Beryl

Age at interview: 64

Brief Outline:

Beryl has been a PPI volunteer for two years. Her involvement started when her daughter had cancer and she became her carer. She is now part of a voluntary group developing patient information materials for clinical research.

Background:

Beryl was an NHS manager for nineteen years. She is divorced and has two children. Ethnic background/ nationality: White English.

More about me...

Beryl is now retired but worked for 19 years as an NHS manager, so she has been used to working with clinicians. After her daughter was diagnosed with cancer, Beryl attended a cancer conference in Liverpool. She met representatives there from a hospital in London and decided to volunteer as a PPI representative in research. In 2012 Beryl was also diagnosed with cancer and her role changed from caring for her daughter to becoming a patient herself. 

Beryl has been involved with research for two years, and she is in regular contact with cancer researchers from the NHS Trust she works with. One of her responsibilities is to read their applications for research funding and to help make the technical language more understandable. She gives the researchers a summary of her thoughts and recommendations on one side of A4. 

Beryl’s main reason for getting involved in research comes from her experience of caring for her daughter. She sees one of her roles as being that of a patient’s advocate and she would “love to do something with PPI… for patients now and patients of the future” to enable them to give their perspective on health care provision. Beryl believes we are all patients at some time in our lives. She thinks patients should be treated with honesty and courtesy by health professionals, and that their views should be incorporated into research and care.  

Until recently, Beryl’s group wasn’t informed about the outcomes of the research papers they reviewed. They asked for this information and now know how many studies went on to be funded and what difference the research made. This is very important to Beryl because she believes research should be done with patients in mind and should have a positive impact on their lives. 

Beryl fears that some researchers consider the involvement of patients and members of the public in research as a “tick box exercise”. She firmly believes that if research directly involves patients then their involvement must be made a condition of funding. 

As well as being a PPI representative in research, Beryl would also like to be a lay member of a GP group. She heard about one that was looking for representatives, but was put off volunteering when she found she was required her to submit her CV. She thought this was unnecessary for someone who was volunteering their free time. 

When Beryl worked in the NHS she had a mantra for doctors who lacked what she believes are the basic people skills needed for a good doctor-patient relationship. “I used to say, ‘Talk to the patients, don’t talk about them. Talk to them’”. 

Beryl explains how lay input can improve the information given to research participants so it is clear to them what the trial is about.

What we do is we meet, once every two months, sometimes we meet more frequently, because at the moment we’re holding an open evening where we invite all the researchers from [hospital name] to talk about their experience with patient and public involvement and we talked to them about how we feel the research papers that are sent to us…There’s a lot more research papers being sent to us, to our group, because I feel that there needs to be, and there is more patient and public involvement. And we have to just look at the research papers to ensure that they are not very wordy and technical and a lay person could understand them. And then we feed back and actually we’ve devised their own form now, because someone had to collate all our responses and it was getting a bit messy, because you just pulled out the bits that were relevant, whereas now it’s all on one form and they can just be sent straight to the researchers.

I think only because we look at the research papers and the only part that I’m really involved in is making sure that patients understand and it’s actually on the paper what their involvement will involve. And it’s in the words that they understand and they’re not scared of, you know, because sometimes you read these where you’re thinking, you know, it’s another language, and if you want people on your side, it has got to be not too wordy, and it has got to be in lay person’s understanding to actually get them involved. And I don’t think a lot of research papers that we’ve read have said that, and that’s why I questioned is there a paper that goes on the top when you send for your funding that has got to be in lay words?

And you know you talk about how you review research papers. What do you actually mean by research papers?

What they do is they send us the papers where they hopefully are going to get funding.

Right.

And they explain what the clinical trial is and we just have to look at it to see whether, people would understand what the actual trial is and what the outcome is and what they’re involvement would be and would it affect their treatment? Would their treatment stop? So we, we try and put our thoughts on an A4 sheet of how we think that they should, to be able to bring these patients in to their trial otherwise I don’t think most people would, it would just go over their head, they wouldn’t understand what they were saying.

People need to be trained because research is a specialist area.

I think you would need training, because you know, you could be looking at something the wrong way or looking at the data, especially data. Because people look at data so many different ways and it all depends on what you’re looking for and people have training to be researchers so I think if you wanted someone to help the researcher, that’s a lay person, then they would need training in to understand a) what they’re going to ask the questions, because they might bring their personal [experiences in] and it’s not personal, its research. So I think you’d need quite a lot of training. Or maybe just a little bit of training. I don’t know. It all depends what your background is.

Beryl enjoys the friendships with other people on the group who’ve had cancer.

In terms of your involvement in that, what do you think the benefits are for you being involved in your PPI group?

The main benefit I feel is that it gives me an opportunity to talk to people that have had cancer and they’re all positive and some carers come to the group - and then obviously understand what research is going on. I think we’re just a tiny proportion of all the research that’s going on and as I said I just like it because I can go up and they’re a really friendly bunch and we get on really well, and it’s not doom and gloom when everybody’s talking about their cancer.