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  • Should patients have access to their consultation notes?

    The introduction of electronic patient records has accelerated the trend for transparency in healthcare. Secure Internet patient portals now offer patients access to medication lists, test results and other parts of their medical record. While allowing patient access to their medical information is widely accepted, few clinicians share their consultation notes proactively with their patients.

    Is there such a thing as ‘too much information’? It seems so, at least from the doctors’ and staffs’ perspective. The idea of offering consultation notes to patients has stirred concerns that patients may become confused or distressed and flood doctors with telephone calls and e-mails.  The general feeling is that it would place excessive demands on the already overloaded doctors and staff.

    For example, how would patients react to doctors’ notes regarding their mental health, efforts to control their weight or even the likelihood of developing malignancy?

    Furthermore, will making notes accessible to patients change the way in which doctors write them? Will it lead to less specific accounts in fear of worrying the patient? Or, will it result in more thorough, jargon free notes that seek to inform the patient?

    Studies that have surveyed patients and physicians have shed some light on this matter. In particular, a multi-centre study carried out in primary care practices in Massachusetts, Pennsylvania and Washington measured primary care practitioners’ (PCPs) and patients’ attitudes towards the potential benefits and risks of open consultation notes (1).  The study found that while there is some agreement between doctors and patients regarding the benefits of open notes -in general patients thought that open consultation notes were a good idea more often than PCPs.  In contrast, 50% of PCPs thought that the open notes would generate worry amongst patients but only 12% of the patients agreed with the PCPs about this.  Likewise, 50% of the PCPs anticipated an increase in patient questions between appointments but few PCPs anticipated an increased risk of law-suits. Interestingly, patient enthusiasm was uniform across age, education and health status and about 30% of the patients anticipated sharing their visit notes with others.

    Following the surveys, the consultation notes were made accessible to patients in an attempt to measure the impact of the intervention (2).  The uptake of the consultation notes was appreciable with 87% of patients opening at least one note.  After making use of the open notes the majority of patients reported that access to the notes helped them feel more in control of their care in addition to resulting in better medication adherence. Also, and in accordance with the pre-intervention survey, about 30% of the patients shared their notes with others. While there were some concerns regarding the fear of lack of privacy in about 30% of the patients, less than 10% reported feeling confused, worried or offended.

    From the doctors’ perspective, the post-intervention survey suggests that the open consultation notes did not have the impact that PCPs feared. In fact, the volume of messages PCPs received from patients didn’t change, less than 10% of doctors reported spending more time addressing patients’ questions and less than 5% reported longer visits.  However, 3% to 36% of doctors documented having to change the visit notes content and taking more time to write it.

    The overall results of these studies suggest that opening consultation notes may not be ‘not too much information’ for the patients.  Remarkably, more than half of the patients wanted their degree of involvement to increase –after their experience with open notes patients expressed interest in being able to add comments to the notes, and 1 in 3 patients thought they should be able to approve the contents of the notes. While doctors did not agree with granting patients permission to comment on or approve the notes, 99% of patients wanted to continue to open their consultation notes and no doctors declined to allow this.

    At How are you? we are driving the change towards patient-centred healthcare practices.  We’re doing so by keeping up to date with the primary literature and understanding it in order to enhance our patient portal accordingly. In particular, we’re placing a great deal of importance on perfecting our patient health record to allow doctors and patients to communicate in ways that have been shown effective. Now, more than ever, when the intricacies of healthcare are increasing and multiple practitioners are more and more involved in a patients’ care it is crucial that all records, including consultation notes, be available electronically in a timely and efficient fashion so that everyone is kept in the loop.  

     1. Walker J, Leveille S, Ngo L. Inviting patients to read their doctors’ notes: patients and doctors look ahead 2011 ; 

    2 .Delbanco T, Walker J, Bell SK, Darer JD, Elmore JG.  Inviting Patients to Read Their Doctors ’ Notes : A Quasi-experimental Study and a Look Ahead. 2012;

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    • October 23, 2012 (5:44 pm)
    • #long term conditions
    • #primary care
    • #secondary care
    • #care planning
    • #personal health record
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