“No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost effective”
Professor Dame Sally Davies, Chief Medical Officer for England, Director General of Research and Development, Chief Scientific Advisor for the Department of Health and NHS
Help us make sure that clinical research is focused on the needs of patients, carers and the public!
The vision of the National Institute for Health Research (NIHR) is that there should be “…a health research system in which the NHS supports outstanding individuals, working in world class facilities, conducting leading edge research focused on the needs of patients and the public.”
County Durham and Tees Valley Comprehensive Local Research Network (CDTV CLRN) holds a portfolio of clinical research studies. It supports the development and conduct of these studies, including the active involvement of patients, carers and members of the public.
CDTV CLRN is committed to the continued development and support of patient and public involvement within its portfolio of clinical research, as well as the further development of patient and public involvement within CDTV CLRN itself.
CDTV CLRN is part of the NIHR Clinical Research Network (CRN). Its aim, in line with that of CRN, is to make sure that patients, carers and members of the public are at the centre of everything it does. For more information about PPI within the CRN, please see the network’s Patient and Public page.
There are various ways that CDTV CLRN supports the development and conduct of research studies. These include supporting researchers to develop and set up their study, finding people to take part in research and supporting researchers to carry out the research. More detailed information about the type of support offered to researchers can be found on the Researchers page of the CRN website.
Patients and public can get involved in research:
- As patients/participants voluntarily taking part in clinical or other well designed studies. If you would like to take part in a clinical trial or research study, please talk to your clinician or care team about current opportunities to do so. If you do not have a clinician or care team, please contact Andrew Robinson, our Patient and Public Involvement Officer, for more information.
- As patients and public members working with researcher professionals and clinicians (e.g. doctors, nurses) and getting actively involved in the different stages of research and related activities
It is important that patients, carers and members of the public are involved in the development of clinical research at the earliest opportunity. This helps make sure that the research question is relevant to the needs and priorities of the people that the research aims to benefit. Ultimately, this helps to develop the best possible research outcomes that meet people’s needs and improve their quality of life.
Involving people in the design and development of research also ensures, for example, that people who are invited to be participants in a research study get all the information they need, written in language that they understand. Involving people in thinking about how the research will be carried out also makes sure that the research is not conducted in a way that makes it difficult for people to take part or excludes them completely.
CDTV CLRN is working in partnership with NIHR Research Design Service North East (RDS NE) to raise awareness of PPI and promote early involvement of patients, carers and members of the public in the development of research ideas, proposals and funding applications.
This partnership will also help to make sure that people are involved throughout the research process, from the development of research ideas, proposals and funding applications, through to the recruitment of participants in the research and the conduct and management of the research itself. For more information about patient and public involvement in research design, please see the RDS NE Patient and Public Involvement page.
If you would like to get involved in clinical research supported by CDTV CLRN, there are various ways you can do this. Before you decide if it’s for you, we’ve thought about some of the questions you may have, and have tried to answer these below.
If you need any further information or advice about patient and public involvement, or would like to know more about current involvement opportunities, please contact Andrew Robinson, our Patient and Public Involvement Officer.
We’ve tried to answer the following questions using plain English and without abbreviations. However, if you would like an explanation of any of the terms used, there is an INVOLVE Jargon Buster that explains many of the terms used in research.
What is clinical research?
Clinical research helps gain a better understanding of how to diagnose, treat, cure or prevent health problems. Some types of clinical research are based on examining and observing people with different conditions, and sometimes comparing them with healthy people. Other studies may use human samples (blood, tissue and cells) or other existing medical information, or may test medical technologies such as using X-rays.
What is patient and public involvement (PPI)?
CDTV CLRN advocates “active” patient and public involvement. This means that patients and members of the public actively work in partnership with researchers to develop research ideas and carry out research.
For example, you could be involved in recruiting participants to a research study, sit as a lay member on a research steering group or even carry out parts of the research with other members of the research team.
Active patient and public involvement is all about research that is done with or by patients and members of the public, rather than research that is done to or for them. We want patients and members of the public to feel like valued members of the research team, not just somebody there to “tick the PPI box.”
What difference will my involvement make?
Your involvement could make a big difference. Ultimately you’ll be helping to make sure clinical research gives the best possible outcomes. In this way you’ll be playing a part in the development of new ways to diagnose and treat health problems, and helping to improve the quality of life of others in the future.
Will I get paid?
You should always be paid travelling and other reasonable expenses related to your involvement. In some cases, where appropriate and depending on the level and type of involvement, patients and members of the public may also be paid for their time, skills and expertise. If you’re on benefits and are worried that getting involved could affect these, we will try and help make sure you get the right information to answer your question.
How do I find out more?
If you would like more information, or to find out about involvement opportunities, please contact Andrew Robinson, our Patient and Public Involvement Officer.
For access to other websites and useful publications about patient and public involvement, please click on the links in the box to the right of this page.
