Establishing and running health information services
Health information centres (or disease specific information centres, such as cancer) have become more common in recent years. A number of hospitals run information centres covering a wide range of conditions and treatments and sometimes social care and services information. These centres are sometimes linked to PALs and Information Prescription services. Macmillan Cancer Support also has over 170 cancer information centres across the UK, which specifically focus on supporting and informing people with cancer and their families. A small number of health charities also run information centres which focus on a specific condition.
Patients and their families, friends and carers have become more aware of the information available to them and how they can use this information to inform decision making. Information services may also help people to self-manage long term conditions (such as diabetes and asthma).
An information centre can:
- offer specialist guidance to people in their search for the right health information
- help find information in different formats such as information in languages other than English, audio or DVD versions, picture based resources for those with learning difficulties or large print copies
- signpost callers to other health and social services, both local and national, which might support them including national charities such as Diabetes UK, The British Heart Foundation or Macmillan Cancer Support
- give people time to talk about their worries which they may not be able to achieve in a short appointment with a health professional (this is limited emotional support, and not counselling – a listening ear)
An information centre cannot:
- offer medical advice – this is strictly the role of the clinician or other health professional
- obtain access to confidential patient medical files
- carry out the role of qualified health care or social care professionals, for example information service workers can signpost to a dietician and give out information resources about food and diet topics but cannot offer dietary advice directly to patients (unless qualified/trained in this speciality). Information staff must be aware of their limitations and professional boundaries.
- send information to someone who has not requested it personally. People often feel that their friend or relative would benefit from information about a health issue. It is absolutely fine for people to obtain that information and give it to that friend. However, the information service will be unable to send it directly to someone if that person has not asked for it and does not know it has been requested. Imagine if you received a booklet in the post about your health that someone else was discussing, without your knowledge, with a third party. No matter how good the intentions are it probably won’t be well received.
Information Centres are able to answer some queries which patients may otherwise have called upon their doctor, nurse or allied health professional to help them with. It is however important to remember that health information services do not replace medical care. In this way people can talk to someone, usually on a drop-in basis, and rapidly access the information they need without taking up the time of a health professional.
Health information services may have qualified health or social care professionals as part of the team in order to deal with more complex enquiries. Other services are staffed by library professionals or sometimes with volunteers alone (many of whom may have been former patients or carers and have relevant useful experience to offer).
The type of enquiries people may call into a centre to ask about are very varied, but broadly speaking these are some common enquiries:
- information about diseases, medical conditions, preventing illness and healthy lifestyle
- information about treatments, such as surgery, and medicines and their side effects
- details of clinical trials and research
- issues for carers and families who support ill or disabled people
- complementary therapies
- diet and exercise
- emotional and psychological well-being, and spiritual issues
- practical issues of daily living such as driving, equipment, travel, holidays and travel insurance
- financial issues such as benefits, mortgages, insurance and pensions
- coping with children
- self-management of long term health problems
- end of life care
- government policy on health
- issues raised in the media – in drama, film and TV, stories about new treatments, celebrity stories about health problems
- local and national support groups or voluntary sector charities
- local resources such as suppliers of disability equipment, wig fitters and complementary therapists
When planning a new information service, or looking at the stock in an existing service, these are the topics which need to be considered when ordering resources. Having the use of a computer with access to the internet and a printer is essential. If you don’t have the capacity to stock a lot of leaflets in the centre you can then at least download online copies and print them off as and when they are needed.
“Good information is an important part of making sure people stay healthy and get the best care. It supports people to know about care and treatment choices and the quality of services.”
Taken from “The Power of Information: putting all of us in control of the health and care information we need” (Department of Health, May 2012)
- Before setting up a service find out about your local population and community: is it rural or inner city, are there populations of ethnic minority groups, is there a high population of older people, what services already exist? This will help you to formulate a case of need.
- The location of a health information service is crucial. If it is not visible and easily accessible it will not be used. It may be worth trying a few temporary locations first to find out what works best in your area. If it is to be located within an existing building set up a small table to see how people use the service at different locations. Near entrances often works well as people have to pass by that way.
- Ask service users or potential service users what they would like to see in a health information centre and what would encourage them use it: “it’s selling points”
- Promote your service to patients, health and social care professionals and to students of health and social care professions. Let them know what you can do for them. It is very important to address the needs of staff as much as it is to patients as these are the people (or future people) who will send their patients to you. Posters and leaflets are useful to disseminate to organizations such as hospital departments, GP surgeries, Libraries and Community Centres, however nothing works better than word of mouth. Try and visit as many of them as possible to talk to those who might be interested. Service promotion is ongoing and not a one-off event – there are new patients, carers and staff moving into your area all the time that need to know about you.
- Develop a “can do” attitude! If you are asked for something that is quite tricky to find people appreciate the extra effort you can make to find out the health information they need. Maybe students of health and social care should research their own materials but by helping them they remember you and recommend your service to others in the future.