It is now mandatory for most, if not all projects funded by the National Institute for Health Research (NIHR) to include lay members as part of their Patient and Public Involvement (PPI) initiative. As lay members we can bring to projects practical knowledge gained either by caring for friends or family, or through our own experiences.  Using the analogy of designing a software project, we can provide the customer requirement specifications. Without them a piece of software would only reflect the views of the software engineers, not the needs of the people who will use the software. In the same way, a healthcare project that does not take into consideration the views of its lay members risks providing services that satisfy medics and academics – but not the end users of those services.

Lay team members, who are often but not always retired,  may bring to the project not only our practical experiences of the healthcare system but also other skills gained during  our careers such as information technology, communication skills, graphic design, website development, and so on.

However, the inclusion of lay team members has, in my experience, sometimes been met with resistance. Our input is at times under-valued, and our inclusion in teams often regarded as ticking the appropriate box in order to get funding, rather than genuinely appreciating and taking into consideration the practical experience that we have acquired over years, sometimes decades. This is what I call the credibility paradox – and the challenge is to ensure that lay members are accepted as integral components of the team, not just ‘placeholders’.

What can be done to remedy this situation?

Project managers should select lay team members carefully, assessing their suitability for the project and their ability to contribute to it.

Lay team members should:

• Choose to be involved only in projects where we can make a substantial contribution deriving from practical experience.
• Remember that our opinions, if derived from practical experience, are usually valid.
• If we don’t understand something, ask. It is highly likely that we will not be the only person on the team who doesn’t understand.
• Fight acronyms, abbreviations and highly technical vocabulary. People who have a good command of their subject can explain it in simple terms. Make them do so.
• Insist that the findings from research are disseminated to the general public if relevant. Most projects have an element of funding from taxpayers. Make sure that we all benefit from the research – and that we can understand it if it is relevant to our needs.

Non-lay team members should:

• Create an environment in which lay members are made to feel part of the project team. Value our input. Listen to what we have to say. Make sure our input is recorded in the minutes. We notice if the minute-taker stops writing when we are speaking!
• Make sure that project documents can be understood by us. How many abbreviations have you used? At a recent conference on PPI even the speakers were not always able to explain the meaning of all the abbreviations they used!
• Make sure that your project documents are attractively laid out, and easy to read. Use short sentences and short paragraphs. A picture is (usually) worth a thousand words!
• Identify areas in which we can truly add value, for example, communication and dissemination. (More on these below.)
• Find out what we read and, when disseminating the results of your research, make sure that publication is not limited to academic journals but includes popular magazines, newspapers, radio, TV, Facebook, YouTube etc. In order to reach these audiences, it is important to make communications accessible. If you only communicate with academics your research will have less social value and lack real world impact.
• If input is requested from the public, we can help to ensure that your communications are couched appropriately. For example, when communicating with residents of care homes it may be appropriate to use a large font and, as mentioned above, short sentences and short paragraphs. Be careful about using graphics. What might seem obvious to a graphic designer might be completely incomprehensible to others. For example, my father once wandered round Manchester railway station for about half an hour, deeply distressed because he couldn’t find the exit, which was marked by an icon rather than in words.
• Encourage us to disseminate our valuable knowledge and experiences by giving presentations and writing for relevant publications – such as NIHR ENRICH!

The NIHR also has a part to play. It documented its expectations regarding the inclusion of lay members in ‘NIHR UK Standards for Public Involvement’ published 1 June 2020: https://www.nihr.ac.uk/news/new-handbook-demonstrates-the-uk-standards-for-public-involvement-in-action/24948

It states, ‘the standards are a description of what good public involvement looks like and encourage approaches and behaviours that are the hallmark of good public involvement such as flexibility, sharing and learning and respect for each other.’