We are keen to include patients and other members of the public in the development, design and conduct of our research activity. We call this ‘patient and public involvement (PPI)’.
Why we involve the public
Members of the public can:
- Bring knowledge and experience of a particular condition or service relevant to the research topic
- Bring views based on their experience of being a participant in research
- Bring a lay perspective about studies and their associated documents
- Help to improve the design and focus of the research
- Advise on ethical issues
- Talk to patients, the public and healthcare professionals about health and care research
We believe that this input leads to better research, clearer outcomes, and faster uptake of new evidence.
Be part of research
Be Part of Research is a free service which makes it easy to find and take part in vital health and care research across the UK. Be Part of Research is a UK wide service run by the National Institute for Health Research and helps people understand what research is and what it might mean to take part – it also shows what research is currently happening across the UK. The mission of the National Institute for Health Research is to improve the health and wealth of the nation through research. University Hospitals Sussex is an active partner of the NIHR South East Regional Research Delivery Network, giving researchers and delivery teams the practical support they need in our region and, encouraging clinical trials in the hospital.
Many of our patients take part in research studies that look to assess new treatments, devices or techniques against current standards of care – these studies identify the best ways of looking after patients and keeping people healthy.
Research involving patients requires national research ethics authorisation to ensure the rights, safety, dignity and well-being of research participants. Other regulatory bodies may also be involved in authorising studies, for example if a research study involves testing a medicine then the medicines and healthcare products regulatory agency will review and approve the research also.
If you are invited to take part in a study or trial whilst under the care of us, it is entirely up to you whether or not you would like to get involved. If you decide not to participate, your NHS treatment will not be affected and you will continue to be looked after like any other patient.
Why take part in research?
If you are involved in a research study it could help you feel more informed and in control of your healthcare. Being a participant in a clinical research study often means that you can be among the first to benefit from the very latest treatments and your health condition will be monitored more closely than normal.
Whilst not all research studies will be of ‘direct’ benefit to the participants involved in the study, research findings will be used to develop better ways to treat others with the same condition and may contribute to improving the health of society more widely. The reasons people take part vary, but people often say that taking part in a clinical trial or research study is a positive and rewarding experience. Participants involved in a study related to a medical condition they have often feel as though they are more knowledgeable and are taking a more active role in their healthcare as a result.
Research Champions
The role of the research champion is to promote health research from the patient perspective. This can involve any patient, service user, carer or other lay person who is enthusiastic about health research and willing to communicate that to other patients, healthcare professionals and the wider public. Visit our research champions page for more information.
People in research
People in research has a database of opportunities for members of the public to get involved in research. You can scroll through all the opportunities or sort your results by topic, type of involvement or location.
Healthtalk
Healthtalk has produced some insightful video clips where people talk about their reasons for getting involved, what activities and tasks are required, and the value of patient and public involvement in research.
Join Dementia research
Join Dementia research is a service created the National Institute for Health Research (NIHR) in partnership with Alzheimer Scotland, Alzheimer’s Research UK and Alzheimer’s Society. Dementia is one of the biggest challenges we face today, and that is why an online platform was created to allows volunteers (with and without dementia) to register their interest in participating in dementia research and be matched to suitable studies.
Participate in research experience survey
Participate in research experience survey is run by the NIHR Clinical Research Network (CRN) each year, and asks thousands of participants to give feedback on their experience of taking part in research, as a way of demonstrating to research participants that their contribution is valued, and to help improve the way research studies are designed and delivered.