* With each Individual; Social Demographic And Medical patent-held and patient-owned unified health and social care record.
The retired gynaecologist Rupert Fawdry has had a lifetime interest in medical computing. He recently published a paper in the BMJ, which made an argument that is out of sync with prevailing beliefs and attitudes. He pointed out that the idea of an integrated paperless record for patients with complicated needs is quixotic at the current time. His insight is that elderly people, such as his centenarian mother, have so many care providers (social services, primary care, ambulance service, charities, district nurses, hospital departments and more) that an integrated record is a near impossible achievement. The nub of the problem lies in synthesising a consolidated record from an eclectic group of component records designed with no unifying framework. The problem is not that computers cannot be connected to each other electronically. This is easily achieved and in this way they can share data as a kind of electronic mail. However, that is a far cry from the logical problem of bringing all these disparate sources of information together into a single integrated record. Maybe this will happen one day, but in the meantime Fawdry has an important practical suggestion, which is as unglamorous as it is useful – he suggests a handheld paper record. Of course there are many examples where this has worked extremely well, not least the handheld maternity record. Fawdry says the multi-sector handheld record should become the norm for people with multiple diseases and complicated needs. Iain Chalmers, founding editor of the James Lind Library, points out that such a record could ensure that a person’s wishes for resuscitation and organ donation would be readily available.
Some people may think that Fawdry is a Luddite, but failure to actually achieve an integrated record, despite decades of trying, now convinces many that “heaven must wait” and we need to get ahead with developing, alpha testing and piloting a paper-based shared record for people with multiple conditions. There is, of course, no reason why the paper record should not include computer print-outs. As the years go by an increasing proportion of the record will be computer-generated – at some point most output may be computer-provided. At that point we will be moving towards an integrated care record, but we still won’t be there.
Many I.T. experts understand the theory of integrating disparate information, and wax eloquent about ontologies and so on, but don’t seem to be able to achieve an integrated record in practice. Most people are just ignoramuses who don’t understand the difficulties of logical integration of disparate information sources, where the meaning of a term is not just determined by its definition, but where it sits temporally in relation to other terms. Fawdry is a lover of computers and can bore for Africa on the topic, but he is a realist. For people like his mother there is no time to wait for an all-singing, all-dancing, universally applicable, inter-operative, electronic health and social care record.
— Richard Lilford, CLAHRC WM Director
- Fawdry R. Paperless records are not in the best interest of every patient. BMJ. 2013; 346: f2064.