At the end of last week, the UK government completed its consultation on patient access to their medical records. The British Medical Association submitted its feedback, which is extracted on the BMJ web site, with the headline “BMA warns against letting patients have access to their electronic records”.
Below is the reply we submitted to the article.
The BMA has adopted an old fashioned, paternalistic, and misguided policy by warning against patients having access to their electronic records.
We disagree with the BMA on a principle: data about the patient belongs to the patient. The clinicians who enter data did so as part of the care they are paid to provide for patients. Giving patients access and control over their records is fundamental to a health service that is truly patient centred.
The BMA has based its report on prejudice rather than evidence. Early trials are clear that patients, including patients with mental health problems, accessing their records have more benefits than harms (1-3). Furthermore, the traditional fear that patients would overwhelm doctors with emails have been proved wrong repeatedly. In the most consumerist health care market in the world, the US, patients respect their doctors’ time. Large studies by Kaiser Permanente have shown that doctors save time by working online (4).
Many patients have multiple records in different institutions, and it’s a bureaucratically and legally complex process for those institutions to share records. But if patients control the records then they can easily make them available to anybody they want, including close relatives who may be their carers. Such sharing underpins continuity of care.
The BMA, is however, right that there is a problem giving patients access to notes that were written by doctors who thought that they would be read only by other professionals. The notes are full of statements that doctors do not feel comfortable with patients seeing. So we recommend that all notes written on or after 2012 should automatically be made available to patients, under the control of each patient, by law. Before then, written records should be excluded, unless the patient makes a formal request using existing channels. Test results, prescriptions and procedure records should be made available.
Medical notes are more than objective data. They allow valuable hypothesis generation and testing as each patient’s differential diagnosis evolves. Doctors are rightly anxious that they don’t know how to do this in a way that is comfortable for patients. Medical schools have failed to teach how to write down such hypotheses in a way that is clinically useful but not anxiety-inducing. This is why we are working with UCL medical school and Great Ormond Street Hospital to create a course for junior doctors that teaches them how to write in the notes on the assumption that patients will have instant and complete access to the writing. Whatever the BMA may think, this is the future.
We will provide the course to others around the world and hope that the BMA embraces education of clinicians rather than shutting out patients from their own records..
Mohammad Al-Ubaydli, founder and chief executive, Patients Know Best
Richard Smith, chair, Patients Know Best
Competing interest: Patients Know Best is a company that uses information technology to enhance patient clinician partnership.
- Ross SE, Lin C-T. The effects of promoting patient access to medical records: a review. J Am Med Inform Assoc. 2003;10:129-38.
- Cimino JJ, Li J, Mendonca EA, Sengupta S, Patel VL, Kushniruk AW. An evaluation of patient access to their electronic medical records via the World Wide Web. Proc J Am Med Inform Assoc. 2000:151-5.
- Stein EJ, Furedy RL, Simonton MJ, Neuffer CH. Patient access to medical records on a psychiatric inpatient unit. Am J Psychiatry. 1979;136:327-9.
- Chen C, Garrido T, Chock D, Okawa G, Liang L. The Kaiser Permanente Electronic Health Record: transforming and streamlining modalities of care. Health Aff. 2009;28(2):323-3.