A Journal of the American Medical Association (JAMA) reported last month the result of a survey of patients and carers from academic centres in the US. Participants of the survey were asked about the access to content and test results. 95% of patients stated that they would like to have instant access to results from tests as soon as they become available. Even if the tests are abnormal.
Tests that patients receive include blood tests, X-rays and tests from tissue samples. These tests could have been done for a number of reasons: routine monitoring of high blood pressure or diabetes, suspicion about an infection or concern that a cancer is causing new symptoms.
Historically there have been concerns from clinicians that patients are viewing results that they might not understand, mis-interpret or are worried about. If a tests from a tissue sample shows that someone is suffering from a possibly incurable cancer, this is probably better read with a friendly face insight? And a specialist at hand to answer any questions?
Patients seem to be happy to have a look without these conditions. This might mean one of several things:
- It is so important to them that it overrules any other concerns.
- Or that they trust their clinicians to prepare them for possible results from a test.
- Or that clinicians will be hand if they have questions after reading the results.
- Or they just can't imagine how horrible the experience might be.
The British Medical Journal contrasts the US experience with experience in the United Kingdom - where open access to records is still not available to many patients. Concerns about comms has been a major stumbling block. This might not be logical: clinicians have always been taking tests. Would this be a normal workflow?
1. Explain the reasons for the test and possible outcomes with the patient.
2. Do the test.
3. Test the patient about result.
4. Explain the meaning of the result to the patient.
If patients have direct access to results point 1 and point 2 don't change. And point 3 might get easier: if the test is normal - then point 3 is not needed and point 4 is only needed if the test is abnormal beyond what was expected. So for most intents and purposes more work only happens if the previous work flow has been highly deficient and results have not been explained to patients.
The second argument again the 'patients might be worried' argument is even simpler. Tell me about your bank account? Seeing results on there can be scary. Really scary. And in fact so scary that some people don't look at it or don't look very often. But few people would claim that access to your balance should be restricted to moments when you are sitting down with your friendly and supportive bank manager with a box of tissues to hand?
The senior author of the JAMA report, Catherine DesRoches, presented a passionate and informative pleas for open patient records at 'Patient Powered Safety' in 2021. At this years 'Patient Powered Safety 2023' we will hear from initiatives that take the involvement of patients beyond the 'read-only' access of their records. We will hear from patients and researchers from around the globe how patients are using digital and other systems to contribute to safer care. Contributors will come from around the globe: Australia (morning session!), Norway, US, Switzerland, Canada and the UK.
Are you interested in joining us online on the 19th of May?