Databases > Using Databases

Using IT for Phone Advice: Cancer BACUP

By Debbie Coats, Cancer BACUP

Case study of how Cancer BACUP uses ICT to manage their phone advice service

Each week over six thousand new people are diagnosed with cancer in the UK. When people first learn that they have cancer they experience a range of intense emotions which make it extremely difficult to take in information. There is a bewildering array of possible treatments, and people may experience symptoms from the cancer, or side effects from treatment, which can be very difficult to bear.

Information and emotional support have been shown to improve the quality of life for people with cancer and their families. It can also improve the control of side effects and symptoms, and dramatically reduce fear and anxiety, whilst increasing people's ability to cope with the illness and its effects.

The Cancer Information Service

A team of 15 specialist nurses answers over 45,000 enquiries a year (180 a day) from all over the UK. There are over two hundred types of cancer and the enquiries received can be on any aspect. They include requests for information about a particular type of cancer; cancer treatments and how to cope with side effects; how to get financial help or travel insurance; looking after someone with cancer who is dying; and how to talk to children about cancer.

Each enquiry to the information service is answered by a qualified and experienced cancer nurse who provides information in understandable language and also gives appropriate emotional support. They can answer many enquiries from their own knowledge and experience, but due to the complexity of the subject of cancer, there is no way they could know everything they are likely to be asked. So, in addition to their experience and expertise the nurses have immediate and easy access to a resource centre.

There are eight work stations in the phone room and on each desk is a Novell networked 486 computer with a relational text retrieval database called STATUS/IQ, which contains details of all the information held in the resource centre.

The database is divided into sections (chapters) which hold different categories of information. The nurses can search one chapter or the whole database. The sections correspond to the different collections of information held in the resources:

• Details of over seven hundred national cancer support and self help groups
• Details of more than two thousand national and international cancer related organisations
• Catalogue of more than 1,100 cancer textbooks and reference books
• Researched reports on controversial issues or rare cancers (written by the nurses)
• Catalogue of more than 16,000 research papers, clinical trial protocols, and patient information sheets – including drug information, news reports and press releases
• Details of CancerBACUP's two hundred Specialist Medical Advisors

While talking to a caller the nurses can look up cancer support and self help organisations in the caller’s area, and print off a list. They can also create booklists or reference lists. The catalogues on the database enable them to quickly locate the relevant book or articles for the subject they are researching. Using keywords (from a specially developed thesaurus) they can look up the latest information on, for example, a new treatment that a caller heard about on the news, drugs to control particular symptoms, or the services offered by a cancer support group in a particular area.

Information on the database and in the resource area is sorted, checked and catalogued by two library and information officers. The resource centre takes in thirty-two medical and cancer journals, and keeps track of all new books produced on cancer and related subjects. When new cancer support groups are formed, or organisations change their location, the library and information officers are informed. Much of the updating of the information on organisations will now be able to be performed by email, which will reduce postal costs.

Staff support

The nurses attend weekly "resource update meetings" to feed back information from the conferences and study days that they attend, and review the journals and other literature that is received. Fortnightly education sessions are held, during which consultants and cancer specialists give an overview of the management of a particular type of cancer, or a particular aspect such as treatment developments or new surgical techniques.

Weekly clinical supervision is facilitated by a group counsellor, to maintain and develop the nurses' communication skills and self-awareness, and to identify any training needs. It is also an important form of support for the nurses, as many of the enquiries they receive are from people who are very distressed or anxious.

Six half-day training sessions are held each year and they cover issues such as loss and bereavement, talking to children, and body image and sexuality. The nurses attend at least four of these per year.

IT issues

Most nurses do not use computers to any great degree and so an essential feature of the software had to be an easy to use interface, and a simple method of searching. Training in using the software is provided by the library and information officers and each nurse usually picks up how to use the system within three hours.

A problem with IT at CancerBACUP, probably true for most charities, is that not all the hardware and software in the building is compatible. Although the importance of good IT Systems is recognised, the software and hardware are not completely standardised. CancerBACUP has bought most of the equipment but there are also old computers and printers which have been donated over the years. Currently STATUS is in a DOS format. Other systems in the building, including the CD-ROM and word processing, use Windows, which means that the resource staff and nurses have to be familiar with two different ways of doing things. The library and information staff are currently putting together a plan to look at the IT needs of CancerBACUP to enable a system to be put in place which gives consistency, and uses Windows for all applications.These developments are challenging, because any IT development is expensive, but also exciting – in that it will help CancerBACUP to fulfil its aim of providing information and support to everyone in the UK, affected by cancer. Any system needs to be accessed by staff in the regional centres which CancerBACUP will be setting up in hospitals within the next few years.