Unique Selling Points
Crucial ‘selling points’ for the wisdam initiative
Built on years of personal experience
A wealth of experience
HP has had many years experience as an electronic resources librarian with detailed experience of the problems of electronic patient records and of the classification of information. Medical / healthcare library & information science; cataloguing; indexing; online searching; proofreading; translating from German into English; academic and scientific writing.
RF has served on virtually all UK national maternity notes and IT projects over the past 30 years. From 1990–2001 his expert medical knowledge was used by Protos (subsequently taken over by Torex, then iSoft UK, then iSoft Australia and now by CSC) as the foundation for the most widely used and comprehensive UK maternity computer system. He was also the pioneer in totally re-designing the hand-held ante-natal maternity record (Green Notes); First introduced in Milton Keynes in 1984, they subsequently became the standard record throughout the whole of the West Midlands and elsewhere in the UK. Few records in this country or in many places abroad do not owe something to the 40 innovations introduced in the “Green Notes”.
Patients must be the Hub
Care must in future be based on individuals rather than institutions.
According to the government’s information strategy for the NHS, every general practice in England will be obliged to offer patients online access to their electronic care records by 2015. (BMJ 2012;345:e4905 doi:10.1136/bmj.e4905 (30 July 2012)) In that same article, Al-Ubaydli is quoted as believing that “Increasing specialisation in medicine will make patient controlled records pivotal. . . They represent an important step towards organising care around the patient rather than institutions.”
That article, like many others, assumes that the future lies with patients all accessing their own local primary health centre electronic record; although it was also noted that only about 1% of patients were so far using the internet in that way.
In an ideal world, all patient information would be documented once and properly, but incompatibility problems between different social care and primary, secondary and tertiary health care computer databases means that such unified, reliable and fully integrated digital records will remain impractical for many years - if not for ever. Thankfully, greater openness has resulted in most patients receiving paper copies of health-related letters, laboratory results and imaging reports. Considering that for over 20 years all women have throughout pregnancy possessed the only comprehensive master copy of their antenatal record, it is long overdue for all patients to own and control their individual personal health records.
In the light of the success of such hand-held records it seems unreasonable that institutionalised or housebound patients end up with several separate paper records that are not kept with them wherever they go, even when attending an A & E department for a few hours. It is long overdue for all such patients to hold a single unified paper record of the kind proposed in the wisdam initiative. (Ref. “Patient Centred Care? Paper often communicates better than computers.” Submitted to the BMJ on 26th October 2012)
Far more standardisation essential for individual care data.
Primary Data First! - with Secondary Data - Secondary
The use of digital records in the care of individual patients will inevitably require a far greater degree of electronic data standardisation. For example, for the management and audit purposes (secondary data) a single brief electronic entry is quite sufficient. For example, “What was the single main indication for this Caesarean Section?”
However, for a structured individual patient record or in a discharge letter one needs first to list ALL the factors involved in the decision that this particular patient needed that particular procedure. Only when this has been carefully documented is it necessary, for administrative purposes only, to select a single ‘main’ reason for the operation.
The wisdam initiative - unlike so many past (top down) initiatives - is totally focused on individual ‘Point of Contact’ data (Primary Data); with accurate data for Management and Audit (Secondary Data) only being collected as an invisible (but accurate) by-product for retrospective analysis. Accuracy is ensured only if data is checked.
Taking Paper Seriously
A: Importance of Existing Paper
Adequate analysis of existing paper records, forms and datasets.
The development of high quality computer systems should always start with a thorough analysis of current paper. If neglected, major problems such as we have already seen in health care ICT will continue to occur. One outcome of the wisdam initiative has already been the collection of scores of relevant items of current paperwork; for example, the collection of the questionnaires which each new patient is asked to fill in by the 15 doctors and dentists of Leighton Buzzard. Every introductory letter is different, but something useful may be learnt from each one.
B: Need for both “Chips” and “Paper”
The future lies with the right hybrid of both paper and digital records
Because digital records have major disadvantages as well as great advantages, the future lies not with ‘paperless’ or even ‘paper-light’ systems but rather with a hybrid approach such as is used in the wisdam initiative (“Paper fights back: Over 50 advantages of paper records.” Accepted for publication in the British Journal of Healthcare Computing)
The essential role of S.IN.B.A.Ds (Small standardised datasets)
Small packets of electronic data as “sinbads”
Trying to standardise the whole care record once and for all for all possible health and social care purposes has not surprisingly proved to be impossible. But it is entirely feasible to standardise small sets of flow-patterned questions and all allowable answers. For example information regarding the “Next of Kin”, or “Long term Handicaps” or “Current medications” This will be one of the most useful outcomes of the wisdam project. Find out more about S.IN.B.A.Ds here
Taking sticky labels seriously
A: Aiming for standard NHS label sizes
Three standard sizes for all NHS Sticky labels?
At present the NHS uses scores of different sized labels, which is inefficient and costly. One long-term result will hopefully be, not only standardising the sticky label dataset but also encouraging just three sizes of sticky labels (probably Standard - 21 per A4 page 6.35 X 3.81 cms, Large - 8 per A4 page 6.77 X 9.91 cms, and Small - 65 per A4 page 3.81 X 2.117 cms).
B: Other label sizes
Other standard size labels?
In other organisations, for example libraries and pharmacies, there are already other standard label printers and label sizes. The wisdam website would be an ideal place to document these differences and encourage greater efficiency in their use.
C: Standard spaces
The right sized space on every NHS form
Far too often the space made available for, e.g. name and address or for past pregnancy information is far too small. Once the size of labels has been standardised, it should then be possible to encourage the provision on each NHS form of adequate space for the information requested.
D: Labels on every loose page
Name, etc. Always Top Right on every form
1. Stapled records such as pregnancy health records do NOT need a label on every page unless at a later date there is a legal case in which case such labels can be added
2. Due to a particularly damaging past managerial decree far too often the NHS logo is placed top right on health service forms. While the NHS logo has an important role there is never any need for it to be placed top right, as too often currently happens. To avoid human error, it is essential that the patient’s name, date of birth etc. are always recorded on the top right of every loose piece of paper.
Immediate benefit from standardising sticky label data
Reducing the need to ask the same set of questions over and over again.
Once the data items proposed have been openly debated and a standardised set agreed, it should be possible to encourage central government funded standardised sticky labels to be printed in any suitable place, e.g. Primary Care Centres, Hospital A&E departments, Social Care Departments etc.
Such pre-prepared sticky labels can be used to eliminate the need to ask the same set of questions and get the same set of answers whenever a new paper form has to be filled in.
See elsewhere on this website for examples of where a sticky label will reduce data entry overload. In time, it is intended that this website will show a best buy version of each form. The availability of standardised labels immediately has the potential to reduce the time and the cost to taxpayers by reducing the time taken to complete the many separate forms so far identified as being needed for a housebound person.
QR Codes: An inter-operability breakthrough
Easy and cost effective data transfer - Paper to Digital and Digital to Paper
The simplicity and limited nature of the proposed data sets means that at the same time as the standardised sticky labels are printed QR squares could also be printed which would allow the individualised data to be read by any suitable QR code reader, thus allowing immediate access to an electronic version of the data. Click  for more information.
Complementary to existing ‘paper to electronic’ methods
Leaves a place for automatic digitisation of handwritten forms
The wisdam project is intended to complement not replace existing paper to digital methods such as digital pens.
No disruption to existing healthcare ICT systems
Simple potential to reduce the data re-entry overload everywhere.
One of the most crucial advantages of the wisdam initiative is that it in no way requires the replacement of any existing health or social care system. The output from QR codes being in the form of simple CSV sets of data, it will not take much extra work for any existing system to save data entry time and work.
Front line healthcare professionals need to provide the detail
Multiple different expert committees not the answer
Front line clinicians have such commitments to direct patient care that very few of them worldwide, especially those who work in hospitals, have enough time to spare on documenting their professional knowledge to the level of detail that is essential prior to the writing of complex computer code.
Experience has shown that expert committees cannot achieve the quality and long term development required for good primary documentation.
Using wisdom of crowds through Wiki websites
Making the best use of rare expertise
Getting the best possible flow patterning and wording is complex and time consuming and cannot be achieved by isolated individuals or temporary advisory groups. It is for this reason that the wisdam project encourages anyone worldwide to contribute to open documentation using wiki style websites.
A comprehensive approach
Immense future potential
Although the original idea was to create a single paper record for the care of my housebound 99-year-old mother instead of her many existing separate paper casenotes, it has now developed to the point where it can gradually be expanded SINBAD by SINBAD to encompass more and more areas of the medical and social history.
Increasing world travel
When travelling abroad, despite the internet, it is still safer to carry an easily readable medical record such as a wisdam record
Any language anywhere
If, (or when?) the wisdam system becomes more widely accepted, using the internet translation abilities it should gradually become possible for more and more of the wisdam sinbads, to be instantly translated into any language or even into different scripts.
Widespread concern for the care of elderly relatives
An essential need by so many?
Thousands of retired people still have responsibility for elderly relatives, and what better way for them to help with health and social care than to encourage the wisdam initiative to reach its full potential.
Emergencies at home
Always check the fridge
When, like my mother, an elderly relatives lives alone, situations arise when they may fall and an automatic call is transmitted to an emergency centre. Due to pressure of work it is not uncommon for ambulances to arrive from a different part of the country.
If for any reason the caller is not able to provide healthcare information a system already exists by which a small plastic container kept in the fridge contains minimal information. Under the wisdam proposals this plastic pot would contain clear instructions as to the location of the paper record, easily readable even when internet or mobile phone data was inaccessible.
Reduction of A & E Workload
Major reduction of data re-entry overload
My mother had to be taken to her local A & E department on many occasions, often only staying for a few hours for blood and urine tests and for various imaging reports.
On each occasion paperwork and computer records were completed afresh, yet a) she was given ordinary sandwiches to eat as staff were unaware she required a gluten free diet, b) she was sent back to her carers without any instructions or information sent with her, just an e-mail sent at the weekend to her primary health centre.
Once it is accepted that wisdam records always accompany every housebound or institutionalised patient, the reduction in the A & E workload and the opportunity for human errors would be massively reduced.
Present scanning or photocopying methods would allow copies of the paper record to be retained by the hospital, and the use of individualised QR codes would reduce the amount of electronic data needing to be entered for retrospective managerial analysis.
A potential business opportunity?
Government supplied or commercially sold?
The small wisdam dataset groups will only attain their full potential when they become universal; and they will only become universal if they are available cost free to all potential users. But there seems no reason why the detailed design of a paper wisdam record should not be copyrighted and sold commercially; and if the NHS or Social Service departments are not, at least at this stage, interested, then maybe such records could be purchased by or for individual patients through Age UK or pharmacies like Boots, with any income going towards the expenses of ‘not for profit’ wisdam charitable project. After all most people now have paper healthcare records which have to be stored somewhere.
Potential for advertisements
Adverts could be included
If wisdam records become widely used for housebound or institutionalised patients a page or more could usefully be dedicated to relevant advertising e.g. by stair lifts, mobility equipment, upright baths, wheelchairs, Age UK (On/Off + 2, 4, or 8 personalised numbers only), mobile phones etc. Income from such adverts could be used for a ‘not-for profit’ company to sustain the future development of the wisdam initiative.
Long term commitment and Enthusiasm
Spreading a good idea
To spread good ideas, one needs individuals to actively and enthusiastically promote progress through critical stages (Greenhalgh, T., Robert, G., Bate, P., Kyriakidou, O., Macfarlane, F., & Peacock, R. (2004). How to spread good ideas. A systematic review of the literature on diffusion, dissemination and sustainability of innovations in health service delivery and organisation. Report for the National Co-ordinating Centre for NHS Service Delivery and Organisation)
Government initiatives and research projects almost always have limited funding and a limited lifespan. Rupert Fawdry and Helga Perry have had, and will continue to have, a life-time commitment to using ICT to benefit the care of the individual patient. They have multiple national and worldwide contacts.