The WISDAM* of Rupert Fawdry

* 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,[1] 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

Reference:

  1. Fawdry R. Paperless records are not in the best interest of every patient. BMJ. 2013; 346: f2064.
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5 thoughts on “The WISDAM* of Rupert Fawdry”

  1. Thanks for bringing this article to my attention and from my years as a GP trying to coordinating care of elderly patients I would agree with the idea of hand-held records. The problem is getting people to fill them in and getting patients, those who are not house-bound, to bring them with them to appointments. I agree the maternity record is a shinning success but years of trying to have handheld diabetes records only resulted in partial success. As the article alludes to I think the trick is to get people to want and value a genuinely shared record, easier said than done. One barrier I came across was staff having to make duplicate records, for example district nurses recording in a written care record at home (as the author of the article advocates), one for their community trust and one in the GP practice – all very time consuming and not a good use of time.

    It would be good to hear about examples where care teams have got together to make this happen in the West Midlands and see if can can learn from success on how to make this work. My gut feeling is that, as in many situations, “less is more” and the simpler we keep these records the better. I also have a feeling that the best person to make it happen is the person whose record it is – prompting people to use it and making sure people read what others have written.

  2. Thank you. After 35 years of my obsession with the need for both electronic records AND for individually-held paper records, seems to be more relevant than ever. Jumbo jets still have a place where everyone dream of travelling by Concorde. The W.I.S.D.A.M. (With Individuals: Social. Demographic And Medical) record is not a substitute for an electronic record, but is both complementary to, and also a pathway towards better electronic records if only because the “granulated” approach seems likely to be a viable path towards the standardisation of simple things.

    Databases cannot “talk” to each other unless they use exactly the same options, yet virtually every database asks for a ‘Title / Pre-fix / Salutation’ but does not allow a free text option. But no computer coding can tell a computer how to cope with one database which allows only “Mr / Mrs / Miss / Ms / Mx / Rev / Doc” with another which only allows “Mr / Mrs / Miss” Try the RSM for one of the most baffling list of options!

    The wisdam initiative provides an opportunity to encourage all database writers to use the options as “Mr / Mrs / Miss / Ms / Mx / Other (free text)” This, if universally adopted, would allow the correct information to be used ‘inter-operatively’ throughout Britain (Even allowing Quakers to refuse any ‘title’)

    or “How many spaces are needed to accommodate 99% of ‘Full Names’?”

    Many major databases e.g. for visitors to Canada, in one breath ask me to enter my full name and then does not give me sufficient space. The wisdam dataset suggests that I document both my true ‘full name’ but also a standardised ’30 spaces’ shortened version” e.g. “Rupert Davis S Fawdry”

    The proposed Wisdam ‘granulated’ dataset can, under licence, be down-loaded from the http://www.wisdam.info by anyone worldwide and used as an international standard anywhere without asking my permission. In time each part will be made also be made available as a QR code (readable by any computer system) as well as being in plain patient-readable English

    In this context the book entitled “Interop: the promise and perils of highly interconnected (IT) systems by Palfrey J and Gasser U. New York: Basic Books, 2012, with it’s comment “We have explored dozens of complex (IT inter-operative) systems , . , but none more complex than the (those used in) . . . health care information . . “

    They conclude their chapter on health IT with an over-optimistic dream that somehow governments and industry will be able co-operative sufficiently to find a way out of the current chaos.

    The wisdam initiative, by genuinely starting with individual patients, regardless of their level of on-line electronic access, offers more potential for inter-linking the multitudes of independent health and social care records than anything else I have so far seen anywhere worldwide.

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