Anthony

Age at interview: 77

Brief Outline:

Anthony has been involved in health research as a lay representative for about seven years. He started off by volunteering as a research participant and was then invited to join groups as a PPI representative.

Background:

Anthony is a retired teacher and education inspector. He has two children aged 43 and 41. Ethnic background: White British.

More about me...

Initially, Anthony got involved in research as a participant. Soon after, he began to receive invitations to sit on committees and join groups as a patient and public involvement representative. His work has included improving service delivery in several healthcare trusts as well as PPI in research. 

Anthony believes lay representatives should be included in all aspects of the research process from design to dissemination. He has been extensively involved in several different ways: as a co-applicant on research projects and as a reviewer of funding applications, research protocols and information sheets. He thinks researchers have a duty to give participants clear, reliable information about what taking part involves and that lay representatives can be helpful in ensuring this happens. When he considers any aspect or piece of research Anthony asks himself if it is something that any patient in any situation could understand. 

By including people with a diverse range of experiences, researchers can find out what impact their work can have on people and how best to maximise this, and Anthony believes this adds value to research. He believes everyone can be involved in PPI; they don’t need to have a great deal of technical knowledge because life experience is sufficient. Even the simplest questions a lay representative might ask can have an important impact on research. 

Curiosity was what initially motivated Anthony to get involved in PPI and he has continued to be involved because his work benefits him and others. He feels he can positively influence research and the way doctors and researchers speak to and think about patients. The benefits of his engagement in PPI far outweigh its cost, which is mainly giving up free time. But, as Anthony said, “What could be more important than talking about the ramifications and the possibilities of research?”

Anthony encouraged researchers to continue to engage PPI representatives and to work with them as partners. He also stressed the importance of disseminating research findings because researchers have a responsibility to do this especially as they have been funded through public money. 

As co-researchers, people can get involved in designing studies, collecting and analysing data, and disseminating findings through talks and written papers.

I think it's important to involve members of the public at all stages so that they're not only involved in the planning and the development of the project but then are engaged in what I think are just as important, in fact in many cases more important, that where possible they're involved as co-researchers. So, for instance, they may be engaged in collecting data or they may even be involved in analysing data. Now it depends a bit on what the data is but I think the principle is important to say, "How can we involve members of the public in this research?" Not least, for instance, in ways where they're talking with people who are participating in the research to find out how it went for them – what benefits did they get out of it. They should, and again this is going back to communication, should be involved in helping to write up the research, not necessarily, obviously, the technical part but involved in helping to interpret that so that it's something which the public generally will understand and certainly those who have taken part in it will understand. Then, if possible, to involve them in promotion of the research findings, the dissemination and I put the 'if possible' because not everybody may be willing and able to speak in public but I think it's important to try to encourage people to do that because the engagement of the public in the research is just not going to benefit the research, it's going to benefit those people who take part in that they will learn, they will engage and they will acquire new skills, different skills; how to talk with researchers, how to persuade researchers, how then to go on and help them write the research project up and learning skills in how to disseminate because what they will do is be the best advocates of the research as far as the public is concerned that you could have because they are talking about what's happened to them to people who , like them, and the more you can encourage people to be engaged the better. It's going to be helpful to everyone and I think that not only will they benefit intellectually and socially and in confidence, they'll have fun and just by learning.

Anthony is a member of a ‘Research for Patient Benefit’ panel which decides which research proposals will be funded.

The East Midlands Committee for the National Institute for Health Research and the particular group, the Research for Patient Benefit I've been a member for just over a year and this is taking the involvement in research groups a stage further. So I've talked about how interesting and really exciting to be involved in, not just in taking part as a volunteer in research, but going on to being able to contribute in committees about proposals for research. This is the next stage where those researchers are submitting applications for the research funding from the National Institute for Health Research and as a member of that group, a lay member because it's mainly very important clinical researchers and statisticians and those with specialisms relevant to this research, lots of professors, but there are one or two of us who are lay people and what we do is read and report on those applications that have been submitted. 

We obviously don't do those which we ourselves have taken part in because we have to be detached and make judgements based on our views of those documents. So you, you then see what the researchers are trying to convince the committee of the value of what they're proposing and so you will have , again, research which is, is by definition not only new but is sometimes doing something which is breaking ground which, for a lay person, you're surprised for two reasons: 1) that somebody has made, that there is a possible connection between doing this and the result, and also sometimes saying, “Well it's surprising that that hasn't been done before,” but you know why it hasn't been done before because the originality is that somebody has just thought that, well there is a connection there; and it is an, an impressive committee to be on in that you realise the breadth as well as the specialist understanding of these clinicians and the way in which they can be detached about the work of their peers where they're looking at people; [heavy rain in background] and they know by name and know the quality of the work and analysing what they're doing and saying that this , this has merit or doesn't have merit. 

Anthony feels general members of the public bring a valuable different view.

The skills that a PPI representative has to have is to bring their own experience to whatever the project is and it needn't be anything which is technical, clinical, academic, it can be just their breadth of experience of life, because with that background they will have understandings and insights into issues that can be brought to bear even on something which is clinically very sophisticated. And it can be something simple, the obvious example that can be inhibiting for anybody – views on having blood taken. Will it hurt to have a needle put in your arm? How much blood are you taking? If you put it in millilitres it needn't necessarily mean anything to anybody. If you describe it in teaspoonful's that can raise a question [laughs] – "What do you mean your teaspoon, you're taking a teaspoon." 

But it can be things which they've had experience of in, in their lives that may be about trauma, inhibitions; it may be about experience of relatives, you know, "My auntie died of this or had that and she needed this, we didn't know whether we should do this, we couldn't understand what the doctor was saying or what the nurse was saying." 

And I think that's, that's one of the main contributions that lay people can make, "What does that mean? What does that mean for me? What does that mean for my friends? What will it mean for the future? Will it make me better? Will it make my auntie better?" So it's the questions isn't it that anybody can bring – why, what, how, when, what if, will it, how soon will it – and sometimes clinical researchers may not, but usually they have, may not have thought of the issues with that simplicity so I'm, I suppose making a case for public and patient involvement to make research as simple as possible in how to understand it, what it's going to achieve and how you tell the public about it.