Patients want to see the notes their doctors write about them: the power of transparency in health care

Transparency in health care can bring greater empowerment and enable more rational decision making for health consumers. Physicians acknowledge this: “We believe that increasing transparency in the health care system can be beneficial to both patients and physicians,” said J. Fred Raslton, Jr., MD, FACP, president of the American College of Physicians.

There’s an indication that patients will embrace transparency in the form of accessing their physicians’ notes about them, based on the OpenNotes project research published in the Annals of Internal Medicine this week.

The objective of the study was to measure the impact on doctors and patients of extending patients access to view their doctors’ notes over a secure Internet portal. The trial was done at three medical centers: Beth Israel Deaconess Medical Center in Massachusetts, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Washington state. Some 13,564 patients and 105 primary care providers were involved in the study.

The finding that virtually all patients involved wanted to continue to have access to doctor’s notes is significant. However, even more powerful is that 62% of patients would like to be able to add comments to doctors’ notes, which one-third of doctors said would also be useful. One in 3 patients believe they should be entitled to “approve” the notes’ content; few physicians thought so.

A majority of patients agreed that OpenNotes could have many benefits for them, including taking better care of self, understanding health conditions, remembering care plans better, preparing for visits more effectively, feeling more in control of their care, and taking medications better. Fewer than one-half of physicians agreed that these potential benefits would accrue to patients.

Nonetheless, most physicians agreed that nothing was difficult about the OpenNotes program and they experienced no changes in their practice (such as workflow interruptions and productivity loss).

Health Populi’s Hot Points:   “We suspect that fear or uncertainty of what is in the doctor’s ‘black box’ may engender far more anxiety than what is actually written, and patients who are especially likely to react negatively to notes may self-select not to read them.”

For those patients who want to health-engage, the OpenNotes project gives credence to the fact that patients can handle the truth. (Cut here to Jack Nicholson and Tom Cruise in A Few Good Men). Beyond “reading” notes is the transformation that can happen within a patient on the journey toward empowerment: the researchers point to a quote from a patient focus group: “Having it written down, it’s almost like there’s another person telling you to take your meds.”

Thus begins the virtuous cycle of communication in the healthcare transparency ecosystem. Transparency brings enlightenment and empowerment in health care.


About Jane Sarasohn-Kahn

Jane Sarasohn-Kahn is a health economist, advisor and trend-weaver to organizations at the intersection of health, technology and people. Jane founded THINK-Health after spending a decade as a health care consultant in firms in the U.S. and Europe. Jane’s clients are all stakeholders in health, including technology, bio/life sciences, providers, plans, financial services, consumer products, public sector and not-for-profit organizations. Jane founded the Health Populi blog in 2007, covering health policy, technology, and consumers.

17 Responses to Patients want to see the notes their doctors write about them: the power of transparency in health care

  1. Fannie Brown October 3, 2012 at 2:34 pm #

    Given greater transparency in access to physician notes, does there exist the likelihood that physicians could unconsciously “self edit” knowing that the information can be accessed by a patient? I periodically ask for a copy of my medical record from each physician I see for a prolonged period of time even when I’m charged so I can get a complete picture beyond the hurried office visit. Physicians don’t always share everthing with you. Just recently I asked my PCP about one element in my blood work results that indicated a high “score” and she simply said, “it’s not important”. I was taken aback and am now considering switching to someone more thoughtful of a patient’s request for explanation.

  2. bruce kerr October 3, 2012 at 7:23 pm #

    .. It is a patient right. I always question and look at what is being written when i wanted to
    I have even read over a doctors shoulder when he use an emr. I also would ask where in if i donte chart does it justify what you said when i don’t see it or understand.

  3. Peter Mahaffey October 3, 2012 at 11:38 pm #

    I note that the featured proponent of making sure that patients see their notes, Dr Raslton, says that this “CAN” be beneficial, not IS beneficial. There’s no proven evidence at all that the practice IS helpful. As a plastic surgeon, I for example want to be free to tell a family physician that parents who bring their small child insisting upon that his/her ears are pinned back when the child isn’t in the slightest bothered are excessively pushy and likely to damage the child. If thats my honest opinion then why shouldn’t i be able to express it in the notes without fear that I have to modify my opinion to suit political correctness or lawyers. Ultimately, this stifling of freely expressed opinion will do more harm to patients than good because the line of communication between physicians will be damaged. And if patients dont like the physician who speaks his mind then they can go find another one. Its a free country. But dont try to enmesh us in sanitised correspondence or notes.

  4. Patrick Sweet, MD October 4, 2012 at 4:43 am #

    I agree with Dr. Mahaffey. I would contend also that patients do not always know what medical jargon means and this effort would only add work to the already overburdened physicians in having to offer frequent explanations or responses to comments when they may not even be pertinent. I like the way the VA handles this — up front explanation the patients do not have a right to access their medical records.

  5. sandy halliburton October 4, 2012 at 8:25 pm #

    i would like to be able to read all my mds’ notes…..but as a medical professional, at least i would understand them! i still remember being reported to my supervisor by a patient’s relative who heard me tell another rn that the pt. was SOB. she thought i had called him a son of a bitch!

  6. Theresa Calluori October 5, 2012 at 1:30 am #

    My doctor told me I was perfectly healthy. I am the poster child of all the correct numbers for whatever they assign numbers to. I was denied medical insurance because some one who sits at a desk at an insurance company read a meaningless note and decided I have a heart condition. I do not have a heart condition nor did I ever have a heart condition and now no one will insure me based on a lie. Even though the doctor appealled they still refuse me. I am infuriated!

  7. BJ Lawson RN (ret) October 5, 2012 at 11:50 am #

    I don’t understand why people think this so-called transparency of their medical records is something new. I have known since the early ’70’s that “your” medical records are just that-yours. All that has ever been required to obtain a complete copy of your medical records from any doctor or hospital is to sign a “release of information” form available at the site of care. The info it asks for from you is mainly for clerical purposes-dates requested (ex. Jan 1- Dec 31 2011), how much info you want (just Dr notes or lab & x-ray also), & reason (so they know if it was for ‘personal records’ or if it was copied to send to another Dr for a consult, etc). They can charge you a fee to cover cost of paper & manpower if the file is very large, although most won’t. This is why you should sign a release at the first of the year, covering that year, then as you leave after each appointment you can just remind them to send you a copy of that days notes. They don’t charge to mail you a page or two.
    If you have an issue with what you read in your records you can bring the copy with you to your next appointment to discuss it.
    I do agree that without a basic understanding of medical terminology, it won’t tell you alot-but websites like Medscape can give you many definitions. Asking the Dr or his nurse will tell you more though; thus why I recommend taking a copy to the next appt to get clarification. (& you can write notes on your copy to take back home.)
    Unfortunately, Dr Sweet (above) is misinformed about VA medical records. These can also be obtained-you just have to go to the Medical Records dept. to fill out the forms to obtain them, but they are slow due to the volume of requests. I know, I have 2 boxes of my husband’s VA records in the closet, as well as my own.
    The only thing new about being able to obtain your own medical records is the process of doing it online, which I am not comfortable with, simply because of the number of hackers out there.

  8. Gabriel October 6, 2012 at 12:07 am #

    Transparency is great… When we’re dealing with informed, open minded and good willed people. Unfortunately, that is not always the case. If you look hard enough, you will find glitches in every medical record… Does that mean that patients are being ill treated? Medical records help doctors and other health professionals keep track of their work, they do not represent the work itself. In fact, where I work, the greater the work load, the thinner the records… Are patients being mistreated?

  9. Caroline UGAVA October 6, 2012 at 7:36 am #

    Transparency between patient, family and medical pacticcitioners is the modern appproach that any practitioner should be promoting. In Papua New Guinea where there is no social suppot system…tansparency will transform families to providing lasting care and support to their loved-ones who are undergoing long and chronic illinesses. This wil also avoid the ever challenging medical and nursing care that is provided by the practicitioners in PNG.

  10. Caroline UGAVA October 6, 2012 at 7:41 am #

    I support and promote trransparency

  11. Monica Smith October 6, 2012 at 3:26 pm #

    I suspect that once the dust settles on early adoption trial-and-error, that consumers (and providers) will eventually and more fully embrace the accessible electronic health record (aehr). Keep in mind that the health care encounter, and documentation of same, encompasses the three main dimensions of biological, psychological, and social aspects (i.e. the BioPsychoSocial Model of healthcare). Therefore, I also would predict the following: that medical physicians will increasingly take responsibility (and accountability) for only the “biological” component of the health record; while the responsibility/accountability for the “psycho-social” components of the health record will increasingly be pushed onto nurses or other medical support staff. Not that there is an absolute right-or-wrong way to go about this, in the emerging new models of “team-based” care, for after all, much depends on the context of the specific encounter, in determining what is the best or most optimal approach for a given situation. But, all things considered, I suspect that over time we will see medical physicians focus more strictly on the biologic aspects of their care, and back away from the accountability/responsibility for psycho-social aspects that increasingly will be assumed by others who may be better at doing it anyway. :)

  12. Transparent Pricing July 19, 2013 at 7:51 pm #

    Transparency is key to our industry’s future. I think its hard to argue against that. The professionals are on-board, the patients are in need, and the technology is now there. Yes! What more could we all ask for.

  13. Deborah March 7, 2015 at 2:32 am #

    I took an alcohol assessment and want to see their results. They will not show them to me. Isn’t that against the privacy act? I ask, “Well, what do you have to hide from me?” The courts had me do this and the worse thing is that I have a year sober now with a good track record of sobriety and now I have to do an “Intensive Out-Treatment Program”? It’s a waste of taxpayer’s money, my time and gas money for me to have to go through it when I’m not having an issue with sobriety at all. What do you people think?


  1. Great post on patient access to doc notes! | Healthcare Information Technology and the Public - October 3, 2012

    […] read the article here! 33.673285 -95.516829 Share for your health!:FacebookEmailLinkedInTwitterRedditDiggStumbleUponPinterestLike this:LikeBe the first to like this. This entry was posted in Thought provokers…. and tagged doctor notes, Patient access by Tisha Clinkenbeard. Bookmark the permalink. […]

  2. 3 in 5 physicians would quite today if they could | Health Populi - October 5, 2012

    […] engagement and participatory health in 2012. The positive results found earlier this week in the OpenNotes project (covered in Health Populi here) illustrates an emerging era of patient-doctor teamwork. This convergence is good news as the U.S. […]

  3. Understanding the patient journey | Health Populi - August 25, 2014

    […] and providers. The relationship between patient and doctor still holds trust. Growing acceptance of Open Notes and other transparency projects that focus on shared decision making between people and their […]

  4. Crossing the digital health chasm between consumers and providers – talking with Eric Topol | Health Populi - September 26, 2014

    […] this context, we discussed the Open Notes project sponsored by the Robert Wood Johnson Foundation, which found that once physicians opened their […]

Leave a Reply