What does ‘Public Involvement’ mean?
Involving the public in your study is important, especially at the research design stage. This is called ‘Public Involvement’ (also known as ‘PPI’ [Patient and Public Involvement]). Public involvement in research means research that is done ‘with’ or ‘by’ the public, not ‘to’, ‘about’ or ‘for’ them.
What is the benefit?
By seeking the opinions and recommendations of the public, it is a great way to ensure that your study is designed and set-up in a way that will be relevant to participants, and of good quality.
This can also help to avoid any setbacks once the project is underway. A few examples of this could be –
- Scheduling research clinics at 08:30 in the morning at the hospital – whilst it may work for the research team, you could find that the majority of your participants can’t attend the appointments, as they are unable to use their bus pass until 9 o’clock. As a result, recruitment could be slow and you will have higher rates of non-attendance or higher drop-out rates.
- It may be that you have written an information sheet for the participants, and you feel it is clear and understandable, but when it comes to seeking the advice of those with the particular health condition/experience, the information needs to simplified or expanded upon to better inform participants of the implications of their participation.
- Another example could be that you plan to ask participants to undertake a number of assessments/tests during the study, but on further discussion, it arises that it is too much of a burden on the participant group. The discussion also highlights that in fact the result would still be significant having removed a few of the assessments.
By having undertaken Public Involvement, the review of the research by the NHS Research Ethics Committee (REC) may be more streamlined; as potential issues have been identified by your Public Involvement participants before the REC receive the application. In most cases, having not undertaken some form of Public Involvement, the REC will expect to hear your rationale as to why this wasn’t done.
NHS REC approval (favourable opinion) is not required in order to conduct Public Involvement. To find out which reviews your project needs, please use the HRA decision tool.
Health Research Authority guidance
Recently the Health Research Authority (HRA) have published a section on their website that includes guidance and resources such as appropriate standards and policies and case studies.
The HRA likewise released guidance last year to help applicants better identify where they have involved the public in their research applications, and the difference that it made to their studies. The guidance sets out how applicants should present their information on public involvement within the Integrated Research Application System (IRAS) in a way that is most useful to NHS RECs.
National Institute for Health Research guidance
The National Institute for Health Research (NIHR) likewise offer a wealth of guidance and resources, specifically the NIHR INVOLVE group.
The site contains items such as –
- briefing notes for researchers,
- examples of the impact of public involvement in research and
- further learning and development, etc.
Support is available at BU via BU PIER.