Feature

Information as therapy

There are multiple benefits to providing health service users with the information they need. Jane Sweetland reports on the experience of the Health Facts centre in Bristol

Providing relevant and accessible information is one of the most important routes to empowering patients. Information is essential if users are to make well-informed decisions about their illness and its treatment and if they are to actively take care of themselves as well as passively ‘follow the doctor’s orders’. In addition, providing written information helps people to remember what the doctor has told them,¹ and there is also evidence to suggest that well-informed patients worry less about their condition and are more able to cope with it.² The importance of information for users is recognised by the Patient’s Charter, which states that information should be available on common diseases, conditions and treatments, and on maintaining and improving health.³

Health Facts is a drop-in information centre at Frenchay Hospital in Bristol, providing information about illnesses, health and self-help groups in response to enquiries made by letter, phone or visit. Since most enquiries to the centre are one-off and we receive little feedback, we carried out a survey of 100 consecutive users to help us improve the service we provide.

The results of the survey were enlightening. We found that almost a half of enquirers were health professionals, in particular nurses, health visitors and GPs, and that women outnumbered men by six to one. About two-thirds of enquirers contacted us by telephone and one third in person, with the occasional person writing in, and virtually everyone said they found it easy to contact the centre, having heard about it through their GP’s surgery, pharmacist, CHC or hospital clinic. Despite our extensive written publicity and advertising through the media, only four per cent of enquirers had heard about the service from our promotional material, suggesting that word-of-mouth is by far the most effective way of publicising a service like this.

Two-thirds of the enquiries were received were about a specific illness or condition, and a further one-fifth were from people wanting to make contact with a self-help group. The remainder covered a range of topics, such as health promotion and social issues including child abuse.

How do enquirers benefit from the Health Facts centre? At the simplest level, almost everyone told us that the information we provide increased their knowledge of their illness or problem. But together with new understanding came an enhanced ability to cope with — and perhaps take control of — their situation.

One respondent wrote: ‘I was unfortunately not told the extent of my illness and through contacting you am better prepared for the future.’ Another said: ‘I am now able to make informed decisions.’ A third felt ‘a sense of relief knowing more about my condition which is much more detailed than can be obtained from a doctor’. And more than half of those we surveyed felt that their health itself had improved simply as a result of this ‘information therapy’. ‘I feel better in myself’, wrote one.

The reduction in anxiety which came from knowledge was a common theme. ‘I feel less anxious and feel I can cope a bit better with my situation’ was a feeling often expressed. Health professionals often feel that patients should be protected from too much information which might worry them, but we found very few people felt worse as a result of knowing more. Overall, 44 per cent said they felt less stressed as a result of the information provided, and 36 per cent unchanged. Only eight per cent felt more stressed.

Almost a half of enquirers felt that information had better equipped them to look after themselves and prevent their condition from worsening. ‘I am more aware of the diet side of the illness and what treatment is available’ was a typical comment. Three-quarters of enquirers felt better able to take their prescribed medication correctly and some people took immediate practical measures — ‘stopped smoking’; ‘changed diet’; ‘relaxing more and taking more exercise’; ‘taken more precautions against dust mites’ — as a result of reading the information.

Of considerable importance to the health service is the fact that 25 per cent of respondents felt they had made fewer visits to their GP after using the information service. But a further 25 per cent had visited moreoften — for various reasons, such as for more information, for a diagnosis or to ask about treatment mentioned in the information we had provided.

Interestingly, for many people the centre had a role not simply as a source of information, but also as ‘someone to listen’ when needed. ‘I would like to thank the person I spoke to for being on the end of the phone when I was going through a bad time’ wrote one user. More than one in four of those we surveyed were looking, not simply for information, but for someone talk to about a particular illness or problem.

The most valuable parts of the survey for our own purposes in planning the development of the service were the comments on best and worst aspects of the centre. The quality most appreciated by users was the accessibility of information, both in practical terms — ‘friendly, helpful staff’, ‘efficient service’ — and in terms of the information itself — ‘easy to understand information’, ‘up to date’.

Despite respondents giving 22 different ways of finding out about the service, many still said the centre needed more publicity and that they had found out about it only by word of mouth.

The results of this survey are very similar to an earlier survey we conducted in 1989. The main difference now is that people are saying they welcome the opportunity to talk to someone about their illness, underlining the importance of’a service which can listen as well as talk.

The survey results suggest that health information can have an effect on the well-being and quality of life of health service users and help people to cope better with the conditions they face. Providing information can also inspire people to take positive action to prevent their illness getting any worse and offers them the opportunity to make real choices about the risks and benefits of treatment.

Information can not only aid recovery but may also save money. Information can improve medication compliance, reduce anxiety and stress levels and maybe even increase hospital throughput and consultation rates, when patients have a greater understanding of their illness.

A health information centre is a relatively cheap way to meet health information needs (£25,000 per year including salaries), providing a central point for people to obtain information in a relaxed environment, at their own pace and in language they can understand.

In addition, enquiries to the centre give some indication of the unmet health needs of the population and reveal gaps in provision where little or no information or services are currently available. The information which the centre generates, rather than provides, is potentially of great importance to both health service commissioners and researchers, and these results have been passed on to both. We will repeat the survey in future years to see how peoples’ views change as the information service develops further.

I would like to thank Ann Elford for practical assistance and invaluable advice.