Personal health records for clinicians

Working with patients online: tips for the real world

This is a lecture by Dr Mohammad Al-Ubaydli from Patients Know Best presented at the 2020health conference at the Royal Society of Medicine. You can read the transcript and download the presentation.

Common questions and short answers

• Should clinicians write differently if patients can read the notes? No, you should always assume that patient can read the notes and you should write them to provide complete information for other clinicians. Read more...
• Are there legal implications to online access? No, the same laws apply as those for paper access. Read more...
• Does record access create more work for clinicians? No, it reduces work. Read more...
• Should some patients be excluded from accessing their records? No, and that includes psychiatric patients.Read more...
• Who owns a patient’s data? The patient does. Read more...

It is important to give your patients a copy of their records

There are many good reasons to give your patients a copy of their records.

First, when patients understand their illness they are more likely to follow your instructions (see Systematic review of randomised trials of interventions to assist patients to follow prescriptions for medications). Patients do not get to understand because they rarely get enough time with their doctors and because there is so much information to get through. But in the comfort of their own homes, with a copy of their records and access to the Internet patients and their relatives get the time to build their understanding.

Second, your patients will be more satisfied and more likely to stay with you with that understanding (see The communication of information from physician to patient: a method for increasing patient retention and satisfaction).

Third, giving patients access to the records relieves the burden on you to know everything. For example, one study found that a full-time primary care physician on average reviews 930 pieces of chemistry/hematology data and 60 pathology or radiology reports in a typical week (see Design and implementation of a comprehensive outpatient Results Manager). You have so much data coming your way so you cannot possibly remember all the details. Instead you and your staff try to file the data for the patient's visit.

But another study found that at the time of clinical encounter, 81 percent of cases are missing pertinent patient data (see Traditional medical records as a source of clinical data in the outpatient setting). Sometimes this is because the data never arrived, other times because it was misfiled, others times still it takes too long to get the data from the files. For all these reasons, you end up having to ask you patient. If they do not know, you do not know.

Finally, medicine is a fascinating subject and you should share the magic with your patients. Just as you went to medical school to learn many members of the general public would also like to learn. Having access to the medical records is an important window into your world.

PHRs are ideal for patients with chronic diseases

In an acute-care hospital, a more paternalistic relationship construct is often necessary because of medical situations are urgent, and patients less able or interested in participation in decision making. (See Emanuel EJ, Emanuel LL. Four models of the physician–patient relationship. JAMA. 1992;267:2221–6..)

But In the community, patients tend to be less acutely ill even if they are afflicted with a disease that may be chronic and severe. Therefore, the type of relationship that develops between themselves and their physicians may be more conducive to greater patient autonomy and participation. (See Arora NK, McHorney CA. Patient preferences for medical decision making—who really wants to participate? Med Care. 2000;38:335–41.)

This is why PHRs are ideal for patients with chronic diseases.