Francesco

Age at interview: 57

Brief Outline:

After having a heart operation, Francesco decided to give up his job. There is a history of heart problems in his family, so he wanted to do things he was passionate about while he still could. He has been a patient and public representative in health research for about 11 years.

Background:

Francesco is married with two children, aged 21 and 18. He is retired, but previously worked as a manager of a residential children’s home. Ethnic background: Italian.

More about me...

After having a heart bypass, Francesco took early retirement. He had researched his condition and decided to stop working so that he could do the things he wanted to do rather than waiting until later. He didn’t want to rely on benefits so started trying to find paid roles in groups, and on boards and committees. He became a lay reviewer for a funding body, and has been involved in reviewing research protocols, funding applications and participant information sheets. Over the years he has learned to work more quickly so that these tasks don’t take as much time as they used to. 

He has undertaken training relevant to PPI, including a course that is being piloted by a university to train service users, carers and members of the public in assisting lecturers and researchers in delivering teaching and training on health, social care and medical issues. Most of the others on the course work on diabetes research and this slightly concerned Francesco because he thinks it should involve a more diverse range of people with different research interests. 

Francesco thinks PPI should be about doing what interests you as well as what you can add value to. When he takes on a research project, he makes it clear that he will only be involved for about three years unless it is something he is interested in completing. He has travelled all over the country to work on projects and with groups that interest him, but would like to be based closer to home. He is keen to become a research partner at his local university. This role would give him access to the university’s resources. He said it would “confer status” and elevate his position because his work would be recognised and he would be paid. 

As well as becoming a research partner, Francesco would like to take part in a research study. He would like to understand the experience from the participant’s point of view so that he can bring that knowledge to his PPI work. He hasn’t been able to take part in any research to date because he wasn’t eligible or the studies would involve too much travel and no payment, so he couldn’t justify spending time on them. He has done a lot of voluntary work, but still needs to earn money. He thinks it is important that researchers think about budgeting PPI costs into their funding applications. They should ensure that people are never out of pocket and that those on benefits have the costs of their involvement paid in advance so they avoid getting into trouble with the government. 

Francesco wants more openness about what opportunities there are and how people are selected, rather than finding volunteers through personal contacts.

I'm not a research partner, which I haven't been, although I'd love to be, you know. How could I improve on that practice if I've not had the opportunity? But not everybody gets that opportunity. So it's about putting everything into the pot and it'll be really good because then it would create more additional opportunity for people, some of it which might not be relevant to me but to someone else but like I say if each researcher or academic had their own little pool of people. Like at the university that I'm involved with I could have been asked for a particular project but the PI, the principal investigator, it was word of mouth with four individuals. 

OK the protocol when it got funded didn't indicate that it said it would be interviewed, but I had a word with the person, I told them, "I don't know if I can be part of this reference group because I believe in openness and transparency and equal opportunity." And as a result of that he made a statement of intent that he hadn't thought about it and he should have really opened up the opportunity for all people. But it's like the convenience because these people – I'm the new kid on the block, you know – these other people have been around a lot longer than me for ten, twelve years. I was, you know, I've just been there two years and that. So things have been done a particular way because it was convenient but, you know, I believe in openness.

Francesco got involved to find out more about heart disease. It was also a way to get some ‘pocket money’ as he has no pension.

I became interested in research because after I'd had my cardiac surgery I just wanted to know, understand about longevity and I looked, I think, I don't know if it's still up here in Oxford, but there was a publication called The Bandolier that was published by Oxford University Press. And I just wanted to see how long people lived after they had such procedures and, you know, three in ten pop their clogs after ten years and five out of ten after fifteen years. And I kind of thought to myself, 'Well my Dad died in the coronary care unit after his second heart attack and my mother died on her…’, but she was older so she wasn't that strong. So there, you know, there's a family disposition, pre-disposition unfortunately, it's like my grandmother in Italy. So I decided to give up work and have my retirement when I was fifty because I wasn't going to chance waiting till I was sixty-five because I might not have got there. It comes at a cost because I don't do benefits and I don't claim, sorry I don't do benefits and I haven't got a pension, so I had to find a way of doing what I wanted to do to get a couple of bob. 

So joining various groups, boards, committees that made a payment was ways of just, you know, just putting pocket money into my pockets. 

Academics seem to choose people they feel comfortable with. Francesco wants to see a fairer, more transparent process.

Now because academics, researchers are comfortable with particular people that understand their way of working, so they end up being research partners or associates because, you know, they got their Master's degree when, you know, it doesn't really give opportunity for people that might have not had, you know, whatever, for whatever reason a more formal education. 

So in the areas of mental health it's – this is just observational, it's not a criticism – it tends to be middle aged females that seem to dominate the research parlours. Maybe, OK that could be just chance, you know, that men are at work, they die a lot sooner than women because they've worked a lot. I'd better be careful, don't kick me on the shin. They, because they work a lot harder and, you know, men kind of like get to go six feet under a lot sooner, you know, longevity, life expectancy, you know, more coronary heart disease whatever. But what I'd like to see is an advertisement for involvement for PPI – people express an interest, not the old boys network, funny little handshakes like the Masonic Lodge and that or nepotism. I can't abide by that because, you know, I'll accept any amount of not being taken on as long it is a fair process because I wouldn't expect any favours. 

Being paid is important to Francesco. He sees his skills as something valuable to researchers.

I don't know that necessarily I've derived a benefit of kind as a result of meeting all these various people because ultimately I'll stand by what I'm able to offer in an open, open process. Fine – if you don't like me because I am who I am – I'm, you know, not in your face like but I don't take, I don't take crap. You know I can find another opportunity or find somebody that doesn't know me then I have to kind of like steady things down. No, if I've got a particular, I don't know, if I can sell a particular skill or experience that might be of benefit to an academic or researcher that's fine, then there's a marriage of convenience. Show me the money and I'll give you my time. You know that's how it is with a lot of people, I'm just being upfront. You know when we had a public issue people wanted to know what they would get paid. Now I don't know where they got the idea from but I do, you know, I don't expect things that are open like going to a seminar, a conference or training that you get paid for. That I understand, some people think that you should. 

You know it's not, I know that research staff or whatever they will get paid but then they've got a contract. If you haven't got an honorary contract, don't expect something for nothing. I live by that, but then if I'm kind of like preparing a day's training on equality diversity for the mental health Trust, I know that this half a day is a hundred and twenty; if it's a full day it's £240 for the day. Done that very few times because I'm sure they can't afford to keep doing that all the time but you've got levels of payment. What is important with people's involvement, not only with the payment, although that helps so you're not at least out of pocket, is how you will be able to perform the task, be it voluntary, and what will that enable? When we had that meeting we couldn't actually say what we could offer them because, like I said, we're here today whether or not this, which we will because nobody else put a bid in. 

Researchers should ask people how they’d like to define themselves. Francesco chose to be called a ‘public contributor’ rather than ‘service user’.

The one thing that I would say to professionals when you're involving people in research is allow the individual to allow, allow them to define how they want to be known because they would probably, they were probably given a first name before any other name. Oh there's baby Anne-Marie there, you know, they weren't a service user, they weren't a patient, they weren't a client or a carer, but some people, their marketability in terms of being involved in research as a result of their lived experience, so you know, if they want to refer themselves as a survivor then fine because that's their selling point. 

It immediately has, you know, meaning to people at the other end. I've always been a public contributor when I was on the health services and delivery research board, I got the names changed. But that was personal to me. And the other person he was quite happy –service user board member. I didn't want to be known as a service user, I want to be neutral, generic but allow other people, allow themselves to define. That's why we've got the name public advisory group. And then individuals can self-define themselves through their biography. I think it's quite important that and then what you have is the skilled knowledge base.