Few doctors have a problem with informed pts. Unfortunately the problem is
that there are some pts who will selectively sift the info they find to
support a diagnosis/treatment they wanted in the first place and ignore the
info against. A classic example is the pt who brings a newspaper article
(written well and in good faith) and says"there this is exactly what I've got"
eg.ME, when the GP is thinking "yes, but the rest of you is depressed". I
recently had a local university arts academic refuse to have her baby
vaccinated until after 1 year stating " I'm an trained researcher, have looked
up all the data, and I conclude that it is safer to delay". She is a believer
in the 'anthropic' view of nature and science. I politely asked her how if she
really had made an objective assessment of the literature, she came to the
direct opposite conclusion of all the vaccination experts who have examined
the same literature. No answer was forthcoming except a letter written to me a
few days later stating that I should have the view that doctors are Gods.
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From: [log in to unmask] on behalf of John D Dalton
Sent: 17 January 1998 13:08
To: [log in to unmask]
Subject: Partnership with patients
How do list members feel about the following article from last week's BMJ?
BMJ No 7125 Volume 316
Editorial Saturday 10 January 1998
Partnership with patients
Patients want more than simply information; they need
involvement too
Being confronted with a patient who has done a literature search, scanned the
internet, made a provisional diagnosis, and knows what he or she wants from
the health service is no longer a hypothetical scenario. People are becoming
better informed about health, and a groundswell of support and government
backing exists for the campaign being waged by consumer lobbies, patient
organisations, and others for more and better information on health and for
greater involvement in decision making.(1)
Much of the information currently available to patients is inaccurate or
misleading and gives little indication of outcome and treatment options. The
need to improve such material and take more account of patients' information
needs was emphasised at a recent meeting, organised by the King's Fund
under its "Promoting patient choice" programme.* It is also the focus of a
new
government funded Centre for Health Information Quality, which will
coordinate and support the development of materials for patients.*
But what constitutes quality? "Patients want honest, unbiased, up to date
information about their illness, its likely outcome, and the risks and
benefits of
different interventions," said Dr Angela Coulter, director of the King's Fund
Centre. "They also want help to identify and secure their treatment
preferences. When uncertainty exists it should be discussed, not omitted or
glossed over, and advice should be explicitly supported by the best available
evidence."(2)
Most people, doctors included, have only a sketchy idea of the information
services available for patients. The National Health Information Service, is
a
good example. Set up in 1992 it remains underused. Calls to freephone 0800
6655 are put through to regional services which provide information about
local health services, local and national self help groups, medical
conditions
and their treatment, hospital waiting times, voluntary organisations, health
information leaflets, etc. Most also have access to the Cochrane database and
the Effective Health Care Bulletins.
People vary about how much they want to know about their medical
condition and when they want to know it. Some cope better with uncertainty
than others. What they want when well may differ from what they want when
they or their dependants are sick and vulnerable. Some may prefer to leave
decisions to the health professionals. There is evidence, however, to suggest
that patients want more information than they get and doctors overestimate
how much they supply.(3) "Assessing people's information needs, identifying
treatment options and the evidence that underpins them, establishing
preferences, and supporting people to make decisions is a discipline in its
own
right. Health professionals need to be taught this skill, which goes well
beyond
the current teaching of communication skills," said Dr Angela Towle, research
fellow at the University of British Columbia.
Doctors working under tight time constraints with little access to good
information for themselves are in a difficult position. They may question the
feasibility and desirability of providing every patient with state of the art
information. They will rightly question the evidence base of this approach.
Does it alleviate rather than provoke anxiety, promote self help or put more
demands on stretched resources, increase effective use of limited services or
increase demand from the articulate minority at the expense of the collective
good? Healthcare purchasers and providers may also question the cost
effectiveness of providing more and better quality information for patients.
Employing hospital patient information managers; producing and disseminating
good quality leaflets; providing CD-ROMs, interactive videos, and touch
screen kiosks in surgeries, outpatient departments, and pharmacies is not
cheap. Giving better information also entails exposing more of the
uncertainties in clinical medicine.
"But this is a good thing. We need more open acknowledgment that the
scientific basis of many medical interventions is poor," said Dr Jack
Wennberg, of the Foundation for Informed Decision Making in the US.
"Patients should know that the wide variations in practice, especially in
operative procedures, are not related to need but to the advocacy and skill
mix of local doctors. When patients are fully informed about the risks of
intervention and their preferences taken into account, operative rates for
prostatectomy, for example, which vary tenfold in the US, fall to the lowest
level and costs fall."
More open and equitable exchange is also likely to increase patient
satisfaction (and hence reduce the risk of litigation) and enhance
compliance.
Patients are also, Dr Wennberg argued, more likely to see the need for, and
agree to participate in the large randomised controlled clinical trials that
are
needed to assess the long term outcome of many clinical interventions.
As the rights of individuals as "healthcare consumers" are strengthened, and
public involvement in debates on priority setting and rationing increase,
health
professionals must move with the tide. Providing people with good quality
information and working with them to to use it to their best advantage is in
everyone's interests.
Tessa Richards Associate editor,
BMJ
References
1 From dependence to partnership: patients redefine their role in health
care. The
Patients Network 1996;1(2):1-7.
2Entwistle V A, Sheldon T A, Sowden A J, Watt I A. Supporting consumer
involvement
in decision making: what constitutes quality in consumer health information?
Int J
Quality in Healthcare 1996;8:425-37.
3Makoul G, Arntson P, Schofield T. Health promotion in primary care:
physician-
patient
communication and decision making about rescription medications. Soc Sci Med
1995;41:1241-4.
*Additional information
Promoting patient choice,
King's Fund,
London W1M 0AN
Tel: 0171 307 2671;
email: [log in to unmask]
Centre for Health Information Quality,
Winchester SO22 5DH
Tel: 01962 863511 ext 200;
email: [log in to unmask];
Website: http://www.centreforhiq.demon.co.uk
Information about evidence based, peer reviewed leaflets may be obtained
from:
Informed Choice,
PO Box 669,
Bristol BS99 5F.
Proposed Cochrane Review Group on Consumers and Communication:
information
from:
Paola Rio,
Public Health Branch,
PO Box 4057,
Melbourne Vic 3001,
Australia
Tel: 61 39637 4211;
email: [log in to unmask]
Mailing list for developers, evaluators, and researchers in digital patient
information:
email: [log in to unmask]
--
John D Dalton
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