Clinical Genetics for hospital administrators, medical directors and IT solution providers

Occasionally in my darker moments I have the feeling that, in certain sectors of hospital practice (HAs/MDs/ITSPs to give them an abbreviation), Clinical Genetics will never be understood. It is paradoxical because on the one hand, genetics appears to be climbing ever higher on the political agenda (see eg this article); but on the other, Clinical Geneticists often feel that their existence is, if not mystifiying, then downright annoying to HAs/MDs/ITSPs .

With this in mind, and wishing to dispel mystification and annoyance wherever I find it in hospital corridors, I have written these briefing notes about Clinical Genetics, focussing in particular on how this specialty differs from the more well-known, mainstream ones.  These notes are mainly for the lovely people at Epic, who have kindly agreed to talk to me by teleconference next month.  The subject of our discussion will of course be IT systems for Clinical Genetics and my hope is that Epic will be able to devote a small fraction of their resources to helping me realize my vision.

In one respect, of course, we are just the same as all other medical and surgical specialists, in that we try to find a solution to the problems of the patients who are referred to us- and there is no shortage of either of those commodities.  This article is about the differences, however.  I am going to try to explain what these are in the hope that giving people an understanding of how we work will enable them to help us more effectively.

Significant difference #1

Clinical Geneticists do not, as a rule, operate on patients, give them drugs or manage their illnesses.

Our role is in the realm of diagnosis, genetic testing and giving out information based on genetic test results.  We are often particularly concerned with making an accurate diagnosis  of an illness or condition so that we can advise other family members of their risk of having the same condition. For an example, please refer to my previous post which describes referral of a patient at risk of Huntington's disease.

Significant difference #2

We have case files for families, not individual patients

This is a really odd one at first sight.  It is very hard for HAs/MDs/ITSPs to deal with because we are absolutely the only specialists who do this.  It makes sense to us, though, because the “unit” of a genetic disorder is not the individual with the disorder (the “index case”), but his or her entire family, comprising all of those individuals who are related to the index case and who are at risk of the disorder in question because of this relationship.  This can be and sometimes is a very large number of people indeed.

The structure of the family file is pretty simple- it is made up of a number of individual patient files which are not that different from a standard patient hospital file.  (See here).  This is not the same, though, as a number of patient hospital files being “linked together”.  (See here).  

Of course, family members will insist on complicating the system by moving around between different geographical areas.  In general, therefore, a family file will contain individual entries of two types: first, individuals who are at risk of a genetic disorder and who reside in the geographical area covered by that particular genetics service; second, family members who have the condition in question, making them important for the purposes of confirmation (see here), but who reside outside the geographical area covered by the service.

Significant difference #3

We cover geographical areas which are much greater than those served by the majority of specialists from the hospital in which we are based

Take our service as an example.  It covers the counties of Devon and Cornwall in the Southwest of England:

This corresponds roughly to the area within the rectangle.  Each red blob represents a city or town with its own hospital.  The Regional Genetics Service is based in Exeter; Consultants and Counsellors travel to the other hospitals within the region in order to see patients.  We would prefer to get them all to come and see us in Exeter but this would not be considered acceptable in terms of providing an equitable service over a geographical region.  Of course, we are not the only specialists to use this hub and spoke pattern, but perhaps we are unusual in that our service was set up in this way from the outset.

That's enough significant differences.  Put them together, though, and you have something which, in terms of administration, IT solutions and so on, is a headache.   It's bad enough for ITSPs who are trying to provide eNotes/ePRs for the mainstream services.  Huge efforts are going on to try to realise that and it is not easy.   We Clinical Geneticists would like to be part of that but we would like to have our differences recognized and built in to any hospital-wide system.  For that to happen, the architecture of our service (and of our case files) has to be appreciated.  So, if you are an ITSP and have got to the end of this article, then I'd like to offer my sincere gratitude- and the hope that some of your mystification and/or annoyance has in the process been dispelled.

Access to medical records and patient confidentiality

I have been in contact with a company called Epic about the possibility of an electronic patient record (ePR) for Clinical Genetics.  Regular readers of my blog will be aware that this is a subject which is dear to my heart.

Epic have many customers in the US but so far relatively few in the UK.  I wanted to know how they might be able to help with a Clinical Genetics ePR and wrote:

“We are a small specialty with some unique features (most obviously, that each file is in fact a family and not an individual patient file) and therefore I would very much like to liaise with someone in your organization at as early a stage as possible, to see how this would work.”

The reply drew attention to an issue which deserves some closer analysis: 

“Epic takes more of a patient-centered charting approach with the ability to document Family History, and many organizations are beginning to request the ability to display pedigrees and link family member records together.

While there is a definite clinical advantage to linking the charts, we are still hearing a lot of concerns about confidentiality and sharing of patient information across records.”

I would like to try to unpick this a bit. 

Clinical Geneticists often need to access the medical records of a relative of a patient who has been referred to them.   The reason is usually to confirm the diagnosis in question.  For example, a referral letter may state something like:

“The father of my patient is in the early stages of Huntington’s disease.  Please test her to determine whether or not she is at risk”. 

For the purposes of giving genetic advice to a relative, the diagnosis of Huntington’s disease is not something that can be taken at face value but must instead be confirmed by access to the medical records of the individual concerned.

The reason is simple.   If we test the daughter for Huntington’s disease and the father has not Huntington’s disease, but rather Dentato-Rubral-Pallido-Luysian Atrophy (this is a real disease), then we will be providing her with false reassurance when the test result is negative, as it surely will be.  Hence the necessity to check the father’s medical records to confirm that the information provided about him is as stated.

The main point as far as confidentiality of medical records is concerned is that no Clinical Geneticist or Genetic Counsellor will ever seek to obtain access to a relative’s medical file without first seeking the consent of the relative in question.  This is a nuisance but it has to be done.  Failure to do so would put us in the same broad category as the journalists from the News of the World who used to ring round GP surgeries to find out if Gordon Brown’s son had cystic fibrosis.

The suggestion from the email response from Epic is that people are requesting “the ability…to link family records together”.  Linking family records together is not the same as getting consent for access to the file of a relative, getting information from that file, and then putting this information in the file of the patient who has been referred to you.  In the latter scenario, there is no linking of files.

Consent to access medical records is given by relatives for a specific reason and usually to a specific health practitioner.  The wording of the consent form currently in use in our department is as follows:

“I…give permission for information from my medical records to be released to…”

There is nothing in this wording which suggests that information from the relative’s file will be made available to any clinician looking in the referred patient’s file for the remainder of the lifetimes of all relevant parties. If the wording were intended to mean that, then it would have to say it, and I doubt if many individuals would then consent to it.

It is a moot point whether or not the consent provided by the relative is time-limited.  There is nothing in the consent form to provide for the length of time for which consent to access is given. It is fair to say, though, that if further access were required some 10 or 20 years later on, further consent should be sought.

  

One additional point about electronic versus paper access is worth making:  in the Information Governance Review which I discussed in last month’s post, I referred to this recommendation:

Recommendation 1 
People must have the fullest possible access to all the electronic care records about them, across the whole health and social care system, without charge.  An audit trail that details anyone and everyone who has accessed a patient’s record should be made available in a suitable form to patients via their personal health and social care records. The Department of Health and NHS Commissioning Board should drive a clear plan for implementation to ensure this happens as soon as possible (p32).

In the world of electronic patient records, every access to the record of every patient is documented in an audit trail.  Audit trails can be looked at and checked, yes, even audited.  Any access to records has to be justified by the individual who makes it. 

So, lovely people at Epic and elsewhere, please be advised that we do not wish to link patient charts together on a permanent or even a temporary basis. We wish to be able to have access to the stand-alone, unlinked files of individuals who have not been referred to us, having obtained their consent to do this. We then wish to obtain information from these files which we will copy and store in the file of the referred patient.

We would like to have special Clinical Genetics ePRs, though, which are separate from the patient's regular hospital file.  I don't believe that trying to make the regular hospital file double up as a Clinical Genetics file will work.  Maybe you can convince me otherwise, though?   

One thing that this little debate highlights is that ePRs have the potential to allow different ways of doing things.  No-one in his or her right mind would ever advocate the permanent linking of paper files, given the fact that it wouldn't take too much linking before a fork-lift truck were required for transportation.  But electronic files do allow for this possibility, even if it is not something that is necessarily desirable.  Interesting times ahead.

Wouldn't emailing letters to patients be better than posting them?

I have pretty much the same thought every week, just at the point when I have dictated another patient letter (using, needless to say, voice recognition software), and saved it to the file from which my lovely secretary will open it, add addressees and demographic data, print it, put it in an envelope and post it.  And the recurring thought is:  wouldn’t it be a lot quicker, easier, cheaper and better if we just emailed it instead?

I spoke to the Information Governance Manager at our Hospital Trust about this.  Don’t worry, first I had to find out that he existed before I could speak to him.  But he was helpful, and one of the things he told me is that emailing letters to patients is perfectly ok. This surprised me, but it is true: in some circumstances it is even actively encouraged.  He sent me a copy of the Information Governance review, chaired by Dame Fiona Caldicott and published in March, 2013.  It’s available here.

On page 28 of the report, in chapter 2, which is entitled ‘People’s right to access information about themselves’, there is a case study which I have reproduced below.

This may be an unusual example, but that’s not really the point.  The point (for me) is that people who have been tasked with advising about Information Governance are ok with people being emailed.

The Review Panel concludes that "personal confidential data can be shared with individuals via email when the individual has explicitly consented and they have been informed of any potential risk." (p.28).

Well, that was news to me.  But as it turns out, our NHS Trust is in the process of developing a consent form, in which the conditions for use of email for communication between doctors and patients are laid out.  The agreement to use email is entered into at the request of the patient; possible security risks are understood; and the patient must email the Trust first to ensure that the correct email address is used.  It seems reasonable to me.

This is great.  I can email letters to my patients- if they want me to.  I would certainly prefer to, but I’m not sure how many patients would want that.  Some would, I’m sure, but we are a long way from having systems in place that could make this routine practice, in our department, anyway.  There is not (yet) enough digital healthcare in the NHS to create an expectation amongst patients that we would email rather than use paper mail.  Patients ask me to email them only very occasionally.  The ones who are noticeably well-organized about their healthcare (often because they have a very complex condition) often arrive in clinic with A4 ring binders containing large chunks of their medical records.  They still want paper to add to their files and email isn't for them, at the moment (but see below). 

There are security concerns about email but it’s worth noting that the Information Governance review did not find much evidence that this was a problem in practice.  There’s no shortage of serious data losses, it is true, but these do not occur in the context of a data sharing agreement between patient and hospital .  They are more of the ‘laptop left on train’ type.  Chapter four of the report contains further details.

Widespread non-use of email is frustrating, though.  I dictate the majority of my letters within 24 hours of seeing the patient.  The text and layout of the letter are complete, but often the letter doesn’t go out for a couple of weeks or so after that, sometimes longer, because the members of our long-suffering secretarial team are over-stretched and have a constant back-log of work to deal with.

Paper mail is just so clunky and cumbersome.  How much money is spent in the NHS on paper, printers, printer ink (one of the most expensive commodities in the world?), envelopes, and franking machines every year, I wonder?  How much time is spent by secretaries, printing these bits of paper out, folding them, putting them into envelopes and standing at photocopiers making copies for the patient’s file?  How many people does the NHS employ to lug all these sackfuls of paper around?

There’s another bit in the Information Governance report which I found interesting: 

“Recommendation 1
People must have the fullest possible access to all the electronic care records about them, across the whole health and social care system, without charge.  An audit trail that details anyone and everyone who has accessed a patient’s record should be made available in a suitable form to patients via their personal health and social care records. The Department of Health and NHS Commissioning Board should drive a clear plan for implementation to ensure this happens as soon as possible.” (p.32).

We won’t even need to email patients if that vision is realised- they’ll be able just to log on and look the letter up.  Now that would be progress.

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!