OpenNotes

Posted on Jan 10, 2012 in Patient Care | 3 comments

OpenNotes: A New Prescription for Communicating With Your Patients

According to early data from the OpenNotes project, patients are overwhelmingly interested in exploring the notes their primary care doctors write about them after an office visit. However, the doctors worry about the impact of such transparency on their patients and on their own workflow.

Access to a patient’s medical record has changed drastically since an early 1996 television episode of Seinfeld, when Jerry’s friend Elaine was severely admonished by her physician for sneaking a peek at her medical record. Unfortunately, “peeking” was her only choice, as patient access to information in the medical record was not guaranteed by law until October 1996 with the advent of HIPAA regulations.[1]

Elaine was not alone, apparently. According to preliminary data recently published in the Annals of Internal Medicine,[2] at least 90% of patients surveyed want online access to any notes their primary care provider (PCP) has recorded about them. However, their providers are not quite so enthusiastic.

While some hospital systems currently provide the results of laboratory tests and procedures online, most do not typically provide patient access to the notes themselves. With the passage of HIPAA regulations in late 1996, patients can request this information from their healthcare providers for a fee ranging from $.50 to $1 per page; in addition to the cost, clinicians have up to two months to process the request.[1] However, with the advent of electronic medical records, the process of sharing medical records with patients is relatively inexpensive and far more convenient.

The Annals article describes survey responses to a questionnaire administered prior to the implementation of a program called OpenNotes.[2] OpenNotes is a year-long trial designed to better ascertain the benefits and problems that might arise when patients have access to the notes from their clinical encounters. During the first 12 months of the trial, patients were invited to read the notes their PCPs wrote following their office visits, e-mail correspondence, and phone calls. They were able to view these notes in their medical records via the secure websites where they viewed other portions of their medical records. In addition, when patients made a follow-up appointment, they received an additional e-mail encouraging them to review the physician’s note from the last visit. The ultimate goal of the OpenNotes project was to determine whether patients and their PCPs will want to continue after the study period ended in June 2011.

OpenNotes went live in June 2010 at three diverse practice settings in Boston, Philadelphia, and Seattle, with 250 PCPs and more than 90,000 patients initially eligible to participate. Prior to the official start of the project, all eligible participants were asked to complete a questionnaire that focused on the benefits, risks, and expectations of sharing notes with patients; patients were also asked about issues related to privacy, sharing notes with others, and the effect on their PCPs’ work life. Respondents then had the option whether to participate or not in the actual OpenNotes trial itself.

Among the 270 eligible PCPs, 173 completed the survey and 114 subsequently volunteered to take part in the OpenNotes trial. Among the 114 PCPs who decided to participate, 69% to 81% felt that open note visits were a good idea, compared with only 16% to 33% of those who decided not to participate. Among those who declined to participate in the trial, 80% thought revealing their notes to patients would cost them more time in having to answer patients’ questions, and the majority also expressed some discomfort in writing candid notes regarding mental health and substance abuse. Compared with nonparticipating PCPs, those who went on to participate in OpenNotes were far more likely to believe that patient care and patient satisfaction would improve when patients could access their notes.

Among the almost 90,000 eligible patient participants, 42% completed surveys. More than 90% of them embraced the idea of having access to their medical notes believing it would put them more in control of their health. At least half of them said they thought they would be more diligent about taking their medication and 22% said they planned to share the notes with others, including other healthcare providers. Contrary to what the researchers had expected, patient interest in the project spanned all ages, education levels, race, and self-reported health status.

Pros and Cons

Advocates of open-access medical records say they are not only a patient’s right but will help boost the quality of care as well. According to the co-authors of an editorial accompanying the study, “Electronic health records should be used to engage patients, their caregivers, and others in the health care delivery system. Expanding who uses the records and how they use them promises to facilitate communication, decrease redundant testing, and enhance our care delivery in ways we have yet to imagine.”[3]

The OpenNotes research team has been diligent about managing PCP perceptions of the project. In the year before the implementation of the OpenNotes survey, the researchers engaged in discussions about the project with eligible PCPs. In these preliminary discussions, doctors cited concerns about inappropriate reactions to what patients read.[4] They feared that some patients might become “cardiac cripples” after reading descriptions of inconsequential arrhythmias or that others might be insulted or offended by an observation about mental illness or excessive alcohol use. Without a clinical context, speculations about the possibility of cancer might trigger panic and fear. Others expressed dissatisfaction with their writing or keyboarding skills, and felt that their notes would appear unprofessional.

Many PCPs, however, could see clinical benefit and work efficiencies in making their notes available to patients. Many speculated that their notes would provide a review of the visit and help them to answer questions the patient may have forgotten to ask. Others believed that in the privacy of their own homes, patients would be better able to digest the recommendations made and engage in more active self-care. And for patients with chronic illness, some believed that sharing open notes among family members and caregivers would involve them more actively in the patient’s care.

What’s Next?

Since OpenNotes has gone live, the research team has tracked its consequences on doctor-patient relationships, physician time, and patients’ adherence to medications and medical plans. According to senior author Dr. Tom Delbanco, all of the doctors who chose to participate in OpenNotes for the 12-month trial have opted to continue using it. In an interview following publication of the results, Delbanco agreed that while some patients could become upset by what they read, others will benefit from access to their providers’ notes. “Think about it like a new medicine. We think it’s going to be good for the vast number of people and it’s going to hurt a few people. We also have to learn how and when to use it and so do patients.”[5]

Jill Shuman, MS, ELS
Published January 10, 2012

References

1. Office for Civil Rights, HHS. Standards for privacy of individually identifiable health information. Final rule. Fed Regist. 2002;67(157):53181-53273.
2. Walker J, Leveille SG, Ngo L, et al. Inviting patients to read their doctors’ notes: patients and doctors look ahead: patient and physician surveys. Ann Int Med. 2011;155(12):811-819.
3. Feeley TW, Shine KI. Access to the medical record for patients and involved providers: transparency through electronic tools. Ann Int Med. 2011;155(12):853-854.
4. Delbanco T, Walker J, Darer JD, et al. Open notes: doctors and patients signing on. Ann Int Med. 2010;153(2):121-125.
5. Swan N. Weighing new prescription for doctor/patient communication. New England Post Website. http://www.newenglandpost.com/2011/12/20/opennotes/. Published December 20, 2011. Accessed January 1, 2012.