Final Report > Chapter 23: Respect and Honesty > Partnership: involving patients and parents in decision-making > Improving ways of giving information

Improving ways of giving information

23 We have seen that the provision of adequate information is an essential prerequisite to the development of trust. It underpins the honesty between professional and patient. Thus it is essential that such information be clear, factual, and that it empowers the patient. We recognise that there are undoubtedly examples all around the country of good information being provided for patients, as the creative use of a range of media, such as leaflets, books and interactive videos and the Internet grows. Nevertheless, we heard in Phase Two that much of the current information for patients about treatment is out of date, or of poor quality. Criticism was particularly levelled at information which is excessively optimistic, and that which has a tendency to downplay, or omit mention of, side effects, risks, uncertainties and controversies. We would add that too often the information given to patients seeks to encourage compliance with what is proposed, rather than to engage patients with the choices which are theirs to make, and thereby empower them. Much more creative thought needs to be given to ways of improving the quality and timeliness of information for patients. It is not just a question of the media that are used, although that is important. The quality of the content is also crucial. This is a much neglected area where the new NHS Modernisation Agency could play a role in identifying and disseminating good practice. Angela Coulter and her colleagues made a similar plea to the NHS Executive before `The NHS Plan' appeared. It still is relevant. They argued:

`The goals of the government's patient partnership strategy, which aims to promote shared decision making, will not be met unless patients are provided with good quality information about diseases and treatments. We call on the NHS Executive to:

• `Fund the development and evaluation of high quality patient information materials covering common clinical problems.
• `Commission patient information materials to accompany each of the evidence based guidelines to be commissioned by the National Institute for Clinical Excellence.
• `Establish a system for accrediting patient information materials and websites to help patients and health professionals identify reliable information.
• `Establish a system for disseminating good quality materials to patients, where appropriate making them available in general practitioners' surgeries, hospital departments, community pharmacies, consumer health information services, healthy living centres, public libraries, etc.
• `Ensure that each NHS Trust and primary care group [and now, primary care trust] has a designated senior member of staff responsible for ensuring that patient information meets high quality standards.' [19]

24 One of the recommendations in `The NHS Plan' was that, in future, patients should receive a copy of any letter about their illness or care which was written by one clinician to another. We support this recommendation wholeheartedly. We believe it will do much to empower individual patients. (Of course, patients are already entitled to see their medical notes, although some may not be aware of this.) We add, however, that, to the extent that technical matters may not be written about in a way that can be understood by the patient, the patient should be able to seek help from NHS Direct or from their GP. We add further that this practice must extend to parents of those too young to take decisions for themselves. At some point, of course, the child's right to confidentiality will displace the claim of the parent. This is but a further example of the need to manage these conflicting claims and will need to be carefully addressed.

25 There is one additional, particular practice which we would commend for the future, especially in the case of parents whose children are ill. Patients, when meeting their doctor for an important consultation, to discuss a diagnosis, a course of treatment, or prognosis, should have an option to tape-record those discussions, so that they can listen again later to what was said. Tape recording facilities should be provided by the NHS to enable patients to make a recording. The patient would be able to take the tape home. If necessary a copy of any such tape could be kept with the medical record. We were told repeatedly by parents in the Phase One hearings that they remembered very little of what was said to them, on those particularly significant and hence very stressful occasions when their child's diagnosis or treatment was being discussed. We also heard that when two parents met the clinician, they often remembered different and sometimes conflicting messages. A simple measure such as enabling patients to tape-record a consultation, something already done in a number of places, could bring significant benefits to patients, families and professionals in terms of partnership and mutual understanding.

26 We should also notice here the increasing influence of the Internet. [20] Patients now have access to a great deal of information and data. The public's and patients' desire for more information is not going to go away, nor can it be readily managed or contained by professionals. It is particularly important that professionals should not perceive this development as an implicit attack on their expertise. Rather, they must adopt new strategies based on partnership. They must seek to explain and give meaning to what patients may have come across, and guide patients in their continuing search. [21] At the same time, and separately, efforts to guide the public towards those sources of information which can be properly relied upon and are of good quality should be pursued by professionals and the government. This has started to happen, to a degree, through NHS Direct Online, various hospital websites and the National Electronic Library for Health, but there is much more that could be done to provide patients and professionals alike with access to sources of information which both can trust. [22]

Footnotes

[19] Coulter A, Entwistle V, Gilbert D. `Sharing decisions with patients: is the information good enough?', `BMJ' 1999; 318: 318-222. www.bmj.com

[20] In 1999, there were, according to the `BMJ', at least 100,000 health-related websites. Eysenbach G et al. `Shopping around the internet today and tomorrow: towards the millennium of cybermedicine'. `BMJ' 13 November 1999; 319: 1294. www.bmj.com

[21] See Sheppard S et al. `Helping patients access high quality health information', `BMJ' 18 September 1999; 319: 764-766. www.bmj.com

[22] See further Eysenbach G et al. `Shopping around the internet today and tomorrow: towards the millennium of cybermedicine'. `BMJ' 13 November 1999; 319: 1294. www.bmj.com