Patient and Public Involvement in Health and Social Care Research by Jurgen Grotz & Mary Ledgard & Fiona Poland

Author:Jurgen Grotz & Mary Ledgard & Fiona Poland
Language: eng
Format: epub
ISBN: 9783030552893
Publisher: Springer International Publishing

4.6 Inclusion and Exclusion

We can now more fully appreciate how and why being alert to the issues that relate to including and excluding people from research and from research processes, is almost universally seen as central for designing research to produce findings which can build knowledge about particular groups and populations (Council of Europe 2012). This is underlined as an ethical issue when we want to ensure that research is sensitive and applicable to all the groups or populations that it needs to apply to and is therefore inclusive. However, we may also have noticed in following the journey of this chapter, that it will also be an ethical issue for reviewing research and for RECs, if we are to include every lay or stakeholder group that needs to be taken into account.

Deciding how many people and with what characteristics are to take part in a study will be covered in its research design. The research design will set inclusion criteria for how many people of what type to include. In quantitative clinical research, this will be decided by statistical measures used to calculate group sizes needed to represent wider populations. In qualitative research on peoples’ views, beliefs and experiences, it will be decided by identifying people likely to be able to provide relevant knowledge. However, there may also be groups defined according to exclusion criteria, who may need to be excluded from the research. This may be because they would be exposed to unacceptable risks of harm specifically related to their situation if included, or because they do not have the language, skills or resources needed to take part in activities or conversations through which the research data is collected, or because they are unable to give informed consent. In some cases, we may need to question how far these are acceptable exclusions, or whether they relate to questions of access which might not arise with the provision of adequate funding for support resources such as interpreters or personal assistants.

Setting out inclusion and exclusion criteria is therefore an important part of preparing to apply for research ethical review of a health or social care study, as well as key to the research design. This is to make sure that people are being appropriately included; that is to say appropriately in terms of being the right types of people in the right numbers to fit the purposes and design of research. It is also concerned with the capabilities of people to play their part in research and to be facilitated to do so by being provided with appropriate information, support and safeguards to take part fully and safely. PPI members of RECs will have the experience and understanding to consider how appropriate these groups and arrangements to safeguard and support them may be. Similarly, exclusion criteria need to be ethically reviewed to ensure that groups are not being excluded for inappropriate reasons. These might be because the research team is failing to be aware of actions which discriminate against particular

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