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words of WISDAM from the Electronic Encyclopaedia of Personal Data (EEPD)

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It’s broke already and needs fixing

4 April, 2013 (13:26) | Data quality, Datasets, Government policy, National Programmes, secondary data | By: Helga Perry

Looking at the latest incarnation of the Maternity Dataset homepage  from the new Health & Social Care Information Centre that came into being this past April Fool’s Day, one might indeed be forgiven for thinking that the whole enterprise was some gigantic April Fool. So many broken links, so many inaccuracies. Not very good when you try to view the technical output specification and get  “Configuration error: The mime.csv file does not seem to contain details for this media’s extension [xlsm]. Please contact the system administrator.”  This is supposed to be the centre of Information excellence of health and social care in England, fergawdsakes.  Get your website together!

But at least they are making sure that everyone who visits the Maternity and Children’s Dataset  and bothers to read past the first sentence knows that what they are doing is “re-using clinical and operational data for purposes other than direct patient care “[our itallics] .  We doubt they would be so up-front about this if Rupert Fawdry hadn’t gone to Leeds in 2011 and made his points pretty forcibly.

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For every complex problem there’s always a simple answer….

2 April, 2013 (20:53) | Computers are Magic, Datasets, Logical Priority Standardised Q&A, Patient-Centered Care, perinatal data, primary data, secondary data | By: rupertfawdry

….which is always wrong!!

Karl Le Roux’s recent article reinforces what I have always said: that data collection must never be prioritised above improving individual patient care.

Clinical computer systems which put individual care first will always be complex, not just because different disciplines have different needs, but much more because branching questions are essential. As an example, an audit on the duration of the second stage of labour depends on many previous questions, most notably: “Was there a labour?”, “Time and Date of Start of established labour (Best estimate is quite adequate)? etc.

The choices at each fork in the flow of questions means that expert advisory committees, however erudite, cannot achieve the uniformity required since each will differ in its recommendations. None of the expert datasets so far has shown any evidence that the “experts” understand what computers can and cannot do. Every perinatal dataset still seems to assume that “Computers are Magic.”

It is more important than ever to carry out a detailed analysis of the ideal flow of questions and the precise wording, as created by clinicians, of every request for data and every allowable answer option.

Free text must be permitted wherever appropriate, especially under such headings as “Other” or “Unknown.”

Improving paper systems is cheap. Upgrading software is very expensive. For this reason we first need to facilitate high quality paperwork. We need greater access to best practice in paperwork, such as in the Standards for the design of hospital in-patient prescription charts (Academy of Medical Royal Colleges) and the Collected Examples section of our own EEPDwiki. Once we can get it right on paper, then we can  concrete our knowledge into digital formats.

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Masters not Servants

25 March, 2013 (16:47) | Patient-Centered Care, workload | By: Helga Perry

Interesting piece by Liz Charalambous in Nursing Times 22nd March. Commenting on the Francis Report, she reminds us that we need to master nursing paperwork, not be its slave. It’s all about recording the right things accurately and for the right purpose. Make sure that we are using it as a tool to enhance patient care, not as an end in itself.  As Liz says,

We need to master it, we need to take a universal approach and reduce the amount of it so that we can spend more time with patients.

Something very dear to our hearts here at EEPDtalk.

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The paperless office is about as likely as the paperless bathroom

22 March, 2013 (19:08) | Computers are Magic | By: Helga Perry

Someone in the United States Department of Defense once made the observation to a friend of mine that the paperless office is about as likely as the paperless bathroom. Here’s a French video that illustrates this point very nicely:

The Paperless Future

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How to avoid mistakes in surgery

21 March, 2013 (21:49) | Paper Records, patient safety, Patient-Centered Care | By: Helga Perry

I’m watching the 3rd programme in the BBC2 television series “How to avoid mistakes in surgery” – and they’re talking about the power of paper checklists in aviation. Paper still rules there. So in surgery there are the World Health Organization patient surgical safety checklists, introduced in 2008.  They are now used in many kinds of setting,  including the NHS,  Hurrah for paper!

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Paper fights back: over 50 neglected advantages of paper – BJHC

30 January, 2013 (18:13) | Casenotes, hand held records, Interoperability, IT fallacies, Paper Records | By: rupertfawdry

It may come as a surprise to learn that for over 20 years throughout Britain there has been only one whole group of people in receipt of healthcare that possesses a fully inter-operative and universally accessible record and with open access available to all those providing care: every expectant mother.

Mothers and children in many other countries, eg Zambia and Japan, have also had such hand-held records for even longer. The potential advantages of electronic records are:

  • more reliable collection, selection and distribution of data;
  • faster transmission of electronic version of traditional letters and reports;
  • potential for the reduction of medical errors through cross-checking, warnings and suggestions;
  • potential access anywhere, at any time, to individual patient data;
  • legible records;
  • better data-sharing with reduced duplication in the recording of data;
  • potentially electronically translatable into other languages;
  • better quality and quantity of collective data; and
  • potential for instant off-site backup.

In the light of this, in a world mesmerised by the undoubted advantages of electronic records, it is timely to review some of the values of traditional paper.

Many probable advantages have been identified. While some concern problems that may in time be overcome using digital technology, others seem so fundamental to the nature of electronic records that it is about time that each advantage of paper was more fully recognised and more openly discussed.

read the full article in British Journal of Healthcare Computing

via Paper fights back: over 50 neglected advantages of paper – BJHC.

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Well past the due date

24 January, 2013 (10:00) | Data management, Data quality, Interoperability, Maternents, maternity care, Midwifery, Nightmares!, Paper Records, Patient-Centered Care, perinatal data, workload | By: Helga Perry

This is the title of a report by Daloni Carlisle in E-Health Insider, examining the problems with hospital maternity systems. Our very own Rupert Fawdry is one of the clinicians interviewed in this report, which highlights the amount of data re-entry overload, inefficiencies, lack of interoperability etc.

There is also a school of thought that says the IT systems that have been developed around collecting the existing maternity dataset will never really deliver what maternity services and women need, because the wrong data is being collected and the classification of that data is poor.

Dr Rupert Fawdry, a retired obstetrician who worked for Torex and iSoft (which are now part of CSC) calls for a complete rethink.

In a paper in the Journal of the Royal Society of Medicine, published in 2011, he argues that electronic maternity records are too rigid to ever replace the paper record, and too variable to be standardised and compatible across care settings.

“We need to go back to the paperwork and work out what we really need to collect and the terms we use,” he says.

Read the full report here

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The WISDAM of interoperability

10 December, 2012 (13:40) | Casenotes, hand held records, Initiatives, Interoperability, Paper Records, Patient-Centered Care, S.IN.B.A.Ds | By: rupertfawdry

Having seen the incredible inefficiencies whenever my 99 year old mother made her many trips to the hospital via an ambulance I was amazed that my mother, even in her own home, had so many separate paper records with her.

Even when the ambulance staff did have the sense to take the main care record with her to A&E, the hospital staff totally ignored it (and twice lost her hospital records – giving her the same antibiotic twice four days apart as they were unable to access her previous A&E records that were locked in an office waiting for the secretary to put on the computer;  and lost her ‘not to be resuscitated’ form, which we had to get the GP to re-write; and claimed, even after scores of admissions, not to have any record that she had gluten intolerance and therefore gave her ordinary bread etc, etc)

A similar stupidity used to happen when hospital maternity staff frequently ignored the small hand-held GP maternity co-op card.

35 years ago in Milton Keynes, then in the whole of the West Midlands and then everywhere throughout Britain, maternity services have made the hand-held record the antenatal master copy.

As a result, antenatal care has gradually become much more interoperative throughout the UK (the only group of people having medical care about whom this may be said), all other groups of patients having both multiple paper documents as well as electronic records in incompatible silos.

There is a general delusion that eventually all health and social care electronic databases will “talk” to each other. But if  Santander has had to give up its bid to take over many RBS bank branches because of the cost of reconciling two comparatively simple banking systems, what possible hope is there of paying the trillions of pounds which would be required to write the thousands of lines of computer software code it would take to reconcile all the hundreds of NHS and Social Care electronic database silos.

Don’t kid yourselves. It will never happen.

I am currently working on the concept of what I am calling the WISDAM unified patient held core record (W.I.S.D.A.M. = With Individual – Social, Demographic And Medical record).  See http://wisdam.info  for further details.

Although such a concept would not improve A&E efficiency and reliability of the handovers for every patient, there is no doubt in my mind that such a revolution would help significantly in the care of every mainly housebound or institutionalised patient in the UK (and even internationally), especially if such patient-held paper records contained:

a) sticky labels of the patient’s basic medical details which could be used by ambulance crews to reduce time spent on filling in forms about such things as the name of the next of kin, long term medical problems and handicaps, and the name of the patient’s Primary Health Centre etc

b) if the same information were also printed as QR codes which can be read by any smart phone – in time, software could be written to allow the data to be easily transferred to any hospital computer anywhere in the world without someone having to key in all the same information over and over and over again.

Such an innovation would save a great deal of the time currently spent both by paramedics and by A&E staff entering the same information on multiple different forms and into many incompatible computer systems.

 

The above is an expanded version of my comment on a recent article in National Health Executive entitled ‘Zero Tolerance’ for Ambulance Turnovers.
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The WISDAM of crowds?

15 November, 2012 (09:55) | hand held records, Initiatives, Interoperability, Paper Records, Patient-Centered Care, S.IN.B.A.Ds | By: Helga Perry

We’re about to launch a new wiki initiative, taking into account the fact that the future will not be entirely paperless/paper-light.  We call it WISDAM:  With Individual: Social, Demographic And Medical

Most current healthcare and social ICT systems are based on institutions or organisations.   The WISDAM concept is based on the fact that the master copy of all health and social care records must in future be based – NOT on institutions or organisations – but on each individual person.

We’ll be posting more about this soon, but meanwhile see work in progress at http://wisdam.info .

 

 

 

 

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Patient’s View of OpenNotes

8 October, 2012 (10:27) | EPR, Information needs, Initiatives, Patient-Centered Care, workload | By: Helga Perry

There’s an interesting opinion piece in Annals of Internal Medicine by Michael Meltsner, about his experience as a patient of the OpenNotes project. OpenNotes is an American initiative inviting patients to read the notes written about them by their healthcare professionals during consultations, and it works with any electronic or paper-based systems.

Regarding the actual note-writing, Meltser comments:

Doctors are concerned that writing notes patients can read may take up valuable time and stimulate questions that in turn will take time to answer. Such concerns are serious, but data from the OpenNotes project strongly suggest that they are overblown. Doctors already have to take notes and answer questions. The key here is not more or less time, but best practices. Is it not better in most cases to have an informed patient, one who can correct errors, clarify confusion, understand the effects of medications, and be able to discuss specific treatments with family and friends? If a greater flow of information is a valuable adjunct to improved care, including patient adherence to instructions, then using terms laymen can grasp is worth the effort. Obviously, it’s an effort that must engage medical educators who will have to help free future doctors from jargon and technobabble.

And on the subject of  accessibility:

For notes and records to be truly open, ways must be found to include patients who are not computer-based.

Well worth getting hold of the full article.

Reference:

Meltsner M. A patient’s view of OpenNotes. Ann Intern Med. 2012 Oct 2;157(7):523-4. doi: 10.7326/0003-4819-157-7-201210020-00012. [PubMed link]

Suggested further reading:

Leveille SG, Walker J, Ralston JD, Ross SE, Elmore JG, Delbanco T.  Evaluating the impact of patients’ online access to doctors’ visit notes: designing and executing the OpenNotes project. BMC Med Inform Decis Mak. 2012 Apr 13;12:32. [free full text]

 

 

 

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