The changing face of public involvement in research teams

By Dave Green

In November 2011 my patient and public involvement (PPI) colleague, Sharon Goodchild, and I wrote an article for the INVOLVE newsletter outlining the research project we were involved in as patients. This project is now finished so it is an opportune moment for me to reflect on our contribution to this project. 

The research, which was carried out by the Institute of Health and Society at Newcastle University, was part of a wider programme of research looking at how best to involve patients and families in improving patient safety. The ThinkSAFE approach to improving safety was developed following an extensive collaboration and consultation with a broad range of stakeholders – patients, their relatives, and frontline healthcare and ancillary staff.

ThinkSAFE has four components: a video guide to patient safety for patients and their families; a patient-held healthcare logbook linked to the video content including patient question prompts; patients being encouraged to ask questions and to tell staff if things don’t seem right; and staff being encouraged to actively foster patient involvement by saying to patients “It’s OK to / I want you to ask me questions”.

This is a very brief outline of the ThinkSAFE approach. While this was a pioneering study in its own right this article is concerned with an aspect of that study, namely the opportunity offered to extend the role of the patients and to make us an integral part of the research team. It was evident that in order to be fully involved in the project we needed to be brought up to speed on research protocols, terminology and methodology. This was achieved in a series of informal monthly seminars given by a senior research fellow. Without this support neither of us would have been able to partake fully in the activities of the research team.

We negotiated our roles within the team, realising of course that there were activities within the research project that we were not in a position to do. Nevertheless, our activities included observation of focus groups, analysing focus group transcripts, recruiting patients for the project, helping to design patient questionnaires and taking part in a ThinkSAFE video. The opportunity also arose to present personal experiences of the project and disseminate the results of the project to wider audiences. I have had the pleasure of presenting at conferences, seminars and away days, including a British Science Festival event.

An invitation was extended to get involved in a debate on the role of patients in research. I spoke for the motion that patients could take much more responsibility within the research team and that research was something that was not only carried out by professional researchers. One of the issues raised in the debate was about terminology, and it became clear that patients who are there as part of the research team should not be referred to as ‘participants’.

Another concern about patient researchers was the idea that they become too ‘professionalised’, losing some indefinable ‘something’ that they bring to the research team. A ‘professional patient’, if there was ever such a thing, suggests that the more skilled and knowledgeable you become the less effective you are. Only by doing research on the impact of ‘lay researchers’ will we get a clearer idea of the way forward.

The Institute of Health and Society’s project on patient safety has shown that inclusive teamwork arrived at by discussion, negotiation and good humour can enhance the role of patients or ‘lay researchers’ in research teams. For me this has led to a new concept of the lay researcher as an integral part of the team and not just as a bolt-on extra to obtain funding.

So this research project on patient safety has developed in some very interesting ways and has, I hope, opened up new channels of discussion. We look forward with anticipation to future developments.

Contact: Dave Green