The whole thing has been a shambles from start to finish. Not really surprised at this latest development.
words of WISDAM from the Electronic Encyclopaedia of Personal Data (EEPD)
The whole thing has been a shambles from start to finish. Not really surprised at this latest development.
The WISDAM Personal Health record is now available for purchase. Cost is £14.50, including shipping & handling. It comes with a free “Pack of Potential Pages” and several other items under the title “Some Extra Wisdam?”
To order, please print out and complete this order form and mail it, together with a cheque, Postal Order or International Money Order drawn on a U.K. bank made out to Wisdam Enterprises, to:
℅ Dr R Fawdry
31, St.Mary’s Way
To find out more about the WISDAM initiative, please click the WISDAM link in the right-hand menu.
The latest version of our WISDAM personal health questionnaire is now available for downloading to road test – get your copy here. This free download of the standard set of WISDAM questions is intended for filing in section 5 of the full WISDAM record; however, if you just want to use parts of the questionnaire in other health/fitness/social care documents that is fine. We encourage all such uses.
An interesting systematic review has recently been published by a group of Australian authors:
HAWLEY, G et al. In a maternity shared-care environment, what do we know about the paper hand-held and electronic health record: a systematic literature review. BMC Pregnancy Childbirth. 2014; 14: 52
The authors noted “a surprising gap in knowledge surrounding data completeness on maternity PHRs or EHRs.” So the key question of whether the data are accurate and complete has still not been adequately addressed and answered in the literature.
This review is a valuable contribution to the debate on electronic versus paper records.
So a new maternity data set is due to go live in April. Will it make any real difference? Unlikely if it is still focusing on outputs and secondary uses. It all still smacks of locking the stable door after the horse has bolted. The jury’s still out on the impact of electronic records on patient outcomes.
Read a report by Daloni Carlisle in eHealth Insider. She quotes Steve Avery from EuroKing:
“We have done a lot of market analysis and there is a significant proportion of maternity units that do not have a maternity information system,” he says.
“How they manage is beyond me. It is an area where intelligent IT can make such a difference –and one where IT is just so under-utilised.”
Intelligent and appropriate use of IT, yes, and that does not necessarily mean computers. Lorraine Edwards from Cerner is quoted:
have particular ways of working that are not always compatible with sitting behind a computer. “We need to see wider uptake of digital pens and other technologies but it needs to be led and it needs to be funded.”
However, as the EHI article rightly points out, there are areas of maternity care that are not conducive to computerisation. Labour will continue to be paper-based.
In retrospect, it’s so obvious, yet no-one seems to have been ready to think through the following:
“High Security” but “Minimal Access”
i.e. access only by the owner of the record and no-one else – Never, ever any Instant Duplication of Data (but how to stop that?)
“Useful Access” but “No Possibility of Adequate Security”
Data instantly copied onto other hard disks
i.e. A salesman’s dream come true, since anything that is useful will have to be accessible to anyone authorised throughout the whole NHS.
Such electronic records, despite vociferous disclaimers, will almost certainly be sold by someone, somewhere in the whole NHS to customer-hungry advertisers – see this news item in TechWeek Europe – or eventually be hacked by someone somewhere, or left on a stolen laptop
After all, if the CIA, FBI and GCHQ cannot maintain security, how can the NHS ever guarantee adequate security?
We will then get scenarios, for example, in which advertisers bombard all patients with diabetes with e-mail adverts relevant to diabetics, or all elderly people with adverts for stair lifts, care homes or hearing aids. There’s a particularly lucrative market for hearing aids when unscrupulously sold to the confused elderly, as demonstrated by the number of totally useless £500 hearing aids that I found in my mother’s house when I was clearing up there. I discovered that my mother had bought several of these devices, despite the fact that her hearing problems were not treatable by hearing aids!
Contrast the above with
Only accessible to those with personal access to the actual paper record, or to a photocopy of the actual paper record.
These are kept, relatively safely, by the patient or safely locked in specific hospital or GP records departments. Owing to the work involved, only limited numbers of copies of a few records are ever made.
i.e. of no value at all to sales-hungry advertisers wishing to target their marketing to specific potential customers.
The latest NHS England buzzword is IDCR (Integrated Digital Care Record). Guidance, standards etc. have been published in Safer Hospitals Safer Wards – reiterating the desire for fully digitised and integrated health records across all care settings by 2018. It doesn’t allow much time for NHS organisations to submit expressions of interest in the Technology Fund, though – only until the end of this month (July 31st).
A paperless NHS still appears about as likely as a paperless loo. To what extent this latest initiative will turn into yet more plans for inflexible railways remains to be seen: the devil, as always, will be in the detail.
DRIP = Data Rich, Information Poor. We’ve long argued that too much effort is wasted on poor quality data for admin purposes, and so much good money has been thrown after bad over the years. The recent CCIO Round Table report from the Royal College of Surgeons and E-Health Insider makes interesting reading. It recognises the need in the acute setting to put clinical patient care before purely audit and management requirements:
The electronic patient record offers an opportunity to turn data into information, but systems need to be designed primarily to capture clinical information.
It also discusses record keeping standards and clinical coding, which have all too often been of variable quality. However, we would caution against over-reliance on coding per se, and stress the importance of recording the correct things accurately in the first place. It’s no good putting the right code on the wrong thing.
Michael Kauka is the CEO of Avaz Group LLC, a leading provider of patient documentation services and technology, and a vocal proponent of electronic records — by any name — and of standards of data. Here are my responses to the seven advantages of electronic records listed in his Comparison of computerized patient record CPR, electronic medical record EMR, and electronic health record EHR software. (click title to read his full article).
1. It allows for simultaneous, remote access to patient data by all authorized providers.
It only allows access to those authorised providers with reliable, constant Internet access.
2. It facilitates faster and better communication among providers.
It only allows faster and better communication among providers with reliable, constant Internet access.
3. It reduces errors which results in better health care and lower cost.
Possibly less error, but not yet proven. Installing and frequently upgrading paperwork is vastly less expensive and can have just as great an impact on reducing errors. An excellent example is the pre-surgery paper checklist, which has had a far greater and cheaper impact on improving patient safety worldwide than any electronic system.
4. Electronic systems facilitate safer data and improve patient data confidentiality.
Safer data only with reliable, constant Internet access.
I have far greater confidence in the paper record that I hold in my personal possession than any electronic record accessible a) to anyone worldwide who is “authorised” to access my record and b) to any really expert computer hacker.
5. It allows for flexible data layout and therefore integrates easier with other information resources.
The layout on paper is far more flexible and can cost effectively be far more frequently improved. The most successful examples of integrated and interoperabble records in use worldwide are paper-based: the Japanese mother-child record and the British hand-held pregnancy notes.
In theory, there may be easier electronic integration with other information resources, but only with the kind of software that is not available in most hospitals. Going through a portal into an apartment block does not mean that those accessible through the front door are an integrated community.
6. It allows for incorporation of various related electronic data, and records are may be continuously processed and updated.
This may be true in theory in a single organisation using only one system, but in practice most patients have their health and social care provided by multiple separate organisations using disparate systems that do not link to each other.
7. It makes the searching and finding of data considerably easier.
This may sometimes be the case for some types of digital data. However, give me a paper record and a collection of electronic scans of past records and I can far more easily find things like
In conclusion, given all the many other advantages of paper that I have enumerated in my article, Paper fights back, I would be a very foolish budget holder who rushed to digitalise all patient records. Paper (like the radio compared with television or bicycles compared with cars) still has many neglected advantages. Paperless records are not in the best interest of every patient.
My “Personal View” that a unified paper record of health and social care would improve communication among professionals and institutions has today been published in the BMJ (BMJ 2013;346:f2064). The publication licence allows its permission on my own website, so here is the text. Click here to view it on the BMJ website.
Pregnant women throughout Britain have a paper care record that is openly readable, easily updatable, and immediately correctable. I assumed that housebound patients would have something similar. With so many comorbidities, when else would a single paper record make such sense? My 99 year old mother’s recent experience highlighted my naivety.
She still lives in her own home. Besides friends and family, those involved in her care include her family doctor, district nurses, several social care departments, Age UK, and a private home care company. These provide food, company, and help with complex medication. But each party insists on a separate set of records, making it necessary at my every visit to check four binders without bookmarks, two separate drug charts, and several huge ambulance forms of mind boggling complexity.
My suggestion that a unified system of care records might be better has been met with such comments as, “We don’t have permission to write in each other’s notes,” and, “We’re not sure if we’re even allowed to look at documentation created by others.”
Recently, after one of her recurrent falls, my mother was with difficulty persuaded by familiar paramedics to let them take her to the emergency department. Within hours, she was insisting on going home. I soon received a phone call from the private home care company: “What had been happening? Where was her new medication?” Her tablets were eventually discovered in her pocket. A letter had been emailed to her general practitioner on a Sunday and was inaccessible to her carers. How much better if she had had her own paper record used by everyone, including hospital staff. This would have low cost; it would reduce errors at handovers; and individuals, rather than organisations, would become the hub of their own medical and social care.1
I have had to complete many forms on my mother’s behalf, each asking similar questions. I reduced my irritation by creating sticky labels that detail legal next of kin, language and other handicaps, allergies, current drugs, and so on, but this did nothing to reduce the hours healthcare staff spent re-entering data digitally at the expense of providing direct patient care. Why not print QR codes on sticky labels for the repetitive data that are needed in several places? Incompatible computer systems could use smartphone technology to read them.
How many times have we heard that the NHS will soon be totally paperless? One recent official statement is that this will happen by the end of 2015.2 In its recent strategy document the Department of Health called for information to be “recorded once, at our first contact with professional staff, and shared securely between those providing our care.”3
But this presupposes universal, secure access to integrated multidisciplinary electronic records. True interoperability and openness of care records cannot be achieved unless ways are found to include those patients and carers who do not have immediate access to the internet. Technologies now allow data entered on preprinted proformas to be automatically digitalised, stored using battery power, and later transmitted to centralised databases, but such solutions still feed into incompatible electronic silos.
Despite the enthusiasm of many, it will never be cost effective to try to make complex databases “talk” to each other. Integrating any two complex digital records cannot be done without expensive and time consuming rewriting of thousands of lines of software code. In banking, the failure of Santander’s proposed takeover of RBS branches was attributed to massive problems of cost and speed in migrating and integrating data,4 and the recent Bank of Scotland £4.2m fine came after its failure to reconcile just two incompatible mortgage systems.5
Data collection must never be prioritised above improving individual patient care,6 and record systems that put individual care first will always be unavoidably complex, partly because different disciplines have different needs. Improving paper systems is cheap compared with upgrading software. We first need to facilitate high quality paperwork. Only afterwards should we concrete our knowledge into digital formats.
Experience creating Britain’s most popular maternity record system has convinced me that the best way forward is to consider all the current paperwork used, posting it on an openly accessible website for all to analyse.7 The Electronic Encyclopaedia of Perinatal Data, which I created and maintain, is one such example (http://eepd.org.uk). A similar approach is being used in the development of a national paper drug chart,8 and will eventually be essential in every subspecialty.
For this approach to work we must, as in the United States, have a legal declaration that blank forms cannot be copyrighted.9 And every publicly funded computer system must openly document the exact wording of every question and every answer option.
Paper records have many other advantages over digital ones,10 and it is time for politicians, clinicians, and healthcare managers to reject the idea of a paperless NHS. Instead, clinical commissioning groups should insist that all housebound patients and those with long term conditions have a single personal paper drug chart and a unified paper daily care record to accompany them wherever they go.
Cite this as: BMJ 2013;346:f2064
- I thank Helga Perry, electronic systems and resources librarian at University Hospitals Coventry and Warwickshire NHS Trust, who helped with the preparation of the manuscript and references.
- Competing interests: The author has completed the ICMJE Unified Competing Interest form and declares: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work. I maintain the non-profit making websites www.eepd.info, www.eepdtalk.org.uk, and www.wisdam.info.
- Provenance and peer review: Not commissioned; not externally peer reviewed.
- Patient consent obtained.
- ↵Davies P. Should patients be able to control their own records? BMJ2012;345:e4905.
- ↵Limb M. NHS will be paperless by 2015, says commissioning board. BMJ2012;345:e6888.
- ↵Department of Health. The power of information: putting all of us in control of the health and care information we need. London: Department of Health, 2012.
- ↵Alufa O. RBS and Santander deal collapse blamed on IT problems. ITProPortal 16 October 2012. http://www.itproportal.com/2012/10/16/rbs-and-santander-deal-collapse-blamed-it-problems.
- ↵Fawdry R, Bewley S, Cumming G, Perry H. Data re-entry overload: time for a paradigm shift in maternity IT? J Roy Soc Med2011;104:405-12.
- ↵Bewley S, Perry H, Fawdry R, Cumming G. NHS IT requires the wisdom of the crowd not the marketplace. BMJ2011;343:d6484.
- ↵Academy of Medical Royal Colleges. Standards for the design of hospital in-patient prescription charts. http://www.aomrc.org.uk/projects/standards-in-patient-prescription-charts.html.
- ↵United States Copyright Office. Circular 32: Blank forms and other works not protected by copyright. US Copyright Office, 2012. http://copyright.gov/circs/circ32.pdf.
- ↵Fawdry R. Paper fights back: over 50 advantages of paper. BJHC, 29 January 2013. http://www.bj-hc.co.uk/views/views-news-detail.html?news=2371&lang=en&feed=124.