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Health and social care research simply couldn’t happen without people volunteering their time and commitment to either be part of a study or promote other opportunities to be involved with research.
38, 599 people took part in research studies within the NHS across Kent, Surrey and Sussex in 2018/19. Research is being carried out in all of our NHS Trusts across the region and at an increasing number of GP surgeries too. This means patients are taking part in research somewhere near you!
People are also involved and engaged with research in a variety of ways, being involved in research doesn't always mean that you need to take part in a clinical trial or study.
When we talk about ‘involvement’ we mean getting actively involved in the research process itself rather than being the participants or subjects of the research.
We need a range of perspectives to ensure research in the NHS and wider health and social care settings is as effective and as relevant for people as possible.
By sharing your knowledge and experience you can make a real difference and help to change people's lives. One of the strongest motives people give for getting involved in research is to work with researchers to help bring about improvements to health and to improve existing services and treatments.
There is an important distinction to be made between the perspective of patients, carers and service-users and those of people who have a professional role (such as doctors, dentists, physiotherapists, occupational therapists, nurses etc).
There are opportunities for patients, carers and members of the public to be involved at all stages of the research pathway/cycle.
You might decide to become involved with health research for a wide variety of reasons.
Engagement is where information and knowledge about research is provided and shared. Examples of engagement are:
Be Part of Research is is a website run by the National Institute of Health Research (NIHR) and helps people find and contact research studies taking place near to where they live and from across the UK. There are studies for people living with a condition as well as those who may be healthy.
Health and care professionals can use Be Part of Research to support their patients, clients and service users.
Visit the Be Part of Research website to find a research study that you can take part in www.bepartofresearch.nihr.ac.uk
10 February 2020
Brenda Balcombe, 64 from Chatham in Kent has taken part in rheumatoid arthritis research at Maidstone Hospital.
30 January 2020
Eight years ago Gill Gladman signed up to a research project called Brains for Dementia Research (BDR) where people with a diagnosis of dementia, as well as healthy volunteers like Gill, pledge to donate their brain after they die.
19 December 2019
Fiona McGhee from Lewes in East Sussex recognises the importance of dementia research and encourages people with dementia, and their carers, to take part.
12 December 2019
Angie Culham, 55 from Durrington, in West Sussex has volunteered for various mental health studies run by Sussex Partnership Foundation Trust and for the past year she has taken part in a study which looks at a digital therapy for paranoia.
12 December 2019
Malcolm Loftus, 60, from Redhill, Surrey has taken part in a diabetes clinical trial at the Earlswood Centre, part of Surrey and Sussex Healthcare NHS Trust.
We have an active community of Research Champions across the region. Our Research Champions are volunteers who are enthusiastic about health research. They share their experiences of taking part in research with members of the public and help us to promote other ways people can be involved.
What you contribute as a Research Champion will be shaped around your interests, skills and time. Some Research Champions commit to a weekly activity while others volunteer when opportunities arise. It’s all about sharing your experience of being part of research, which you could do through activities like:
Research Champions are hosted by an individual NHS organisation, typically a hospital. These organisations will also support their
Research Champions by providing training and mentoring.
If you are interested in becoming a Research Champion or finding out more, then get in touch with us at crnkentsurreysussex@nihr.ac.uk.
Read why patients and members of the public from across Kent, Surrey and Sussex have become Research Champions.
Gillian is a retired GP. She thinks that lay people have such a lot to offer, and that research evidence is crucial for all aspects of patient care, and for constant opportunities to improve and develop. Gillian's story.
Sue's background is in community nursing and she has also been a patient cared for by the NHS herself. Sue appreciates how much research has impacted both her nursing practice and the treatment she received. Sue's story.
My name is Kevin Jasper and I live in Rochester, Kent. I’m a former English teacher and I am involved in diabetes research at Medway Community Healthcare (MCH). I first became involved with health research when I signed up to take part in the Dwell Programme research project (DWELL - Diabetes and WELLbeing) (link opens in a new window)
The Dwell programme gives people with Type 2 diabetes a different way of looking at their condition and the way they manage it. The programme takes place over 12 sessions and gives people access to tailored support.
I have also become involved with a research project looking at doctor’s surgeries and how they can be managed better. The study is entitled GP Teams - How general practice team composition and climate relate to quality, effectiveness and human resource costs: a mixed methods study in England. The study is run by the University of Surrey and we meet in London four times a year. Recently I have done some literature reviews and put my remarks into the Resolve database.
I became a Patient Research Ambassador because of the Dwell Programme. Through the programme I became interested in research and what I can do for research. One of the reasons people volunteer is to give something back.
Research as a concept has fired my imagination, the team at MCH are very proactive and we do not miss an opportunity to promote research or the Dwell programme. We have taken some space in local shopping centres and handed out leaflets. People came up to us and we were able to talk to them about diabetes research, and sign them up to the Dwell programme. We started a craft club for people who have been on the Dwell program and it has turned into a support group where we talk about diabetes.
I’ve been to Ashford Hospital for Patient Research Ambassador meetings. It has been great to speak with like-minded people and see how other ambassadors approach their roles. I have also been to Wisdom Hospice to speak to some of their professional leads about their research ideas, specifically issues around saliva management for patients with motor neurone disease. I also spoke to Principal Investigators for studies in palliative settings looking at patients perceptions about use of alcohol as coping mechanism for cancer suffers and studies looking for better treatment and management of medication for patients using opioids to avoid constipation.
Being involved with the Dwell programme and the research team at MCH has given me knowledge about diabetes and research which adds to the roundness of the conversations I have with people about their condition. It has led me to ask questions of every doctor I come across and I now watch almost every medical program on TV. I have nothing but good to say about MCH and the support we get through research.
Is there anything else you would like to say about being a Patient Research Ambassador, including to others considering volunteering in this role?
More people should become involved with research, even if it is just going online to see what research projects are out there. Open your mind up to the issues people have with their health and get involved. In every talk I give, I always end up by saying ‘today’s research is tomorrow's treatment’. It is a phrase that hits home. Research is a beautiful thing and we need everyone to get on board.
We have launched a new Patient Research Ambassador/Research Champion Impact Award. This award recognises the contribution that Patient Research Ambassadors (PRAs) and Research Champions (RCs) make to research across Kent, Surrey and Sussex. The award also recognises the importance of the support and encouragement provided to PRA and RCs by our partner organisations on a day to day basis.
There are two awards:
An individual impact award
A team achievement award
There will be a first prize of £500 and two runner up prizes of £250. The impact award prize money is intended to be invested in projects identified, and co-designed by the Trust and the PRA(s)/RC(s).
The deadline for entries is 28 February 2020.
Email crnkentsurreysussex@nihr.ac.uk for an entry form.
Every year, we ask people from across Kent, Surrey and Sussex who volunteered for health research to feedback on their experience so we can find out what works and how we can make improvements.
If you live in Kent, Surrey and Sussex and have taken part in a research study please complete a Participant in Research Experience Survey online or email crnkentsurreysussex@nihr.ac.uk for a form.
"I was made to feel special and that my opinion counted and I could make a difference."
- research participant 2019/20
Join Dementia Research is a national service that makes it easy for anyone to take part in vital dementia research studies. People with dementia or memory problems, their carers and anyone who is interested can sign up.
Only through research will we find new and better ways to prevent, treat, care for and one day beat dementia. There are lots of types of research. From testing new
treatments, to surveys aiming to improve the quality of life for people with dementia and their carers.
Simply register your details and a researcher will be in touch when an appropriate study becomes available. You can decide whether to take part in individual studies, with no obligation.