Published: 24 November 2022
Can you introduce yourself?
Hi, I’m Una. I’ve been asked to write about being a public contributor in health and social care research. Basically, that means I get involved as a member of the public in research that is about health and care issues.
There are so many different ways to be involved as a member of the public. I’ve been doing this for nearly 20 years and have had all sorts of adventures and learnt a great deal – about research and about me!
How did you first get involved?
“When I first got involved it was completely by accident…”
When I first got involved it was completely by accident – I was an at-home mum with a toddler and wanted something that would add another dimension to my life, so I responded to an advert about helping to produce some information for new parents about the heel prick tests they do on newborns. That led to a variety of other opportunities and eventually the door to the NIHR!
Over the time I have been a public contributor I have balanced it with parenting, working and caring. It was a really useful outlet for me when I had to give up my permanent job to focus on being a carer. It allows me to make use of my skills and experience, it gives me some intellectual stimulus and can provide a distraction from the stresses that come with being a carer and trying to access services.
One of the reasons I have felt able to continue being a public contributor is because of the understanding and flexibility of the people I work with. They understand that I may have to cancel at short notice, or that we might get interrupted if I am needed.
What does a day in your life look like?
As a public contributor there is no standard day. Some days I might have multiple meetings and on others I might not have any. If I have meetings I try to avoid anything that starts too early in the day so it allows me to focus on my morning caring responsibilities.
I check my emails throughout the day and might have some reading or other work to catch up on if I don’t have any meetings. I fit those activities around the things I need to do to support the person I care for (benefits meetings, making meals, support with personal tasks etc.). Because I am involved in so many different things I find it is really important to find a way to keep track of each project as I often find myself jumping between them. My diary is therefore my best friend!
Can you tell us a bit more about joining meetings?
Before the pandemic lots of meetings used to be face to face. As a carer it gave me the chance to spend time with other adults and to spend time somewhere other than at home. However, it wasn’t always easy and often involved a lot of co-ordination and planning to make sure alternative care and support was in place. There were also never any guarantees that I would get to the meeting, so being able to cancel at the last minute was important to me.
The last couple of years have meant that pretty much everything I’m involved with is now online. That has meant I have had to learn about a whole load of meeting software! It actually makes my life much easier doing meetings virtually – as being away from home can be a bit of a challenge – but that’s not the case for everyone. For some people virtual meetings are worse. Currently my biggest issues are being ready 5 minutes before the start of a meeting so I can join on time, being able to find the correct link and not being disturbed for the duration of the meeting!
What type of input do you have as a public contributor?
How I am involved in a project impacts the level of input I might have. If I am joining a workshop or focus group I am a participant and I may be there to offer an opinion or explore an issue.
If I am a core member of the team or committee I am there as an equal with other members. I am expected to have read the documents and take a full part in the meeting. I am offered support in advance. If I need to I can ask questions or ask for pre-meetings to help me understand what the meeting or documents are about. I may also be asked to get involved in additional meetings to take forward decisions taken at the main meeting.
“How I am involved in a project impacts the level of input I might have.”
I also try to take part in studies as often as I can. It really helps to have that experience of being a participant. My preference is to take part in surveys or similar activities that I can complete at a time that works for me. I also encourage my son who is autistic to take part in research and support him to make his voice and views heard.
Can you tell us a bit more about reviewing documents for a research project?
Reviewing documents is one of my favourite activities as I can do it at a time and in a way that suits me. I can fit it around my real life! I’ll often take a quick look and scan the document first – then I’ll read it in more detail and make some notes – usually with pen and paper. My final visit is to make sense of my notes and record them in whatever way is required.
Reviewing research projects is an interesting task – sometimes I have no idea what something is about so it can take a few goes to get things straight in my head. My job is to work out whether the research is important to the communities affected, whether they have been involved in the development of the study and if they will continue to be involved whilst the work is being done.
I’m really keen on accessibility of research and have worked on projects aimed at providing plain language summaries of research. When I am reviewing documents I often comment on the language used and the way they are written. I often encourage authors to simplify the language, avoid using abbreviations, shorten sentences and break up text by using bullet points and paragraphs.
How have you found being involved in research?
For something that I found by accident, this has been an amazing journey for me. I have learnt so much and get a real kick from doing something that (hopefully) makes things better. The very reason I first got involved was to make sure new parents had better information than we did.
“For something that I found by accident this has been an amazing journey for me.”
Most of my working life has been about making the world a better place and this purpose still holds true today when I get involved in research. In addition, being involved gave me the confidence to get back to work when I was a new mum, it sustained me when I had to give up work to focus on caring and now it has shown me, once again, that I can re-join the ‘workforce’!
Why is this important to you?
I think it’s important to promote the role of public contributors as widely as possible – we need lots of different views and experiences represented in health and social care research if services, treatments and interventions are to meet the needs of our diverse population. We need to value community voices and listen to what’s important to them – one way to do that is to always make sure that relevant members of the public are part of the team for all research projects.
“We need lots of different views and experiences represented in health and social care research”
How can other people get involved?
There are lots of possible ways to get involved. For me it was by accident, but if you decide you would like to take part then here are some of the ways you might get started.
If you would like to support research by being a participant then you can find out more about the kinds of studies that are going on by visiting Be Part of Research.
If you have a particular area of research that you are interested in then you could take a first step by looking at what research has been done. You could try looking at research on a specific topic on NIHR Evidence.
If you would like to promote research locally you could become a research champion. Alternatively, you might have a specific condition you are interested in so you could check People in Research for any opportunities to get involved, or look at relevant charities to see if they do research and how they involve the public in the studies they do.