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Patients, Carers and the Public

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  • Be Part of Research

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. 

How do I become involved in research?

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.

Why is it important for patients and the public to be involved with research?

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).

Why become involved in research?

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.

  • Share your personal knowledge and experience 
  • A chance to give something back and help influence research to benefit others
  • To learn more about your condition 
  • Help bring about improvements to health and social care services and treatments for yourself and others

Engagement with research

Engagement is where information and knowledge about research is provided and shared. Examples of engagement are:

  • attending or speaking at an open day at a research centre where members of the public are invited to find out about research
  • raising awareness of research through media such as television programmes, newspapers and social media
  • sharing the findings of a study to research participants, colleagues or members of the public

Be Part of Research 

Be Part of Research is a service that makes it easy for the public to learn about and search for research studies. Discover how research studies are designed, what happens when you decide to take part and the importance of taking part. You can:

● Use the search tool to find current research studies happening right now
● Find studies taking place near you
● Filter results easily by age, health condition etc
● Use the site on desktop or mobile
● Download, save or print the full study details so you can talk to your doctor, nurse or healthcare professional.

Once you’ve found a study, you can see all the details including who to contact and ask to take part.

Whether you have been diagnosed with a condition or not, everyone can take part in research. Find a study that’s right for you.

Research Champions

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 does being a Research Champion involve?

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:

  • Attending health awareness day events
  • Talking to friends and family about health research
  • Taking part in and organising activities to mark the annual event International Clinical Trials Day. This can sometimes include being interviewed by the media
  • Supporting local engagement teams to raise awareness of opportunities to participate in research studies

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.

Meet our Research Champions

Read why patients and members of the public from across Kent, Surrey and Sussex have become Research Champions.  

Gillian Santi, Research Champion 

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

Kevin Jasper, Research Champion

 

Please tell us a little bit about yourself and your experience of health research

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.

What motivated you to become a Patient Research Ambassador?

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.

What activities have you been involved with as a Patient Research Ambassador and what difference do you feel they make to others and to research?

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.

How has being a Patient Research Ambassador benefited you and how have you been supported?

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. 

Participant in Research Experience Survey 

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 

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.