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Draft Guide to the Production and Provision of Information about Health and Healthcare Interventions
PART 2
Section 3 - Producing good quality patient information materials
Before you commit yourself
It takes a lot of resources, skills and time to develop good quality information materials so you should think carefully before you commit yourself to producing a new information package.
Good information already exists on many health topics. If you are planning to develop a new package your focus should be on: Health topics that are not already covered by existing information; or Health topics for which only poor quality information exists; or The needs of people who are not well served by the available range of materials.
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Reading through the rest of this guide should give you a feel for work that is involved.
Initial thoughts
The following questions should help you consider what you are trying to achieve and whether or how you should proceed.
What are you thinking of producing?
Who is the information for?
What do you want it to achieve?
What information will be included?
How will people access, understand and use the information?
Do people require the kind of material you envisage?
Does a suitable package already exist?
Do you have the necessary skills and resources?
What are you thinking of producing?
The first few questions here are all inter-related. Examples of the stage you might want to reach in your 'initial' thinking follow:
Example Initial thoughts on a leaflet about anti-epileptic medication We propose to develop a leaflet for people with well-controlled epilepsy about the option of withdrawal from anti-epileptic medication. We want the leaflet to explain that coming off medication might be an option for people with well-controlled epilepsy; summarise the research evidence about the effects of such withdrawal; outline the potential advantages and disadvantages of continuing or discontinuing anti-epileptic medication; identify issues that people might want to consider before making a decision; and support discussions between healthcare professionals and people with well-controlled epilepsy about the option of withdrawal. Example Initial thoughts on a leaflet about barium swallow investigations We propose to develop a leaflet for people who are scheduled to attend an outpatient clinic for a barium swallow investigation. The leaflet could be given to people by the doctors who recommend the investigation and/or it could be sent out from the clinic along with the letters that offer people their appointment dates. The leaflet is unlikely to be able to tell everyone why the examination has been recommended in their particular case, but we want it to outline the range of reasons why barium swallows are done and the types of problems that they may detect or rule out. We want the leaflet to tell people how to prepare for the barium swallow so that when they attend the clinic they are adequately fasted. We want it to explain the procedure in an honest but reassuring manner so that they know what to expect and are not unduly anxious. It should prepare people for the discomfort they might experience and explain the risks that are associated with the procedure along with the benefits. The leaflet should also explain when, how and from whom people should expect to find out the results of the examination. |
You should also consider the media in which your package might be produced and the routes by which people will access it.
People might obtain health information materials from: Healthcare professionals directly involved in people's care (for example dentists, doctors, midwives, nurses, therapists) Healthcare venues (for example, clinic waiting rooms, patients' libraries, hospital health information points) Health information services (for example, NHS 24, Cancer BACUP) Self-help groups and voluntary organisations Community pharmacies, health food stores, supermarkets, high street health information points, public libraries, community centres The Internet
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The appropriateness of these different outlets depends on the aims, intended audience and content of your material. For example, information about self-treatment for minor illnesses might be made available via pharmacies, primary care clinic waiting rooms and public libraries while that on post-operative care and recovery is better given to people before they go into hospital or during their stay by the healthcare professionals who care for them.
Factors to consider when deciding which media to use include: Its potential to convey particular types of information. Video for example, is very useful for showing interviews with people who have experienced a particular condition or intervention, presenting role models of patients asking questions in consultations, or demonstrating self-care procedures such as use of an injection pen. The abilities and resources that people need to be able to use the media.
Audiotapes, videotapes and CD-ROMs can only be used by people who have access to the necessary equipment, while some media will be unsuitable for particular audiences. You need to think carefully about the people your choice of media might exclude, and consider how else they can access the information. The extent to which the media allows people to revisit and share information. It is important to consider when people might want to use or share information, and to think how well different media can meet their requirements. For example, leaflets can be read almost anywhere, people can quickly find a section they want to read again, and can take them home to share with family members. In contrast, touch screen information points can only be properly used in the places where they are sited. The cost of producing, reproducing, distributing and updating information packages in different media. It is easier to alter information in some media than others. Think how often your information will need updating before selecting a media format.
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It is useful to have some idea about how people will access the information before you finalise your content. Think about the situations people will be in when they receive your material as you decide what information to present and how.
Do people require the kind of material you envisage?
Before you invest effort in developing an information package you should establish that your intended audience really require information on the topic. You might already have evidence of this if, for example, you know patients have been asking healthcare professionals or information services for it. Newsletters produced by patient groups or research papers could tell you that patients, their families or the public think the information is important. You might know that people welcome materials that provide similar types of information about other health conditions or treatments. Otherwise, you can check with healthcare professionals, patient representatives and members of your intended audience.
When you ask members of your intended audience for their thoughts, remember that people may not be able to identify all the kinds of information they might want. In addition to asking them about the types of information they want, you could show them examples of what might be included in an information package and ask how useful they think this material would be.
Does a suitable package already exist?
You could check the following sources to identify any existing information materials on your chosen topic:
Your own organisation (ask the patient information officer, if you have one)
NHS Health Scotland (maintains a database of patient information leaflets)
NHS 24 (maintains a stock of information materials that can be given to callers if appropriate)
Local Health Councils
The Scottish Consumer Council 'Health Rights Information Scotland' project is producing templates for information about patients' rights
Citizens Advice Bureaux
Voluntary sector organisations that focus on your topic of interest and/or serve the people who comprise your intended audience
Royal Colleges or other professional bodies that cover your topic of interest
The Internet
If you do find materials on the topic you are interested in, you will need to assess their quality and suitability before deciding whether to develop new materials or adapt existing ones. (See 'What makes good quality health information?', page 5.)
Do you have the necessary skills and resources?
A range of skills are needed to produce good quality information materials, so it should usually be a team effort. Check that you can access all the expertise and resources you will need
before you commit yourself to producing an information package.
Some of the things you will need to be able to do and budget for include: Clarifying the information needs, current knowledge and beliefs of the intended audience Familiarising yourself with the context(s) in which the information will be used Locating appropriate information sources, including sources of research-based information about the effects of healthcare interventions Critically appraising the available information and extracting relevant details Communicating the relevant information clearly using appropriate languages and images Working effectively with people such as members of your intended audience, healthcare professionals and media production specialists.
When thinking about an information production team, you might consider: Whose perspectives, knowledge and skills will ensure you develop a high quality package? Whose involvement might affect the credibility and future use of the package? Whose expertise within the multi-disciplinary teams is required?
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Not every skill is needed among the core team, because you can 'buy in' certain types of advice on a consultancy basis.
A core team that includes the following makes a strong starting point:
| Relevant information searching, research and critical appraisal skills |
| Appropriate information handling, communication and basic media production skills |
| Relevant clinical knowledge and experience |
| Personal experience of the health condition and/or healthcare interventions. |
Choosing to proceed
If you decide to develop an information package from scratch or revise an existing one, we suggest that you continue to read through this guide before you start, then refer back to the relevant sections as you proceed.
An overview of the production process
The following chart outlines our approach to the process
and assumes you have already checked that nothing similar to what you propose exists.
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