Patients Know Best: A Personal Health Record

Submitted by Aspergillus Administrator on 14 March 2014

Mohammad Al-Ubaydli, founder and chief executive, Patients Know Best, recently had an article published in the British Medical Journal entitled ‘Patients must have control of their medical records’. He writes the following:

Imagine an elderly patient with heart disease, arthritis, and a history of depression who needs social care at home. These are the patients who generate most of the work and cost in today’s developed world health systems, and usually their care is fragmented.

Our hypothetical patient sees two specialist nurses as well as different general practitioners at her local practice. She sees three sets of specialists, two of them at different hospitals, and she is to have a cataract removed at a third hospital. A carer comes every day, and she depends heavily on her three sons who share her care and live in different parts of the country.

Everybody accepts that this patient will have better care, and that costs to the health system will be lower, if her care can be integrated. But how can that be done? Well, one way—and perhaps the only way—is through the patient having electronic records that she controls herself: a personal health record.

This sounds like it has clear advantages to all concerned, not least the patients as they gain some control and some insight into what information every medical professional who attends them has access to – at the very least something that will reduce anxiety and confusion.
For example I was recently talking to a relative who had spent some time in hospital who on admission had to spend some time on pain relief and ‘nil by mouth’ in case of a possible urgent need for surgery. She noticed that several nurses and auxiliaries were not aware of whether or not she could be fed or given a drink and each had to go and find a particular nurse to find out – a waste of time and effort and vulnerable to error. If my relative had been able to write into a personal bedside record available to all it would have been far more efficient – the medical staff put up a notice but many missed it.

If you read the comments made about the article Doctors you will find that several doctors are concerned that they need a ‘private’ area to leave notes or access older notes written before the electronic era but I don’t think it is being suggested that clinical notes will be replaced by a personal health record. Where the two systems cross over and what each has access to is an area for debate, as perhaps is the need for an expensive electronic personal record when a simple notebook and pen might suffice? Scratch that last comment – the book would probably go missing inside a few hours!