E-drug: Quality of Patient Information
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I was informed that it would be good if I were to resend my previous
e.mail on recent research at the King's Fund as the attachment was
probably undecipherable for many, so here it is.
Best wishes
David Gilbert
PATIENTS DENIED ACCESS TO RELIABLE INFORMATION SAYS KING�S FUND
Embargo: 0001hrs, Wednesday 30 September, 1998
�Patients are being denied access to reliable information about
treatment options,� said Angela Coulter, director of policy and
development at the King�s Fund. �Health professionals either don�t know
the answers to questions, withhold the information or simply fail to
present the whole picture about benefits and risks.
�Despite endless surveys demonstrating that patients want good,
clear information, it is just not forthcoming. It is highly likely that
good information would save the health service money in the long run
since it would help patients to look after themselves in terms of
prevention and self treatment.�
Informing Patients: An assessment of the quality of patient
information materials, published today by the King�s Fund, demonstrates
that good quality information can improve the effectiveness of patient
care. Without it, patients are unable to make informed choices about
treatments and are in effect excluded from the decision-making process.
The report details a study in which 62 patients and 28
clinical experts reviewed a wide range of leaflets, videos and
audiotapes in current use. The information they contained was often
out-of-date and inaccurate and sometimes seriously misleading. It did
not include full details of treatment options, information about
outcomes and treatment effectiveness was often omitted or was
unreliable, and patients� questions were left unanswered.
more/...
The patients involved in the study felt that many of the
leaflets were patronising and failed to recognise their right to be
actively involved in decisions about their care.
The report recommends that above all, information should start
by answering the questions and concerns raised by patients. The language
used should be simple without being patronising. It should be honest
about benefits and risks of treatment.
So far, the NHS Executive has failed to take the initiative on
patient information. Informing Patients recommends that they should fund
development and evaluation of materials about common clinical
conditions. These could be used alongside the clinical guidelines to be
commissioned by the National Institute for Clinical Excellence. There
should also be a system for accrediting written and computerised
materials.
Carole Pedder, a patient participating in one of the focus
groups for the research, said: �When they measured my cholesterol
levels, I tried to find out what the numbers meant, what the safe levels
were and the role of triglycerides. I also asked whether the tamoxifen I
am taking for breast cancer would have an effect on my cholesterol and
on my heart.
�I was completely brushed aside; they ignored the knowledge I
had acquired from my own research and was told not to read too much!
They also said noone else had complained about lack of information. I�m
still none the wiser about the facts and my own condition.�
The King�s Fund urges the Government, NHS Executive and health
authorities to support good quality information to enable patients to
participate in decisions about their treatment and to improve the
effectiveness of clinical care.
-ends-
Note to Editors
� Informing Patients: an assessment of the quality of patient
information materials, by Angela Coulter, Vikki Entwistle and David
Gilbert, published by the King�s Fund, is available from the King�s Fund
bookshop on 0171 307 2591. Price: �16.95
� Journalist wishing to interview patients from the focus groups should
contact Alison Forbes in the King�s Fund press office on 0171 307 2581.
� Materials were studied about the following conditions: back pain,
cataract, depression, glue ear, high cholesterol, hip replacement,
infertility, menorrhagia, prostate, stroke.
--
David Gilbert
Promoting Action on Clinical Effectiveness (PACE)
King's Fund
11 - 13 Cavendish Square
London, W1M OAN.
Tel: 0171 307 2661
Fax: 0171 307 2810
--
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