David Z

Age at interview: 68

Brief Outline:

Following his retirement, David participated in a focus group study to evaluate the experience of stroke survivors and their carers. He became interested in PPI in December 2010 after receiving an online advertisement inviting the public with relevant experience to apply to become lay members of the Stroke Research Network Clinical Studies Group or the Stoke Association Lay Members Panels.

Background:

David is married and has two grown-up children. He is a retired senior university lecturer. Ethnic background: White/British.

More about me...

After his father-in-law had a stroke, David became a service user representative on a committee looking at service delivery for stroke survivors. When he retired from that, he applied to be a lay member in the Stroke Research Network. He was accepted as a member after being interviewed for the position. 

As a patient and public representative, David’s role involves reviewing and commenting on documents that researchers have written, including research articles, poster presentations for conferences and public health pamphlets. Because he is visually impaired, he finds it easier to read documents on his computer screen. This can make his eyes ache so he takes regular breaks. 

David thinks it is important to involve members of the public in research because they help to ensure that public funding is used in the best way to benefit stroke survivors. He feels he can apply both his professional experience teaching nursing and his personal experience of caring for his father-in-law to his PPI work in quite an objective way. He has no problem speaking to professionals after becoming used to that throughout his career, and feels that he has been treated respectfully by the researchers he has worked with. They have appreciated and valued the feedback he has provided. Some have commented on how his opinions changed the way they thought about their projects. As a result of some of the feedback David provided, he has been invited to sit on a trial steering committee. 

In his clinical and educational nursing roles David saw how research benefits practice, so he was keen to take part in PPI. His reasons for being involved are altruistic – he helps others – but they are also “selfish”. He said, “I get an immense pleasure from it. I feel that I am doing something and I’m engaged in something that is benefitting others”. 

Initially, David planned to go overseas to work with the Voluntary Services Organisation when he retired. Unfortunately he was unable to do this and got involved in PPI instead because he didn’t want to waste the knowledge and experiences he had gathered over the years. Getting involved in PPI in health research has allowed him to continue to help others in an interesting and personally beneficial way. 

David Z (a retired nursing lecturer) got involved for both altruistic and ‘selfish’ reasons after his stroke. It brings together his work experience and his love of volunteering to help others.

Well there’s multiple components. I went with the VSO because I came to a point in my career. I had initially, as during the training, thought that I would like to do this while it was new, when I was completing my training and I was advised by my principal tutor to get some experience before I went. I then moved into a senior role in an operating theatre. I was very comfortable. And I really got into a rut and I realised that I needed to get out of the rut. I saw a letter from VSO and thought “oh I can do that”. 

So there was a sense of challenge and it was a real professional challenge, but that job that I did gave me immense job satisfaction. I got more job satisfaction from that role than any other job that I did. And so I benefited. There is an altruistic purpose, but there’s also selfish element. When I was in Ethiopia I had a religious conversion and so you might say that there’s also a religious element. Well the thing that motivates me is that I know from personal experience that research benefits practice. That practice can only be developed through trial and analysis of what works and what doesn’t work and so I can bring together my professional experience, my personal experience of caring for stroke and my enthusiasm for living, and I enjoy doing the role. I get an immense pleasure from it. As I say there is an altruistic part, but there’s a very selfish part as well, because I feel that I’m doing something and that I’m engaged in something that is benefiting others.

Is there anything you think I’ve missed that you thought you wanted to say this morning before I arrived?

I don’t think so. I think you’ve given me the opportunity to bring out all the areas that I considered in advance. I’m comfortably settled now I’m retired. I enjoyed my work throughout my professional life and I don’t want that experience that I had to be wasted, and the fact that I was unable on retirement to go back overseas with VSO, which had been my retirement plan, meant that I was looking for a new direction and I found it through stroke, but I have benefited as much as I hope I’ve contributed to improving the life and experience of other people. So for me, it really completes the circle and I’m able to draw on life experiences, professional experiences and I’ve got the time to do it.

David Z has always felt his involvement has been highly valued and he’s been listened to.

Well my own experience is that the service user participation in the Stroke Research Network is highly valued. That the researchers in the Stroke community do take account of the involvement of lay members. Indeed the chair of my Clinical Skills Group is adamant that involvement is a very high priority and I heard her speak at the recent Stroke Forum to potential researchers about the importance of engaging with the Stroke patient community or the public in first of all identifying the research priorities, identifying the content and the way that the research might be organised so that the views of the lay members is taken into account when designing a research study, and then engagement with them right the way through. And not simply seeing them as data and people who will enable the person to receive academic credit, and really looking at the real meaning of the research and that is to improve the life of people who have experienced stroke, and to enable care to be given in a much more effective and efficient manner.

David Z heard a presentation at an INVOLVE conference about why researchers find involvement difficult. He thinks some of it is an excuse and could be easily addressed.

I didn’t speak, as I didn’t present anything, but I certainly contributed to discussion and debate in the papers that were presented and in the discussion that followed, and I found it really enriching and there were people, who in their presentation acknowledged that some, when they had carried out a survey of researchers within their university very few had responded to their email survey and the ones that did indicated some of the reasons that they wouldn’t engage with or that they found difficult to engage with the participants of the research.

Some of it was due to a lack of understanding of what might be expected of them. Some of it was due to the feeling that they hadn’t had any training. But my own experience is that if you approach people and share with them what your objectives are, it’s not difficult for people to then respond to that and to try to improve on anything that you might, might produce and I wonder whether it’s an easy excuse.

I recently read a paper, only this week, that was published in the Nurse Researcher and had been forwarded to me. And this was about a research engagement at a university where there was an active engagement with patients and carers and they called it the… Patient Carer Advisory Group and they discussed some of the difficulties that they had experienced. Some of it was budgetary and the fact that they hadn’t anticipated the additional cost that it would be. But if people then read that paper and respond to it, and in their initial proposal include sufficient budgets to enable participation, you know, someone who has suffered a stroke may need a carer to attend with them, so travelling costs or hiring of appropriate accommodation may be greater and this came out in the paper.

But as a consequence the researchers felt that their research had been improved and that the, there was conflict between them and the patient group because the patient group wanted to edit some of the contributions by some of the subjects in the research. I think if ground rules are set by the researcher and the advisory group, then there should be no problems.

David Z gives an example where patient involvement led to a decision not to conduct a study that they didn’t feel was worth pursuing.

I’ve only limited experience at this stage, but listening to some of the members of the group, they have made an impact. One of the members of the lay group produced a video that was, that has been used to help people understand the lay members participation. There’s been papers written on how the a potential study was pulled because the lay members couldn’t see any benefit to the Stroke Community in conducting this research and felt that it would be a waste of time and money to carry it out and the researcher was honest enough to admit that [2 sec pause] that the research which he thought had got merit, was seen by the Stroke Community not to have had the merit that he had thought, and he has written a paper explaining this. 

And I should think that this is really important, that public money is not wasted on research projects which may not have the desired benefit for the person who has experienced a stroke.