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In this Blog series, Professor Notley will start a conversation about different aspects of PPI and invites all for comment and debate. The first blog series reflects on ‘What is PPI and what is research?’ The difference between seeking patient or public involvement in a research study and actually collecting data as part of a research study, especially a qualitative study, can be confusing. There are grey areas. It may not be possible to give a definitive answer, but here is my attempt to navigate this distinction. The focus this time will be on consent
Consent
In a research study participants must always give informed consent to participate. This means they understand the purpose and scope of the research interaction (an interview or a questionnaire, for example). They are also told how their data will be collected and stored, and for how long. They are told how their data may be used in reporting the findings of the study. They agree to this by giving verbal or written informed consent. This is a formalized procedure.
In gathering input of experts by experience through PPI, the process and principles of consent are also important. PPI members should understand their role, what is required of them through the PPI interaction (e.g. taking part in a discussion group or a one to one discussion). They should have a discussion with the researcher beforehand to understand their role, any reimbursement, and how their views and opinions might be used to influence, for example, a research project in development. It is good practice to semi-formalise this in a written document setting out the role so that there is an agreement and understanding in place for both parties. However there is not a requirement for formal written or verbal informed consent. A signature may be taken to show understanding of the agreement. This is different from formal informed consent. The agreement is less rigid, and more flexible. Still, the principle of consent is important, and this really means a transparent and honest understanding of the PPI interaction, expectations and likely outputs.