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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