Mark Duman, MRPharmS; Amanda Clark, MA, RN.
Mark-Freelance Health Communications Consultant; Amanda-Professional Nurse Editorial Advisory Board Member.The first paper in this series (Professional Nurse September 2003) discussed government policy initiatives that influence the need for the production of patient information. It established that patients and their carers need to be informed to enable them to participate effectively in the new patient-centred NHS. Knowing that we need to do something for our patients makes it tempting to jump straight in and start developing patient information. However, before putting pen to paper, it is vital to consider several issues. This paper looks at these and offers advice on action to address them.
The first paper in this series (Professional Nurse September 2003) discussed government policy initiatives that influence the need for the production of patient information. It established that patients and their carers need to be informed to enable them to participate effectively in the new patient-centred NHS. Knowing that we need to do something for our patients makes it tempting to jump straight in and start developing patient information. However, before putting pen to paper, it is vital to consider several issues. This paper looks at these and offers advice on action to address them.
Some trusts have developed or are developing an information policy, and the production of specific patient information should fit into this policy. Organisations should be promoting consistency across their information services, taking into account the moves to standardise information nationally, such as through the NHS Identity Guidelines (DoH, 2003). Information policies should address some of the questions listed in Box 1.
Your trust may have guidelines on producing patient information and these should be adhered to. If not, a patient information officer or someone in the quality assurance department should ideally be responsible for developing such guidelines. These should be audited and updated regularly and can be linked to quality standards schemes. The Patient Information Forum (Box 2) can provide examples.
An important consideration for those wishing to produce patient information is that they may be liable in law for the consequences of the information they produce. If you are involved in producing information you need to have clear guidance on legal liability. The degree to which you or your organisation are liable will depend on the stated aims of the information produced: for example, will the audience for whom the information is intended rely partly or solely on it to make treatment decisions?
Methods that can be used to protect against negligence claims include quoting the source of good practice clinical guidelines, including disclaimers (Box 3) and checking your organisation's insurance policy.
Copyright and confidentiality
Issues relating to copyright need to be discussed and agreed before information is produced. This becomes especially important if several agencies are involved in the process and if external funding has been obtained for the project. Always contact publishers to get permission if you wish to use their material.
If you wish to use patient data you must have a clear understanding of the rules for using it and must accept responsibility for complying with them. The Data Protection Act 1998 and Freedom of Information Act 2000 address this (Box 2).
Planning the information package
After looking into, and addressing, the issues raised in the section above you are ready to plan your information package in greater detail. It is vital to be clear about the reasons for producing information and you should have a clear aim from the outset. You will need to answer the questions listed in Box 4.
It can be useful to contact organisations such as the Patient Advice and Liaison Service (PALS) and NHS Direct, who can help you identify gaps in current information provision. It can also be useful to contact local organisations such as patient groups.
Discussing your project and its aims with interested parties and organisations will help you to establish an outline proposal for the content of your information package. You should make a list of the aspects of treatment and care that will be of interest to your target audience, taking into account issues such as treatment options, gaps and uncertainties in current scientific evidence, quality-of-life issues and inpatient and outpatient services.
The next stage in the planning process is to determine a timescale for developing and producing your information package. Base your schedule on realistic assessments of the topic to be covered, the number of people participating in the project and the money you have to spend on it. It is helpful to identify milestones to help measure your progress, such as:
- The date for the first draft to be finalised
- The date for the second draft to be discussed with health-care professionals and patients
- The delivery date for produced materials
- The date for review.
Producing patient information is time-consuming and often requires research skills, writing skills, media expertise and clinical expertise in your chosen topic. By choosing your team wisely you can ensure that you have the skills you need within the group to achieve your aims. You could set up a steering group to provide advice and guidance for the project that could include academics, a PALS representative and members of appropriate patient groups.
A common mistake is to put off discussing how you will disseminate the finished product. Outlining a publicity and distribution strategy now will save a lot of time later. Costs for distribution and publicity need to be included in the overall project budget. Now is also a good time to discuss how you plan to support the information package once it has been distributed and how you will ensure that the information is correctly displayed to the target patients. Will training in the use of the package be required?
Finally, it is important to consider the knock-on effects of your project. Will informing your patients have an impact on the services that are provided? For example, will patients - as a result of being informed - expect a choice of treatments where previously only one was available? It is worth taking the time now to discuss these possibilities with senior members of your organisation and, if appropriate, your health authority.
- Mark Duman is author of Producing Patient Information: How to research, develop and produce effective information resources. Available from the King's Fund at www.kingsfund.org.uk/publications
- See comment from the Chief Nursing Officer for England, Sarah Mullally, on page 64/65.
- The next paper in this series will look at how to collect the evidence you will need to ensure the quality of the information package, how users can be involved in the process and issues relating to conflicts of interest.
The series topics are:
- Why provide information?
- Planning an information package
- Collecting evidence and ensuring quality
- Content and presentation
- Disseminating, evaluating and updating information.
Department of Health. (2003)NHS Identity Guidelines. Available at: www.doh.gov.uk/nhsidentity/
Duman, M. (2003)Producing Patient Information. London: King's Fund.