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:
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.