4.4 The process: Developing directories

IP directories are categorised databases or lists of resources which contain the information that is provided to the user or carer in an information prescription. They can take many forms from a simple paper list or indexed folder through to local or national search engines, with indexes and links to the content of accredited sites.

Almost anyone involved with information prescribing may have the need to consult a directory of sources on health and/or social care and advice. This includes health and social care professionals, information specialists, voluntary sector professionals, local authorities, advice and support agencies, and individual service users and carers. These different groups may need different methods or 'interfaces' for accessing a directory. They are also likely to search a directory by using different search terms and index entries, appropriate to their area of work.

In the process of information prescribing, information found through the directory will be tailored to meet individual needs. Directories therefore need to be structured so that they facilitate the prescribing and dispensing process. Developing a good directory can be a complex task, often best approached by building up the resource slowly. The scale and type of directory will partly be determined by the users and carers for whom the information is intended, the planned uses, and the medium through which it is going to be accessed (website, database, list, etc)

Among the pilot sites, some used the directory to manage significant amounts of systematically-collated information, others to house in one place resources that the practitioners involved were already using. Most sites started with relatively modest, locally produced lists that included links to national sites. The main exceptions were those who were able to use existing directories, either those of voluntary agencies that were their project partners, or other local directories (with national links) that were already available to service users and the general public.

"Whenever there is a significant development … I would hope that they would be able to update and reissue an IP based on all the new information they receive." — service user

Bear in mind that – as the pilot sites showed – having a good directory does not guarantee the delivery of a personalised IP, and a personalised IP can be produced without necessarily having a good directory. Some pilot sites found their practitioners could provide highly personalised IPs without having immediate access (at the point of prescribing) to a directory. Bear in mind, too, of the risk of interrupting the personal dynamics of a consultation or advice session when a practitioner keeps turning to a directory to gather more information.

Some sites, such as Oxfordshire, have decided to develop a directory, in their case in the form of a website, which can only be accessed by professionals. Others, such as the Isle of Wight, have deliberately designed a directory, again as a website, for use by members of the public. Sites adopting this approach tend to concentrate on local services and sources of support, making their websites complementary to national sites such as NHS Direct Health Encyclopaedia (or the NHS Direct Self Help Guide).

What kind of content should be in directories?

All the pilot sites, and their practitioners, and the users and carers they consulted, were clear from the beginning that information directories should cover a wide range of health, social and quality-of-life needs. The basic aim of providing an IP is to support the self-management of specific conditions and promote people's quality of life more widely, so IPs need to be 'holistic'. This view of IPs (and the directories behind them) is supported by research by individual pilots as well as wider national research. The Picker Institute^[1], for instance, found that the most common types of information that users wanted to find were:

• details of voluntary sector support groups
• support for the family or carer(s)
• condition-specific services
• the financial benefits available, and how to claim them
• how to comment on or complain about services.

Most important of all, users wanted their IPs to include medical information about initial diagnosis, treatment and treatment choices.

A survey of the pilot sites revealed that the most common kinds of information they gave to people (mentioned by at least half of the survey respondents) were: • contact details for support groups (64%) • phone/help-line (59%) • links to other websites (51%) •  contact details for charities (48%) • side effects (45%) •  more detailed information on how the condition progresses (45%) •  contact details for information centres (45%) •  benefits available (43%) • Benefits Agency contact details (40%) •   contact details for social services/home help/home care (40%).

[In focus groups we held with users] people expressed how they struggled with daily living such as shopping and transport. Getting information on this was important.' - Leeds RNIB pilot

Different information for different needs

For IPs to work, you need information in your directories that can be 'packaged' to suit individual user and carer needs. 

In order to meet the needs of your target group, you may need to:

• cover a large number of topics – perhaps because you cannot predict what will be needed (this may apply to broader health and social care models)
• or build up a bank of knowledge on some key themes (applicable to specific services, like cancer).

Using existing information systems

Already existing information systems are very likely to assist you when you start putting together your directory. Use national and local charities, libraries, council websites, research organisations etc. for advice and inspiration. Many local voluntary sector umbrella organisations – and statutory organisations such as children's trusts – have well developed local directories which could be integrated with IP directories.

Deciding how much information is enough

Professionals involved in the pilot sites held a range of views about how much information should be made available to users. Some professionals raised concerns that IPs could lead to users getting 'too much' information, but most agreed that it was best to provide as broad a range of information as possible, and leave it to users to decide how much they want to use.

 

On the next page: quality assurance and directories