Patient told no electronic record, no care

Tags: EPR London Mental Health RiO

02 Jun 2009

A North London Mental health trust has said that any patients who refuse to have their data entered onto electronic patient records will not be able to receive treatment.

Barnet, Enfield and Haringey Mental Health Trust told a patient who asked not to have an electronic patient record that it would be impossible to provide care without using an electronic record.

The trust says that its RiO EPR system has entirely replaced paper patient records, making it impossible to provide care without using the system apart from in the most exceptional circumstances.

A trust spokesperson confirmed that the director of strategy and performance had written to a patient explaining that the trust had a legal requirement to maintain local patient records, and now only did this electronically.

The upshot, the letter explained, was no electronic record, no care: “If a service-user refuses to have the necessary information recorded in the electronic care record then, due to the above legal requirement and duty of care the trust would be unable to provide treatment.”

The trust told EHI, “CSE Servelec's RiO is the care records system we now use. It is part of the national programme for IT, but currently we do not share patient’s demographic details across the NHS through use of the ‘Spine’ provided by BT.”

A spokesperson said that the concerns most patients had related to fears about their record being held on the planned national care records system, rather than the local RiO system.

“People confuse the national record system being developed by NHS Connecting for Health with RiO the system we now use. We don’t keep paper records anymore.”

The spokesperson said when the difference between the two was explained patients were almost always happy to have a local electronic record. They acknowledged though that the eventual plan was to connect the local system to the national care records system.

The spokesperson said that under exceptional circumstances the trust could anonymise a patient’s electronic record, but would not offer them the option of paper records.

“In exceptional circumstances where a patient does not wish their name to be linked to a medical record on RiO, if the clinical team agrees, information about their treatment can be maintained in an anonymised manner on our electronic system.”

If a patient did request to stop having their details recorded electronically, or anonymised, the trust would seek to convince them of the benefits, said the spokesperson. “We’d seek to persuade them that we have to use RiO to provide their care.”

The trust made clear that a decision to anonymise would not be automatic in response to a request by a patient, but be based on a determination made by the “respective Assistant Director and Associate Medical Director of the service the staff member is referred to” about the individual and circumstances.

“The decision to offer anonymisation will be based on an assessment of the individual’s circumstances, clinical and social. If a person’s fame or celebrity was likely to adversely impact on their treatment should it become known; then we would agree to anonymisation. However, no ‘paper based’ alternative to the electronic record is available.”

The trust concluded its statement by stressing that it is a legal obligation to keep a legal record of treatment and all patient records at the trust are now electronic.

“If this was explained to a patient who has ‘capacity’, and they understood, but still insisted that no electronic record could be made of their treatment, while we would be willing to treat them, it would only be under conditions of appropriate clinical governance which includes keeping a safe and secure electronic record of their care. To decline this would be to decline treatment.”

Jon Hoeksma

Reader's Comments

Celebraties have more rights?

02 Jun 09 14:06

QUOTE - “The decision to offer anonymisation will be based on an assessment of the individual’s circumstances, clinical and social. If a person’s fame or celebrity was likely to adversely impact on their treatment should it become known; then we would agree to anonymisation. However, no ‘paper based’ alternative to the electronic record is available.”

This raises a number of questions :

1. Why might anybody's records become known?

2. Why is it not the right of the patient to ask for anonymisation?

3. Why should a person's social situation make any difference to their wish to remain anonymous?

4. How can this work over time? I may not be worth protecting now, but even a non-entity like myself may one day win some "got talent" contest - what then once I am a luminary for the masses, and my information is already out?

I have to say a comment like this makes me very concerned indeed, to quote Deep Purple - "Theres a law for the rich and one for the poor. And theres another one for singers"

Patient choice

Neil.Bhatia@nhs.net

02 Jun 09 14:06

"They acknowledged though that the eventual plan was to connect the local system to the national care records system."

Will patients be able to prevent this happening to their record then, should they wish to?

Neil
www.nhsdatabase.info

national database

02 Jun 09 20:06

Mental health patients have to deal with enough stigma as it is. What happend to patient choice, your health, your say etc?

We have all paid into the NHS without choice, the money was deducted from our salaries so we should have the right to decide where information about us is stored.

When this information goes onto a national database, the government is determined to have that, we then face the stigma when we require general nursing care. I was told off for self harming and going to hospital whilst an important football match was under way, aother time for it being a nice Saturday afternoon!

Respect and dignity are what we should be able to expect fro the NHS but it seems they can now share anything they now about us with whom they like. Once this sytem is up and running it opens the doors fro information to be shared willy nilly .. then they wonder why we don't trust them!

Denied NHS treatment

02 Jun 09 21:06

If the patient was denied treatment then he should sue the health service. It is a national Service paid for by the taxpayer and they cannot deny treatment to anybody.

Sue them and have the senior staff fired this is nothing but fraud (taking money under false pretences).

Choice? What choice?

maryhawking@tigers.demon.co.uk

03 Jun 09 07:06

I am sure it was not intended, but the consequence of introduction of electronic patient databases would seem to be to deny patients choice in some important areas.

Take PDS: it is possible for a patient to declare themselves "sensitive" and get the address, contact details and GP concealed on the spine: however, this means that they cannot utilise any Spine function such as Choose and Book (and some Trusts only accept C&B referrals), GP2GP (patients won't miss that one!) or ETP (which is intended to become the major if not only method of issuing prescriptions).

I am not sure that anyone has considered the issues involved with EPRs - or the safety issues in mixed record systems.

I have a good deal of sympathy both for the Mental Health Trust and for the patient, but *is* it safe to have one or a few patient(s) using a different record system to the rest of the patients?

Some years ago, my practice had to refuse a patient who insisted on no electronic records as we were already paperless. At that time, the majority of local practices used paper-based records: but now AFAIAA all of them claim to be paperlite. Would that patient have any options if trying to register now? Or would he/she be able to say "I insist that my records are not held in any electronic form that allows sharing!"? What happens if the practice changes systems to, say, Lorenzo Regional Care - and, by design, the GP record is shared with all health care providers in the local area?

Sometimes Choice in the NHS sounds like Henry Ford - "any colour you like - provided it's black!"!

Nothing new

stressfreedave@hotmail.com

03 Jun 09 10:06

This sort of treatment is nothing new and having been through something like this (not mental health, but for other treatment) with NHS Grampian I know forced consent (which is what it is) is widespread. I only managed to sort out part of my issues after my GP and Information Servicies Division (Scotlands equvilant of SUS) interviened. Perhaps the patients GP contacting the hospital making it clear they will be held responsible for harm to the patient if they continue with their attitude towards the patient would help.

2009 not 1909

03 Jun 09 10:06

Has anyone tried asking a bank to manage their account using only paper ledgers?

Lazy parallels are frequently drawn with financial industry systems - "if banks can do {big computers} why can't the NHS"? However I think this is an instance where comparison is informative.

For example concerns over the accuracy of credit records and their dissemination closely mirrors those over sharing of medical histories.

There is the ever contentious compromise between individual confidentiality and protecting a system from misuse - e.g. substance abusers reselling drugs, Munchhausen syndrome etc.

Finally whether commercial and forensic fishing expeditions on these data (be it identifyable or anonymised) can be tolerated is [sadly] not a once and for all decision - and vigilance against ever wider (mis)applications of these data must be maintained in perpetuity.

Malcolm H Duncan

returning to the real world...

03 Jun 09 11:06

in what walk of life do you have any oportunity to insist that an organisation work a special process for you, just because you dont like the idea of being on a database? Tried getting a bank account? having goceries delivered? or mains water? electricity? Perhaps you would like your statements hand-written on vellum?

It may have escaped the notice of the contributers to this discussion, but companies need computers to manage their buisness. This includes the NHS, and even - shock horror - Mental Health Trusts. They need this system - which is NOT connected to the SPINE - to book appointments, ensure resources are assigned correctly, charge thier clients and a thousand and one other daily requirements.

I particularly liked the contribution of the GP above. So its OK for a GP to refuse to treat a patient who refuses to have their information recorded electronically, but not for anyone else? So we'll just chuck out our last 10 years work then?

Spine

03 Jun 09 16:06

But it will be connected to the SPINE in due course.

And their records will be widely accessible.

And you can be sure that patients won't be asked if they are ok with their records being connected to (or migtated to) the NHS Database.

No choice (again) I imagine.

Public healthcare and patient "rights"

04 Jun 09 08:06

Why is this even news? Ah yes, the frenzy about "privacy" which turns your old fashioned clueless spoiled-child crank into a tabloid darling...

Your NI payment or British residency/citizenship gives you the right to use NHS services.

It doesn't give you the right to:

1)dictate what those services should be

2)dictate who your care providers should be

3)dictate what treatments/drugs you are offered or receive

4)dictate when or where you receive services

5)dictate what delights the hospital kitchen serves up

Why then do some people then expect they should have the right to decide how their NHS services are managed or administered on an individual patient basis (vote on your local trust board elections if you want to influence process by all means)? And how exactly do they expect these individualised processes to work? And who will pick up the tab for all the extra case managers such a system would need to be safe?

"Certainly sir, just ring this little silver bell and your personal concierge will bring you your paper record on a silver tray".

Your NHS is a bloody fantastic system by world standards, with excellent care from excellent staff in very good facilities, and great equity and timeliness of access. If you don't want to be treated just like everybody else, what are you doing in a public health facility? Go build your own hospital...

RE: Public healthcare and patient "rights"

stressfreedave@hotmail.com

04 Jun 09 13:06

The reason privacy is so important is because it is information about you that very few people know and there is going to information that you do not want others to know.

Patient rights might seem to get in the way, but if the databases are designed right, then patient rights, i.e. human rights, are not a problem.

I for one do not have a problem with my GP or hospital using computers, but I do have a problem if the information about me ends up on a system that allows others to have access.

Simply because others role over and put up with it does not mean everyone should, following the crowd does not always lead you in the right direction.

The idea that patients should ether except the fact their data will be shared or risk the consequences, i.e. death, is not something I think the public would find moral or ethical. How can saying no to treatment be better for patients?

Medical Care first -IT second

paul.dunning@ulh.nhs.uk

05 Jun 09 09:06

This goes against the principles laid down in the GMC's 'Good Medical Practice' and does leave the Medical Director of the Trust open to referall if he supports such a policy.

IT should support and enhance medical care. It is not an end in itself.

Aren't there different issues here?

maryhawking@tigers.demon.co.uk

05 Jun 09 09:06

There seem to be a number of different issues here: would it be useful to look at them seperately?

1.some electronic records - especially demographics - are neccessary for administrative purposes, and this story is not about PDS but about mental health records.

2. the patient appears to have objected to clinical data being held in an electronic system where it would be shared across a large number of different people and organisations. We don't know the grounds for the objections which could have been specific e.g. neighbours, family, friends or enemies known to work in the Trust; publicity over NHS loss of data and other confidential data turning up in Omaha; or general distrust of large databases, rational or slightly paranoid.

The fact that RIO is not yet linked to the Spine does not appear to have been the issue for the patient.

3. The Trust said - quite reasonably - that they could not safely treat a patient who refused to have his/her records held in the way the Trust holds its records i.e. electronically.

4. Under the NHS, the patient has a *right* to treatment *and* confidentiality: but the Helen Wilkinson case showed, I think, that it is not possible to not record patient identifiable services in any situation where transactions are recorded for management, governance and financial purposes.

Have we reached an impasse?

As a GP, I am a strong supporter of electronic records, but the model of GP records where the EPR - as previously the Lloyd George envelop - is held in one small silo, is not applicable to a Mental Health trust where care involves a number of different people in different organisations - and, to provide good care, many different people need access to the clinical record.

The more people who have access to a record, the greater the risk of intentional or accidental breach of patient confidence - but on the other hand, *is* good, joined up care possible without information sharing, and, in a mental health situation, this will mean sharing the record as a source of information, whether or not it is a SSEPR (or record of prime entry).

So where do we go from here? Electronic records have changed (and greatly improved) care in General Practice.

The easier it is to access information, and the more people with the opportunity to do so, the greater the risk of confused records (GP and psychiatric definitions of depression differ) and breaches of confidentiality.

On the other hand, the improvement in care when records are accessible, care plans can be shared, and areas of responsibility clearly identified cannot be underestimated.

PS This problem is not confined to the NHS. Friends who practice in New York tell me that patients consult a lawyer before a doctor about suspected HIV..

What a strange thing to assert!

marvin_littlewood_426716@yahoo.co.uk

05 Jun 09 11:06

"Barnet, Enfield and Haringey Mental Health Trust told a patient who asked not to have an electronic patient record that it would be impossible to provide care without using an electronic record."

What a strange thing to assert! Of course treatment can be provided. What cannot be provided is protection to the trust against future law suits and other matters dependant on an up-to-date medical record. Apparently to deny care because a trust fears it cannot protect itself is disturbing to say the least.

The Caldicott report demonstrated that there are many recognised and unrecognised flows of patient data out of the NHS to other organisations. Rightly a patient with a highly stigmatising illness has asked for protection from these flows, which unfortunately appears to be at the least difficult and in all likelihood impossible.

A simple set of rules could be applied here, which would satisfy all needs:

1) Separate person identifying data from clinical data in how patient data are represented.

2) Provide only those clinicians to whom a referral for care has been made, with person identifying data.

3) Close access to person identifying data (but not to clinical data) when the patient is discharged from a clinician's care.

Of course NPfIT, as currently specified, cannot guarantee this approach would work. But there is no reason not to move in this general direction. Rules such as these could help solve the impasse between confidentiality and the need to share clinical data.

Why would a patient not want an EPR?

05 Jun 09 19:06

I am puzzled. Why would a patient want to stop doctors looking at his past history, if it is going to help his clinical care? I speak as a patient in a hospital specialising in one particular disease, who has noticed the difficulty that the doctors looking after me and other patients on the ward have in accessing details of treatment in other general hospitals. There are lots of excuses: the hospital systems are incompatible or the records of the other hospital are on paper and therefore inaccessible. To me, a suffering patient, this is a scandal which can be resolved by standardised EPRs. If there was the will to do it.

Sadly, I have come to the conclusion that the doctor/patient confidentiality argument is a protection for doctors. I have never heard a patient say that he doesn't want his medical record accessed if held in another hospital.

Almost always happy ?

njames@gotadsl.co.uk

05 Jun 09 20:06

I particularly like the "patients were almost always happy" quote which by inference means this has happened before but perhaps those who were in the not happy group were sufficiently cowed by the threat of not being treated to acquiese.

Does no one think that perhaps the 'what' is being done and the aims should be better explained to our service users. This kind of negative publicity rather drops us in with such dubious creatures as the national DNA database record or the rather furtively introduced national networking of fixed position ANPR cameras. (next time you're rushing into work to answer an emergency call remember all of those roadside cameras may well be tracking your progress and average speed)

Good publicity should be starting with us, we are doing great and quite amazing things but no one will know or really understand and so support, and actively participate in them them unless we start shouting about it.

Personally I'd like to see anyone giving a bona fide patient this kind of treatment (well not giving I guess) out on the street. It reflects badly on us all.

Are paper records more secure then?

philgooch@gmail.com

08 Jun 09 10:06

For those advocating an opt-out from a shared, electronic record, what makes them think a paper record is more secure? In the paper days, each service would enter the patient data into their own database in any case - there was always an electronic record of some form.

Paper records can be photocopied, taken home, left on other wards, left in the canteen.

Would people feel happier with stone tablets perhaps?

Negligence

zabeda@esp-it-consultancy.com

08 Jun 09 10:06

The purpose of developing and implementing electronic systems is to enhance care and to ensure that healthcare professionals have better information about a patient and to deliver appropriate care at a faster time. It is not to refuse care. Would this be a form of negligence on the part of the trust? Patients do have a choice with their healthcare records.

Will Insecurity become a major issue

neiljam69@yahoo.co.uk

09 Jun 09 22:06

The debate on electronic patient records and its progression to a national care record system seems to be focused on Dr/patient confidentuality and trust and patient choice. However if these are eroded will an atmosphere of insecurity be created?

The insecurity of losing privacy, and now possibly being denied care could effect in the long term the openess of the Dr./ patient relationship. So will this change and the patient will not disclose all their information or seek help for certain medical conditions?

What do you think?

RAre paper records more secure then?E:

stressfreedave@hotmail.com

13 Jun 09 22:06

Computer records can be more secure but it is not that simple a choice. It is about access to the record that is a concern, and once you join tevords up electronicly there is a lot more people with access to data they would not have had before.

There are some things to remember/think about: 1) Electronic information also goes missing. 2) In Bury the SCR (which contain last 6 months of all prescriptions) were apparantly being printed off by admin staff and were stuck on the end of beds. 3) Laws (such as Section sixty) allow greater access to records, and once applicants for SS get consent (not the patients consent), accessing electronic forms is far easier. 4) Access to information will be increased to the point that people will have access to data they never had before (i.e. if you do not have a SCR and need to go into A&E all they will get is the information you have on you, but with a SCR the same person will know far more, assuming they are not to busy trying to save your life to look at your record.