As an Obstetrician (alright, ex-Obstetrician), the CLAHRC WM Director is familiar with the patient acting as custodian of her medical notes. Maternity care has used a patient-based paper note system for four decades. Now Rupert Fawdry has suggested a patient-based booklet, WISDAM, for all health care needs (as mentioned in a previous blog). But Mandl and Kohane think we can move to a patient-controlled electronic record, which various health care providers would top up as necessary from their electronic systems, using information formats compliant with inter-operability standards. The record would also be topped up with the patient’s data from any study in which they have participated. Patients would record their own thoughts. Data from all sorts of physiological recording devices would be streamed into the electronic record. The electronic note would accumulate data anamnestically over a life-time and, of course, it would include the owner’s full gene sequence. Presumably dental records, social work reports, community nurse reports, etc. would all go into the cloud-based archive. Some record this! How quickly we can move to such a record, whether we should use a paper-based patient-held booklet in the meantime, and how to stop the whole thing becoming an impersonal monster that will drive everyone mad – these are big problems to solve.
— Richard Lilford, CLAHRC WM Director
- Mandl KD & Kohane IS. Time for a Patient-Driven Health Information Economy? New Engl J Med. 2016; 374: 205-8.