Rosemary Nicholls lives in Saltburn, Cleveland. During her working life Rosemary held various paid and voluntary roles in education. Rosemary was also a volunteer and trainer with a national bereavement charity for 10 years. Over the last few years, she has been sharing her views as a member of the public to improve the activities of a variety of research organisations. This includes joining the NIHR Newcastle MIC insight panel for patients, public and carers in 2020.

Why did you decide to become a public contributor and how did you find out about it?

In retirement, I’ve received emails from, and attend meetings with, the Redcar and Cleveland Voluntary Development Agency (RCVDA). I like to write articles for our local town magazine and I’m always on the lookout for stories. About six or seven years ago, I saw an advert in the RCVDA newsletter to become a member of the NIHR Research Design Service for the North East and North Cumbria Public Involvement Consumer Panel. I made an application, had an interview and I was successful. I’ve absolutely loved being involved! I then looked for similar roles and found out about other opportunities through the panel. I’ve become a member of the NIHR Newcastle MIC insight panel, answered adverts shared through VOICE and I’ve become a NIHR Research Champion.

How have you found contributing to panels during the pandemic?

It’s been great during lockdown using Zoom and Microsoft Teams. I feel the meetings are really effective and it’s been enormously good for my mental health.

What aspects of being a public contributor do you enjoy?

Fortunately, I have very good health, so I don’t often qualify as a patient to take part in the research project. But I feel that there is a definite place for a public contributor who can’t talk about the illness. I really enjoy being made to think up questions that the researchers haven’t thought of. Sometimes we’re presented with studies, which expect people like nurses and pharmacists to take on extra roles. And I may ask a question like, ‘is it going to be written into their contract? Or are we relying on them having time on a particular day?’ I think if researchers are going for funding, they’ve really got to look at all these details. In my younger days, I did a degree at Durham in sociology, and I did a few social research methods courses. I’ve found that I’m calling on that knowledge and those skills now. I just love being able to look back to how I was educated and to find that so many years later it’s useful.

What have been the challenges?

Sometimes meetings clash, and I must choose between them, but I think this is being sorted now. Also, when I think a proposed study is unworkable, as it’s been presented to me, it’s a challenge to comment and get that over, but also be supportive and positive and constructive. Because it’s no good bursting someone’s bubble. We’ve also had several research projects where a commercial company is behind it, and I find the use of public money to support them a bit of a challenge.

How could the MIC insight panel be improved?

Calling the MIC something clearer, would be helpful! It’s hard to explain it to someone else if you can’t remember what it stands for. Since lockdown started, the RDS consumer panel has held online coffee sessions. It has cemented relationships and helped to overcome the loss of face-to-face meetings. So, I just wonder if there is any mileage in doing something like that. Maybe once a fortnight, for half an hour, and people could join socially and just get to know each other a bit more.

Why should members of the public get involved in research?

I think public involvement can help to make the research more acceptable to people, keep the research grounded and avoids wasting money. It also provides an opportunity to learn and to contribute knowledge and general life experience. On a personal level, I think it supports good mental health. We do get appreciated and feel that we’re doing something useful. I think we ask researchers important questions that can guide them, especially when they are at an early stage of their career.

Why should researchers involve the public in their research?

We can help researchers to think through ethical issues of how they’re going to go about something and how they’re going to present it. We can also help researchers to think about practical issues. Researchers often say ‘which way should we do it and how should we do it?’ And I answer, if possible, give the patients a choice. Ask them what they would prefer and what would enable them to contribute most effectively. So, I think the public can bring these ethical and practical issues to the fore.

What advice would you give to someone who is new to getting involved in research as a public contributor?

I’d say if you’re interested, try it. It’s not a life sentence! Don’t look for reasons why you shouldn’t do it. I’d also say, use your experience of a medical condition to inform your comments as it could be useful background. But don’t take over a review with your story and keep your comments objective.

How might you encourage someone to get involved in research?

I would emphasise that it’s a way to help other people. Current and future patients might benefit which could include you! It is worthwhile bringing up any comment you may have because it does help researchers to refine what they think. You do learn, get better and get more confident about what you say. Your skills also increase as time goes on. If any training is available, it’s a good idea to take that up because that can also help. I’ve found all the staff that I’ve worked with immensely helpful. Everybody, throughout all my involvement has been very responsive, and willing to answer questions, and willing to help out. They’re a great, lovely, lovely family. A lovely team!

Outside of being a public contributor what else are you looking forward to over the next few months?

Well, practically, I’d like to stay COVID free so that I could go on a five-day holiday to St. Boswells and Melrose, in the Scottish Borders, with my adult daughter in mid-June. We’ve got a two-bedroom wood cabin in the country with a hot tub. Fingers crossed!