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W3C-validated transitional XHTML 2.6 First steps: What do your users want?
Organisations need to understand the information needs of their patients and carers. Only then will they see how these needs are being met currently and identify how best to introduce IPs locally to address these needs.
Users needs might include:
- an overview of treatment options in plain English
- information about their particular long term condition
- where they can get further information
- local support networks
- or transport options for getting to local services and where.
The key is to consult your stakeholders and work with them to get the right balance between their needs and what professionals in your organisation can deliver. Not involving users could lead to all sorts of difficulties later on: obviously, the risk that IPs will not be appropriate, but also the possibility that your project will lose its motivation and impetus for change. Having stakeholder events that involve users, carers, professionals and voluntary sector partners right from the beginning helps the project team to see what will enable IP and where potential barriers may be.
It is important, too, to be clear about what area of information your prescriptions are going to cover, rather than try to provide absolutely everything. For example, your organisation might want to focus on a particular service or specialty to start with. Of the cancer organisations involved in the pilot, most chose a small number of cancer types, such as lung or head and neck, rather than cover every cancer condition.
Pilot sites used a number of strategies for engaging users and carers and their own staff. In some cases, this involved 'piggy-backing' on user groups that were already in existence, or consultation events set up for other purposes. Others set up their own interviews, group discussions, surveys, focus groups, email exchanges and ad hoc conversations.
Some examples
Yorkshire and Humberside: Identifying potential gains for users
RNIB convened a number of focus groups to discuss information needs and preferred provision options. One group was with the Association for Blind Asians, another was a general service user group, and the third was a group of clinical and social care professionals. These groups looked at specific issues concerning eye care and eyesight disorders and also tried to 'thrash out the tension between specialist and generic, tying it up with access'. The project team were keen to press these groups to identify not only the information needs but also the potential clinical gains from introducing IPs. The team wanted to ensure that these gains were maximised through the IP processes. Insights from the consultation events revealed that while information on both specific conditions and wider support issues was already available, it was not being delivered in a systematic way. It was agreed that the objective of the project should be to provide personalised, accessible information, ensuring that all service users were being signposted to the right sources of support, all of the time.
Mid Trent Cancer Network: 'Don't forget the carers'
Mid
Trent Cancer Network held a one-day workshop to look into the idea of
an 'information prescription for carers'. This
workshop, which brought together patients, carers and professionals,
explored:
- If an IP for carers was a good idea
- What it might look like and contain
- How it might work in practice.
You can read the report that Mid Trent wrote about involving carers. As well as summarising the day, it raises important messages for the future.
Isle of Wight: Identifying the focus of the project
The Isle of Wight pilot held a number of consultations and decided to focus on older people's needs. One of the key issues that older people and carers raised was the time they spent trying to access specific information about the services and community support available to them. They felt that a 'one-stop-shop' approach would help reduce stress and anxiety, while consistently high quality information would help to foster improved health and emotional well-being for older people with mental health problems and dementia.
The project team has gone on to develop an on-line resource (which includes a facility for self-prescribing an IP) within the Isle of Wight Council website.
On the next page: What can staff do?
