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Draft Guide to the Production and Provision of Information about Health and Healthcare Interventions
Section 5 - Finding the different types of information you need
Your project team may have much expertise on your topic of interest, but you are still likely to need a variety of information sources while developing your materials. A few of these are highlighted here.
References and contact details are provided in Section 9.
Research evidence about people's experiences and views of health conditions and healthcare interventions
Social and psychological studies of people's experiences and views of health conditions and healthcare interventions can help you get a feel for the kinds of issues that may be important to your intended audience.
However, you need to look carefully at the relevance of the research for your particular audience and for the contexts in which your materials will be used.
When considering research evidence about people's experiences and views, you might ask: How similar are the people who were studied to your intended audience? Are the healthcare interventions experienced by the people who were studied similar to those covered by your information? Is the context in which the research was carried out similar to that in which your information package will be used? How were people's views elicited and how might this have affected their responses?
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The Database of Individual Patient Experiences (DIPEx) is a particularly useful multimedia source of information about people's experiences of health conditions and treatments, although it currently only covers a limited range of topics. Its producers use rigorous interview techniques and are careful to include people with a range of experiences. DIPEx may be a useful source of information as you develop your information materials and one you may want to refer people to for further information.
Research evidence about health conditions and healthcare interventions
Epidemiological studies can provide information about what causes particular health conditions and how many people with certain characteristics have those conditions.
Systematic reviews of research evidence are usually very good starting points for information about the effects of healthcare interventions. These reviews aim to provide clear and unbiased summaries of the best research evidence that is available to answer specific questions about the outcomes of particular interventions. They usually provide more robust information than single research studies. However, you still need to consider the quality of the evidence they provide and the extent to which the evidence applies to your particular audience.
Section 9 includes a list of the main sources of systematic reviews, plus journals that publish critical appraisals of good quality reviews and randomised controlled trials.
Relevant guidelines, standards and policies
You need to be aware of the recommended norms for the management of the health conditions and the use of the healthcare interventions that you are interested in. If, for example, a policy decision has been taken making access to a particular intervention available only to people who meet specific criteria, you will need to consider how to address this.
If you are developing information materials for use in NHSScotland, you should check whether either of the following organisations have addressed the topics:
Scottish Intercollegiate Guidelines Network (SIGN) (issues clinical practice guidelines)
NHS Quality Improvement Scotland (issues advice about the use of particular health technologies, best practice statements, and sets and monitors standards of care for people with particular health conditions).
Sometimes it may be appropriate to refer to these guidelines, standards and policies explicitly in your information. At other times you will need to include them as you present related information.
Information about patterns of practice
Audits can provide you with information about patterns of healthcare practice and the extent to which standards of good practice are met.
Within Scotland, the Information and Statistics Division can give you up-to-date information about various aspects of health service activity - for example the numbers of particular types of operation performed per year or types of drug prescribed.
Health coverage in the popular media
Media coverage of the subjects that are to be the focus of your materials can help you identify any complementary and/or conflicting messages about the topics of interest that have been aired in the public domain.
A quick check of the most accessible newspaper databases or press-cutting services is likely to be particularly useful if the material is controversial or topical. Searches that identify few relevant items can still be useful as they might indicate that public awareness of the topic is limited.
Autobiographical accounts of illness and healthcare experiences are often available in book form, in magazine articles or on the World Wide Web. While these may be useful, you should be aware that the experiences and views reported might be highly 'atypical' and thus potentially misleading if they are not set in the context of the more usual range of views.
Voluntary organisations
These can be very useful to information producers. Their officers, meetings and publications usually provide very good insights into the issues that are important to people with a particular health condition, and they may be a useful source of personal accounts of living with a condition. However, they may represent only a sub-sample of an overall group of relevant people.
NHS 24, NHS Health Scotland and Voluntary Health Scotland can help you to identify national and local voluntary organisations, and groups with interests in particular conditions or issues.
Members of your intended audience
In addition to the patient representatives on your project team, well planned discussions with individuals or groups who would be among your intended audience can provide you with useful information (and confirmation or otherwise of your previous thoughts) about, for example:
the range of experiences people may have of a health condition, intervention or health service
the knowledge, beliefs and attitudes people hold
the types of things people are concerned about
the types of information people would like
the kinds of responses people might have to the information you are planning to present.
Discussions with members of your intended audience could take place at various stages during the development of your materials and might take different forms. Think carefully about how you will identify and approach people, how you organise your discussions and phrase your questions.
Identifying and approaching people
Data protection legislation and guidelines about confidentiality restrict the methods you can use to identify and contact people with a particular health condition, who have received a particular intervention or used a specific service. The Confidentiality and Security Advisory Group for Scotland (CSAGS) has issued guidance about this. (
See Section 9 for contact details.)
You might consider advertising for volunteers or asking relevant healthcare professionals to identify people who may be willing to help. Voluntary organisations might also be willing to approach relevant people from among their members.
Depending on the nature of your project, and the methods you plan to use to involve people, you might need to obtain approval from an appropriate ethics committee before you proceed.
Discussion techniques
Discussions with members of the intended audience may be on an individual basis or in a group, and could be more or less formal, structured and detailed. A variety of techniques are described in the Building Strong Foundations toolkit that offers practical guidance on various approaches to involving people in the NHS.
You need to imagine how your respondents could perceive you (or the designated interviewer) and the purpose of the discussion. Their perceptions can affect the kinds of information they give you, so the way you introduce yourself and the project, and the way you ask questions, needs careful consideration.
In discussions with members of your intended audience it is important to recognise that people might not be aware what kinds of information they could hold. So, in addition to asking what they would like to know, you could show them examples of the information that might be included in an information package and ask how important or useful they think these would be. You might also want to explore what they understand by the information provided and how it makes them feel.
Healthcare professionals
Even if you have one or two healthcare professionals on your project team, discussions with others can be extremely useful.
This can give you a better understanding of: the kinds of information that healthcare professionals - with different backgrounds and levels of experience - think is important to communicate to people with particular health conditions who are considering or facing healthcare interventions the ways in which healthcare professionals describe and discuss health conditions with patients in practice the ways in which healthcare professionals offer and deliver healthcare interventions the processes that people might go through during episodes of care for a particular health condition.
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It may be important to talk with different types of professionals because they might focus on different aspects of health conditions and interventions, and may have different perspectives on these. For example, if you are planning to provide information about a surgical procedure, you might want to ask clinic and ward administrators to describe how people access healthcare and how 'the system' communicates with patients. Or anaesthetists how they discuss and deliver anaesthesia and pain relief. Or surgeons about what particular operations involve, and nurses and therapists about post-operative care.
Healthcare professionals' willingness to contribute to discussions may depend to a large extent on their working situation. Some may prefer to take part in individual discussions at their place of work, others prefer the chance to meet with their peers for group discussions while some professional groups might be willing to discuss issues during team or special interest meetings.
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