Paper or electronic journals?

Hospitals are not alone in having to come to terms with the volume of space occupied by paper records.  Shops, banks, armed services, schools, and libraries are all facing the same issues.  The Bodleian library in Oxford, simultaneously blessed and cursed by being a copyright library and therefore entitled to receive a copy of every book published in England, exploded, almost literally, in 2010 when it moved a huge store of books to an industrial estate in Swindon, as described here. 

The number of pieces of paper in the form of books, journals and files of various kinds is growing too quickly for physical storage to be feasible.  It’s a slightly obvious point to make, but I’ll bash on with it:  back in September, 1964, when the first issue of the Journal of Medical Genetics appeared,  there wasn’t a storage problem because there were no back issues of this journal.  Now, as the 50^th anniversary approaches, back issues occupy almost half of a wall of our departmental library.

When this is added to the piles of case notes currently reproducing themselves in our department, there is a serious storage problem.  It’s not quite as acute as the storage issue in the picture below, but it’s not a million miles away from it either.

 Which is better, paper or electronic?  People seem to prefer paper journals because they can be picked up and browsed. But maybe that seems better because that is what we are used to. Would people who had never been exposed to paper journals feel the same?  Unusually for me, I picked up a paper copy of the Journal of Medical Genetics the other day and had a flick through. There is no doubt that browsing through a paper version of an article, or entire journal, is a nicer experience than trying to do the same thing electronically. But then, I was brought up on paper. It’s hard to know how much of this ease of use is becauseof that, and how much reflects the fact that it genuinely is easier. We may never know.

Recently, and rather naively as it turned out, I ventured to suggest to my colleagues in Exeter that, since all the journals that we stock are now available electronically (leaving aside pre-1990 or so issues) our department would benefit from disposal of all paper journals with a move to reliance on electronic archives.  This did not go well. While some people agreed, others offered their   opposition to the idea in robust terms.

Needless to say, I remain on the side of electronic rather than paper storage and would like to put the case for the advantages of electronic journal articles, other than those related to space-saving:

• Electronic articles can be read on our PCs, where we look at just about everything else these days
• In finding a particular article, it is quicker and more convenient to go to the online index rather than go to the library and search through the rows of hard copies on the shelves
•  If individual journal issues are held loosely rather than bound, as they are in most departmental libraries, breath-holding, while you establish whether or not the issue that you want is actually there, is not required
•   If you like the article and want to make a copy, you don’t have to go through the laborious, expensive and irritating process of photocopying it
•    You can search the article electronically for any key-word, rather than scan a paper copy repeatedly for the bit that you are interested in.  This is really important!
•  The electronic version of an article can be linked directly to a patient’s electronic patient record, in the same way as a photocopied article could be filed in the patient’s notes

·      Let’s face it, we are in a period of major transition at the moment, between paper and digital storage formats. At some point in around 2163, the last piece of paper will have disappeared from Clinical Genetics Departments in the UK, but until we reach that happy state, compromise will continue to be needed. We’ll keep the paper journals (for now).

In praise of Voice Recognition Software

The first time I watched the words appear on the screen as I spoke, I was reminded of Arthur C Clarke's dictum: "any sufficiently advanced technology is indistinguishable from magic".  It is 18 months since I put my dictaphone in my desk drawer, never to be taken out again, and if it is possible to have a love affair with a piece of technology, then I believe that this would apply to me and my voice recognition software.

Here are the people who toiled for decades to make it happen, James and Janet Baker.  You wouldn’t necessarily have thought it, but they are mathematicians and the technology is based on Hidden Markov modelling- that’s all I’ll say about that.  The Bakers sold their baby to a company in the Netherlands, for stock rather than cash.  When the company went into bankruptcy, the stock became valueless.  Story here and here.  They didn't lose everything though, and they should certainly be remembered for their contribution.

The technology was ultimately bought by a different company called Nuance, and is marketed as Dragon Naturally Speaking.  I like the software so much that I am going to show their logo right here, on my blog, without any financial inducement whatsoever.

We Clinical Geneticists should think about adopting it more, in my view.  We write longer letters than the average orthopaedic surgeon and, we take some pride in them.  Pills and operations do not form a part of our treatment repertoire; instead, we have the “therapeutic power of knowledge”.  Not much, perhaps, but better, by a long way, than nothing.     

Why is it better than Dictaphones and magnetic tapes; or digital audio files, which are transferred to another country for typing?  

Firstly, it is a technological advance which, like the washing machine, the tractor and arrayCGH, is capable of freeing people (and horses) up from tasks (washing clothes, ploughing, microscopic karyotyping) that can be grouped together  under the sub-heading of ‘drudgery’.  

Secondly, it is easier to maintain one's train of thought when the words are appearing on the screen in front of you.  This is a big one for people, like Clinical Geneticists, who are given to writing long and complex letters.  I always found it quite stressful to hold the entire contents of a complex letter in my head,  mentally ticking off sections as they were dictated.  And that's before someone came into my office and interrupted me in mid-flow, after which it became downright impossible. 

Thirdly, it is very easy to insert standard paragraphs using voice recognition software.  These can then be customized and/or edited at the time of dictating, making the whole process of generating letters amazingly quick and effiicient.  

Fourth, there is more control over turnaround time.  The letter is more nearly the finished article when it has been committed to text than when it is on a tape.  And if secretaries are freed up from typing, then they will be available to help with other administrative aspects of patient care- scheduling appointments, arranging tests, keeping track of file reviews. They need not fear that they will be out of a job.

Fifth, the software is cheap.  It can be purchased from their website for the sum of precisely £79.99, that is less than 100 Euros or around 130 USD.  You can buy 'medical' versions much more expensively; or you can teach it medical vocabulary yourself, which is easy to do.   

I have to be scrupulously honest and admit that, whilst I love it, our lovely administrative/secretarial staff do not.  The main argument is that, because they have not typed the letter, they don’t have a recollection of what is happening with a particular patient; and this is a problem if the patient phones in with a query.  I wouldn’t at all dismiss that as a valid objection, but there could be ways to work round it without throwing the baby out with bath water.

Second, getting a bunch of text to paste into a standard letter head to which names, addresses, copy recipients etc have to be added is not ideal for the medical secretary.  But again, workarounds for this can be created.  

Third, the technology is not perfect: it is still fairly new.  It’s a bit slower than talking into a Dictaphone and it will be a long time before a machine processes words better than an experienced secretary.  Names, and alphanumeric strings like gene names can all be painful to transcribe, and often require manual editing.  I notice that if I’m tired or have a cold, the accuracy falls.  It uses up quite a lot of RAM and can run very slowly if memory is tight.  

Most of the problems with it should easily be fixable in time.  The amazing thing to me is that it works so well in the first place.   

Will we all be using Voice Recognition Software in time?  I think so.  It is hard for someone who has used a dictaphone for 25 years to change to it (though not impossible).  But what about a young person who has never used either?  I know which I'd choose.

My vision for Clinical Genetics database software; or, why can't paperlessclinicalgenetics be more like an iPhone?

I well remember Steve Jobs holding up the new iPhone in front of his adoring audience in January, 2007.  The presentation he gave is a masterpiece and well worth another look.  

The iPhone is a masterpiece too, and also worth another look: 

A big part of the design genius, IMHO, is the fact that no matter which application you wish to use, the way of accessing it is always the same.  You locate the icon; tap on it with your finger; and internet, email, texting, photos, notes apps, calculators, iPods, calendars, weather forecasts, angry birds or whatever open up before you. What could be simpler than that?

Here are some 'applications' that feature in the world of the clinical geneticist: 

• patient demographic data, contact details etc
• referral letters
• the much-beloved pedigree (see my post of February 14th)
• record of clinic bookings
• hand-written clinic notes
• correspondence
• consent forms
• genetic test results
• other laboratory results
• X-ray pictures and reports
• clinical photographs
• relevant articles from literature
• and so on

The picture below attempts to display my vision for a fully iPhone-ed up Clinical Genetics database software <sigh>.   You get to all of these places by a single touch or mouse click. The bits in red at the bottom of each icon show how that particular function is accessed currently in our department.  We already have an attempt at an electronic patient record in our department, through a database software called Trakgene.

OK, it lacks the style of an iPhone, but still: how much better would it be if all of these information sources were accessed in exactly the same way, like an iPhone, by a single mouse click or stylus touch?  Currently, the information is in lots of different places, and accessing them in their separate ways is a serious pain. For example, handwritten clinical notes, genetic test results and individual hospital records are all in paper files.  I wrote about pedigrees last month. Clinic bookings are currently stored in no fewer than three places:  the ePR, the main hospital system called PAS, and in a paper diary. And so on.  It's a little messy, isn't it?  

My vision for the whole process is as follows:  We take our tablets with us to the clinic, from which direct access to the database is of course available.  The referral letter is reviewed electronically.  The pedigree is viewed, edited and saved electronically and in realtime (see previous post here).  Access to the individual patient hospital file is likewise available electronically.  The handwritten clinical notes are made with tablet and stylus, using NotesPlus or something similar.  New clinic sheets are automatically pre-populated with the patient's name and date of birth,  and the clinic location, together with the date.  The clinical photographs are taken with the tablet, naturally, and are saved directly to the correct location within the database.  Pre-populated consent forms for clinical photography and genetic testing are likewise accessed from the database.  They are completed by the clinician, signed by the patient using tablet and stylus, and saved directly back.  The genetic test request forms likewise (do they have to be printed?). Back in the office, images can be accessed directly from the database without need for logging on to a separate system.  Relevant journal articles can be saved directly to relevant patient's location within the database.

One point about these disparate information sources, all accessed independently, is that all (or most of them) require separate usernames and passwords. Just to get onto my laptop I have to enter two passwords.  I have to enter two more passwords to get onto Trakgene.  I enter a password to access email.  Further password for accessing the imaging software system, PACS.  Password for individual hospital eNotes. Password for laboratory data.  Passwords to access journals.  Yes, it's fair to say that we all spend a lot of time entering passwords.  Could we do a bit of iPhone-style integration and cut the number down?  We might visit more places if we didn't have to go through so much security.

I know fixing all this is hard and expensive.  But really, nothing that I have suggested actually requires the development of any new technology. It's all out there already, and just needs to be brought together.   Steve Jobs has already shown us what we need. All we have to do is copy it.  

Pedigree-drawing software in the clinic. No mice. No keyboards.

This blog post is aimed at the lovely people who make software and databases for use by Clinical Geneticists,  though of course all interested parties are welcome to read and comment.

A current vision for processes in Clinical Genetics, not yet fully realised, is the replacement of the patient's paper file with a digital substitute. Arguably the biggest barrier to the full implementation of this vision is the pedigree. All Clinical Genetics files have a pedigree, this being the thing around which our specialty revolves. Just to break up the text and for the uninitiated, here is one:

The circles are females, the squares are males.  A filled in symbol denotes an individual with the genetic disorder in question.  An oblique line through an individual signifies that he or she is deceased.  In the clinic, names and dates of births of patients are written next to the symbol, usually underneath. It’s pretty simple.  The pedigree shown is consistent with a sex-linked disorder such as Duchenne muscular dystrophy or haemophilia. 

I believe that we should be moving towards use of pedigree drawing software in the clinic, and we should use a tablet and a stylus in the same way as we use paper and pen.  We should not be using pen and paper versions only, and we definitely should not be using a hybrid system where pedigrees are drawn using software, then printed and annotated further in the clinic, by pen.  Finally, we should not be using software that requires a mouse and entry of text on a keyboard to make it function.

Can a pedigree be replaced with a digital substitute? Well, of course it can. There are plenty of commercially available pedigree-drawing softwares: Cyrillic, Progeny, and others.  And have these digital pedigrees replaced hand-drawn pedigrees in the clinic?  No.  We clinical geneticists (and probably genetic counsellors too) are not going to relinquish pens and pieces of paper that easily.

So, why are we not using these pedigree drawing softwares in the clinic? In theory, it would be great to do so because we would have an electronic version of the pedigree which could be drawn or edited real-time in the clinic and stored, paperlessly.  The most obvious reason why we don’t use them is that mostly we have paper rather than digital files, and so why would we have digital pedigrees? But what if we had entirely digital files? There would be no case for having paper pedigrees then.  Would we use any of the currently available pedigree-drawing software in the clinic then? Probably not: anything that involves mouse navigation on a screen and typing in text boxes using a keyboard is a poor substitute for a pen and a piece of paper, and is likely to be resisted by anyone who considers body language, eye contact and other nuances of communication to be important.

Clinical geneticists and genetic counsellors as a group value their interpersonal skills.  We see patients who are afflicted with horrible genetic diseases and who are worried that their children might be likewise.  We go on counselling courses to learn how to discuss the issues with them carefully and sympathetically.  We don’t want to be fiddling around with non-intuitive software on computers when our patients are in front of us.  There is increasing concern that doctors are spending too much time on mouse clicks at their computers and not enough on eye contact with their patients.  People aren’t necessarily arguing that we shouldn’t be using electronic patient records; just that we need to keep an eye on the unintended consequences. 

How can we improve pedigree-drawing software?  There is another entry in the market for pedigree drawing software, called Evagene (further information here).  It lets the user draw symbols with a mouse, which then ‘snap to’ a circle or square.  Line connecters are then added.  It’s good but it doesn’t go far enough, because the data which should be next to each symbol are entered on the side of the page, by keyboard.  See the right hand panel of the figure below: 

 A pedigree is above all a visual thing.  The information about each person on the pedigree is always next to that person, on a paper pedigree.  It’s not and never has been down the side of the page.

There is an app for iPad users called NotesPlus.  The developers have been trying to perfect note-taking with a tablet and the results are nice.  They have symbol-drawing capability.  It wouldn’t take much to adapt their software to pedigree-drawing.  I have been in touch with them and they agree in principle.

Genetic databases with potential for a fully electronic patient record system are supplied by Trakgene, Shire and possibly others.  The database systems have an integral pedigree-drawing software, or an interface with one, along mouse and keyboard lines. 

This is what I would like to happen:  Evagene people, please could you talk to NotesPlus people to try to make your software fully tablet/stylus based?  Once you’ve joined up on this, please could you talk to the Trakgene or Shire people and ask them to integrate the result into their database software.  Then we can really start to do away with paper in files of our patients!

I’ll restate the main message here.  We would like pedigree software for the clinic, but with tablet and stylus.

No mice.

 








No keyboards.

Thank you!