust process for allowing patients and clinicians to provide feedback, air concerns, and refine . It would especially nice to do this at the level of each department, since I imagine different departments will have different recurring concerns. For instance, in Geriatrics we might benefit from having a set of informational resources to direct patients to (re the evaluation of cognitive impairment, or counselors experienced in helping families through the concerns I mentioned). Whereas in orthopedics, perhaps they’d find they need informational resources that explain the procedures in question.

    In short, as OpenNotes is used at more and more health centers, I hope the implementation will be done in a Plan-Do-Study-Act way, so that patients and clinicians end up able to take full advantage of this much needed transparency. Both groups will need support to adapt to and then flourish in an era of OpenNotes.

  11. We are working on how to take the next steps in transparency and patient centered care here at Group Health. With over 70% of our patients already sharing the rest of their medical record online and messaging with their docs and clinical teams, it will be a robust test of the ideas that have been generated by the open notes effort.

  12. From the Open Notes site:

    Clinicians: Writing Notes

    Most doctors in the OpenNotes study found that they didn’t need to change dramatically how they write their notes. Patients are smart. If they read something they don’t understand, they often look it up, or ask about it. But, if you are a clinician who wants make your notes as effective as possible to read, try to:

    Avoid jargon and abbreviations
    Briefly define medical terms
    Spell out acronyms, especially ones that might easily be misread (i.e. “SOB,” shortness of breath)
    Before you sign your note, incorporate test results to give patients the full picture
    Encourage patients to ask questions about what they’ve read
    Include educational materials or links to content that can help patients learn more about their medical condition
    Talk about your notes. Investing a few minutes at an appointment can strengthen the connection between patients and providers. It can also encourage patients to reveal information they might otherwise be reluctant to bring forth, and allow providers to gauge the level of understanding or opportunities for education.

    Patients: Reading Notes

    By reading your doctor’s notes, you are taking an important step toward taking responsibility, whether you are healthy or dealing with illness. Think of these notes as a tool. Patients, providers and caregivers can all use the note as the basis for an agreed-upon care plan. To get the most out of your notes:

    Review them immediately after your appointment, while the conversation is still fresh in your mind. Talk to your doctor if you see anything that you feel is inaccurate.
    Use the notes to check that you are following your agreed upon treatment plan, whether there are any changes to your medications, and which follow up tests or appointments you need to schedule or attend.
    Share them with your family members, caregivers, or others involved in your care and discuss how you are going to work together to make any recommended treatment work.
    Re-read the notes before your next appointment to remind yourself of what you discussed with your health care provider at your last appointment. Think about any improvements you made since your last visit and any new problems you are experiencing since your last visit. You can also prepare a list of questions based on your note that you want to ask at your next visit.
    Look up health information on the U.S. Department of Health and Human Services Healthfinder website—a great resource for patients.

  13. Extremely interesting post. For background, would it be possible for someone to post the current OpenNotes guidelines? It would be helpful to understand what we’re working with here.

    My sense is that this needs to be refined a lot before this hits prime time.