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Patients, Carers and the Public

Why is patient and public involvement in research important? 

Patients, carers, and the public are essential to our work. They support us by:

  • Working in partnership with researchers and health and care professionals to improve the quality and relevance of our research
  • Making sure research is acceptable and will benefit others
  • Letting us know what it was like to be involved in research so we can continue to improve participant experience 

Involving patients, carers and members of the public in our work means that we can deliver high quality research that is relevant to the health and social care needs of our diverse nation.

We develop a plan which sets out how we intend to embed patient and public involvement and engagement throughout the work of the network. Co-produced with our public contributors, please find the summary version below. 

For more information about research and how you can get involved locally take a look at the opportunities below.

Be Part of Research

Be Part of Research is an online service managed by the National Institute of Health and Care Research (NIHR) that helps members of the public understand what research is, what happens when you decide to take part and the importance of getting involved. 

The site helps people to discover what health and social care research is currently happening across the UK and search for studies in their local area. Once you’ve found a study taking place near you, you can see all the details including who to contact and how to take part.

Be Part of Research supports the NIHR aim to help people make informed choices about taking part in research and helps make sure that everyone has the chance to get involved, if they want to.

Find out more about some of the research studies taking place across the Wessex region, which covers Dorset, Hampshire, South Wiltshire and the Isle of Wight: 

If you'd like to find out more about what research is being delivered across the UK and ways to get involved, you can sign up to receive our newsletter for patients, carers and members of the public.  

Participant stories

In 2022/23, more than 39,000 participants joined research studies across the Wessex region. Take a look at our case studies to hear from some of those who have taken part in research and find out why they're encouraging more people to get involved. 

If you have taken part in research and would like to share your experience with us to help promote the benefits of health and care research to others, please get in touch with our communications and engagement team on comms.crnwessex@nihr.ac.uk

 

Research Champions

Research Champions are patients, carers, members of the public, people who have taken part in a research study before, as well as those who haven’t. Something that all Research Champions have in common is that they are passionate about getting more people involved in research so that we can develop better care and treatment for everyone.

Research Champions volunteer their time to help spread the word about health and care research to patients and the public, especially those groups who are currently less likely to take part in research.

They also help researchers and health and care staff to better understand and improve the experiences of those who take part in research. In the Wessex region, Research Champions are also known as Patient Research Ambassadors (PRAs) and have an active role in helping us to deliver high quality health and social care research.

Some of the activities that Research Champions can be involved with include: 

  • Organising and attending local events
  • Speaking with local patient and community groups 
  • Supporting local campaigns and other activities to raise awareness of health and care research

We're also encouraging our Research Champions to take on some of these challenges - Research Champion Challenges 2024

To find out more about becoming a Research Champion or other ways to get involved locally, please get in touch using the contact details below:

Zoe Sheppard, Patient and Public Involvement and Engagement Manager 

Email: zoe.sheppard@nihr.ac.uk

Participant in Research Experience Survey

Participant experience is a key part of research delivery. By understanding the experiences of those who take part in health and care research, we can promote best practice and take steps to improve the research process for everyone involved. 

Every year, we ask hundreds of people who have taken part in health and care research in the Wessex region to provide feedback on their experience using our Participant in Research Experience Survey (PRES).  The results are shared nationally, alongside those from other regions, to give us a picture of participant experience across England.

To find out more about our survey and how you can get involved, please get in touch using the details below:

Zoe Sheppard, Patient and Public Involvement and Engagement Manager

Email: zoe.sheppard@nihr.ac.uk

Join Dementia Research

Dementia affects more that 850,000 people in the UK. Research offers us all hope. Only through research can we understand what causes dementia and develop effective treatments which can improve the care of those living with dementia. For research to make progress, we need more people with and without dementia to take part in studies. 

Join Dementia Research is a service developed by the NIHR in partnership with Alzheimer Scotland, Alzheimer's Research UK and Alzheimer's Society, which allows people to register their interest in participating in dementia research.

When you sign up to Join Dementia Research, the information you provide is used to match you to studies you may be able to take part in, both online, nationally and in your local area. 

You can review your study matches once you register and then it’s your decision whether to take part. There's no obligation to take part in any study, but by registering, you’ll find out when new opportunities become available.

By taking part in dementia research,  you can make a real difference to the future of dementia care, diagnosis and treatment.

You can find out more about the service by visiting joindementiaresearch.nihr.ac.uk

Communities under-served by research

We know that research doesn't always take place where disease burden is highest. In some areas there may be high case numbers of a specific condition and few research studies available for people to take part in.

It is important that health and social care research enables opportunities for participation in the regions and communities with the greatest needs. That includes not only cities but also the coastal towns, rural and semi-rural areas where many older people live.

By including more under-served groups in research, we can ensure that research meets the needs of the whole population.

Here in Wessex we have a small grants scheme programme that awards funding towards projects to help make health and care research more inclusive.

The 2022/2023 funded projects were shared and celebrated at a Showcase Event in November 2023. Read more here and view the illustration (by Poppy Ash) that creatively captured the day.