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Patient information: Part 3. Collecting high-quality evidence

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Mark Duman, MRPharmS.

Freelance Health Communications Consultant

It is vital when collecting evidence for your information package that you consult all the stakeholders who you identified at the planning stage and, in particular, patients and carers. It is accepted practice now that the opinions of patients and carers are viewed as evidence in much the same way as clinical or medical evidence. You should aim to get patients' and carers' views on the following:

It is vital when collecting evidence for your information package that you consult all the stakeholders who you identified at the planning stage and, in particular, patients and carers. It is accepted practice now that the opinions of patients and carers are viewed as evidence in much the same way as clinical or medical evidence. You should aim to get patients' and carers' views on the following:

- The positive and negative aspects of their condition, including diagnosis, medication and treatments

- Any unfulfilled needs that they might have

- Their information needs

- Their participation in the decision-making process and treatment choices

- Their overall satisfaction with the care they have received to date.

By involving patients and users right from the start you will ensure that the information resource you produce will best meet their needs. Only patients can tell you what it is like to actually live with an illness or condition and which questions they need answering. If you look at things from this perspective it is clear that by not including them you may well produce a leaflet which has up-to-date facts and figures but which is of no practical benefit to the people it is aimed at. There are five main stages at which patients and carers' views should be sought (Box 1).

Collecting patients' and carers' views
There are several key questions that you need to answer to determine how you are going to collect the evidence that you need. Start by asking yourself what kind of people you need to involve. For example, do you need to consult newly diagnosed patients and their families or should you seek the opinions of existing patients? Make sure that the group you choose is sufficiently broad to encapsulate a range of views. Other factors to consider are the age range of the group, its ethnic diversity and whether you need to have the views of both sexes or just one.

At this stage you also need to decide which method you are going to use to collect your evidence. Are you planning to use sampling methods and, if so, which will be the most appropriate? Having collected your data how are you going to analyse it? Do you have access to the necessary computer software? If you do not have experience of research seek advice from a local academic or audit department. It is also necessary to check with your local research ethics committee to see if you require approval for your research before you start.

Methods for gathering evidence
There are many different approaches that can be used to gather evidence for your information package. A few of these are discussed below.

Focus groups - A focus group can consist of up to 12 people who have been selected from the groups that will be using your information package. Focus groups allow you to collect patient and carer views quickly. They can also act as a forum for discussion and often result in new ideas being generated. A successful focus group requires a skilled facilitator and careful planning with a topic guide. The discussions should last between one and two hours and should be recorded in some way. Transcripts should then be analysed by someone experienced in this field. It is good practice to offer participants expenses and to ensure that they receive feedback following the analysis.

Surveys - Surveys are used to gather information through use of a questionnaire. The advantages of surveys include the ability to gather vast amounts of information quickly and, if a properly designed questionnaire is used, they offer statistical reliability and validity. When writing a questionnaire care needs to be taken to ensure that the author does not introduce bias into the questions and that they can be easily understood by the people who will be answering them. Questionnaires should be piloted with a small representative group of those who will eventually be your main sample. Surveys can be carried out by either sending questionnaires to your sample group or by administering them on a one-to-one basis. Analysis of the results is usually performed using a specifically designed computer software package.

In-depth interviews - These are useful in that they can allow the interviewer to gain a vast amount of information by allowing individuals to give in-depth and spontaneous responses to questions. The interviewer should use a checklist of topics as a prompt and interviews should be recorded and transcribed afterwards. This method is very time consuming.

Collecting the views of professionals - It is important that you do not neglect the views of professionals when collecting evidence for your information package. This is especially true if you intend to include up-to-date evidence about conditions or treatments. Professionals' views should be collected at the planning, involvement, testing and review stages of the information production process. The professionals' views can be collected using the methods outlined above.

Collecting clinical evidence - Clinical evidence must be information that is based on a well-conducted systematic review or a well-conducted piece of primary research if a review is unavailable. It needs to be relevant to your target audience, for example it should match their age, sex, disability and ethnic background profile. It should also take into account the need for patients to have an understanding of their treatment options including alternative therapies and the concept of 'watchful waiting' (doing nothing active).

Your search for the best quality clinical evidence can begin locally with public health departments, medical schools and university departments. Other places you could search are audit or quality departments and clinical libraries.

There are also specific organisations and projects that are good sources of clinical evidence (see Box 2)

This paper has discussed the types of evidence that you should gather in order to provide a comprehensive information package and has touched on some of the methods you can use to achieve this. Once you have collected the evidence you need you can start to think about how you are going to present this to your target audience. You may need to think of ways to translate medical jargon into more easily understood text and should check where local practice and treatment options vary from the national standard. The next stage is to decide on the actual content and presentation of your information package.

Next month's paper will look at aspects of presentation, including choosing a medium, readability, which style to adopt and production issues.

- Mark Duman is author of Producing Patient Information: How to research, develop and produce effective information resources. Available from the King's Fund at:

Further reading
Booth-Cliborn, N., Milne, R., Oliver, S. (2001)Searching for high-quality evidence to prepare patient information. Health Information Libraries Journal 18: 75-82.

Centre for Health Information Quality. (1999)Involving Consumers in the Development and Evaluation of Health Information. Winchester: Centre for Health Information Quality.

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