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ACB-CLIN-CHEM-GEN  2000

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Subject:

RE: (Fwd) Re: Giving results directly to patients

From:

"Breimer, Lars {PDC2~Welwyn}" <[log in to unmask]>

Reply-To:

Breimer, Lars {PDC2~Welwyn}

Date:

Sun, 16 Jul 2000 13:06:35 +0200

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (168 lines)

Dear Friends


I have followed some, though probably not all, of this correspondence and recently made a small comment, which probably just paraphrased the opinions of others because there is nothing new under the sun.

It seems to me that this question raises issues in a number of areas each of which might be taken further if the group feels this would be valueable.  

Nevertheless, ultimately, the question may boil down to between whom the contract applies, for examples is it between the patient and the lab or the patient and the requesting doctor?  Also, the whole discussion was triggered by what we would to if a relative of the patient contacted us, which is a different question and easier to answer.  Here are some further thoughts on the patient v lab question for what they are worth.

Firstly, I think that we should make a clear distinction between private practice and public service and, as a corollary, it would be interesting to know the opinions of those who practice in various systems where private practice is the major way.  In the UK private practice essentially is small volume high profit and heavily concnetrated to the greater London region, which is different to many other countries where the private model is common.

Secondly, it may be interesting to learn the views of colleagues who practice in countries whose medical cultutre is essentially similar to that of the UK.  The obvious candidates would be the Nordic countries and Holland.  Indeed, I may have overlooked some replies from there.  It is worth noting that each of the Nordic countries have different structures for their health services, so they cannot be viewed as one homogeneous bunch (ie they are more distinct than are England, Scotland, Wales and Northern Ireland.

For example, in Sweden the access to information in a patient's notes is governed by the Public Access Principle.  Briefly, if a patient is treated within the National Health System because this is a public body the patient, but only the patient, has a right to read and obtain all this information (apart from other relevant health care givers obviously).  If the patient is being treated privately, then the notes are considered the doctor's private annotations and the patient has no right to see them.  The doctor has, of course, to make the notes available to regulatory bodies such as the equivalent to the GMC (Socialstyrelses).

Thirdly, we could look at another organisation who does not really deal directly with patients but provide a service to the doctor.  One candidate would be the pharmaceutical industry because it provides drugs which are prescribed by doctors (and veterinarians to boot).

The laws, rules and principles which regulate the interaction of the pharmaceutical industry with health care profeessionals and with the public varies from country to country.  A well recognised difference between USA and Europe is that in the USA direct to the consumer advertising is allowed but this is not allowed in Europe.  In Europe much of the lead for the principles govering the whole of this area is taken from the Association of British Pharmaceutical Companies' Code of Conduct Regulations and Panel.

Self-evidently, patients or patients' relative from time to time contact the companies directly for information either about a drug or about whether there are any studies ongoing with a new drug etc etc.  Companies have procedures in place to handle these questions which essentially are that the companies do not deal directly with the general public and they instruct the patients to go to their GP or the consultant under whose care they are, who can then raise the issue with the company.  Thus, this is essentially the same as the laboratory referring the patient back to their GP or consultant.

It may be worthwhile inviting Heather Symmonds, the barrister in charge of the ABPI Code of Conduct system, or someone like Dr Tiner, the medical director of the ABPI, at the next FOCUS to discuss some of the in this context similarities and differences between an NHS lab and a pharmaceutical company.  Also, they would be in a position to recommend a first class speaker from one of the companies.


Kind regards


Lars Breimer




-----Original Message-----
From: Rick Jones [mailto:[log in to unmask]]
Sent: 16 July 2000 11:07
To: [log in to unmask]
Subject: (Fwd) Re: Giving results directly to patients



------- Forwarded message follows -------
Date sent:      	Fri, 14 Jul 2000 17:48:46 +0100
To:             	[log in to unmask]
From:           	Barry Sampson <[log in to unmask]>
Subject:        	Re: Giving results directly to patients

A further aspect of this debate is how we respond when patients 
phone
the lab asking about availability of tests.  This may be tests
required for medio-legal purposes (ie alcohol, drugs) or because the
patient has some worries that they think may be answered by a lab
test.  

My particular bete noir in this respect is mercury.  Whenever there 
is
a media mention of mercury and dental fillings my heart sinks as i
know that somewhere out there is someone who will phone within 
the
next few days and can take ages to placate.  GPs also suffer from 
such
patients, and they are not always easy to refuse.  How do others 
cope
with these, and are there any oyther particular problems?

Barry Sampson

At 13:40 14/07/00 +0100, you wrote:
>
>Most laboratory reports are not results of tests in the usual meaning
>of that word; they are the results of analyses. Only when an
>appropriate
investigation has
>been performed, the power of the investigation is known, and the
>result is interpreted in the light of what was previously known about
>the patient do
they
>carry new information about that patient. Giving one piece of data
>(the
typical
>laboratory report) alone to the patient is therefore likely to be
misleading. (Of
>course current practice for most of us doesn't give information about
>the
power of
>investigations or how to interpret them to the practitioner either.
>The best solution to this may, surprisingly, not be statistical
>calculations but
simply
>hyperlinking support information to the result...)
>
>Ethically there is a strong argument in favour of keeping patients
informed about
>their condition. However, as above, this is about information, not
>about
results
>of assays. Furthermore distressing information should always be given
>in an environment which allows the patient to assimilate the
>information at her own speed and with the opportunity to discuss its
>significance then, and,
often, in
>the future. Laboratories will rarely be the correct places or
organisations to do
>this.
>
>Medical practitioners will often want to control the environment and
timing of the
>delivery of this information, and it can put them in a difficult
>position
if the
>patient is told bits of information in an unpredictable way.
>
>However there is good evidence that patient-held records have
>advantages over traditional models. This is not an argument for
>adding data to that record
without
>it being managed by the appropriate practitioners.
>
>In practice identifying the patient correctly might be even less
>reliable
than the
>way we currently distribute reports to practitioners.
>
>Jonathan
>
>
>Dr Jonathan Kay
>University of Oxford
>
>
>"Dr J. Falconer Smith" wrote:
>
>> for what it is worth I agree strongly with Gordon Challand.
>> I think giving results to patients is fraught with problems and it
>> may well be in the patient's best interest to hear the results from
>> their clinician. (Would the proposers of giving out results do so
>> for HIV positive results? -  OK, what about a PSA of 100
>> micrograms/L (very abnormal for those in the USofA)? and so on....)
>
>
>
Barry Sampson
Principal Biochemist and Honorary Lecturer
Trace Element Laboratory
Clinical Chemistry
Charing Cross Hospital & Imperial College School of Medicine
London W6 8RF
UK

Phone +44-020-8-846-7080
Fax      +44-020-8-846-7007

[log in to unmask]
Trace Element Laboratory now on the Web at:
<http://home.clara.net/sampson1/html/laboratory.htm>
------- End of forwarded message -------

Dr Rick Jones
Director of Chemical Pathology and Immunology
Institute of Pathology
Tel:(44)-113-233-5677
Fax:(44)-113-233-5672
http://www.acb.org.uk
http://www.yichi.org.uk
http://www.leeds.ac.uk/rdinfo //Winner - Best Health Database HC99


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