What is the Primary Care Research Network East of England?

The NIHR is funded by the Department of Health.

The Primary Care Research Network East of England (PCRN EoE) is one of a family of NIHR national research networks working together with the Primary Care Research Network East of England, creating more opportunities for more patients to be involved in research should they wish.

The PCRN EoE also helps our practice by supporting us to recruit and take part in clinical studies through their locally based research nurses and network coordinators

What is Primary Care Research?

People use research to try and find the causes of diseases and to find better treatments and services for those diseases and improve patient care.

Research is presented in different formats:

• Completing a questionnaire
• Requesting the use of your anonymised data
• Taking part in an interview
• Testing new treatments, therapies or devices
• Experiencing new combinations of treatments.

All NHS organisations are expected to participate and support health and care research.

Conducting high-quality clinical research helps us to keep improving NHS care by finding out which treatments work best.

If you are asked about taking part in research, usually someone in the care team looking after you will contact you. People in your care team may look at your health records to check whether you are suitable to take part in a research study, before asking you whether you are interested or sending you a letter on behalf of the researcher.

Research studies help to answer specific questions about health and health care.  For example:

• Whether new treatments or ways of organising services are effective (do they work?)
• Whether those treatments or services are cost-effective (do they give value for money?)
• How different health problems develop and progress over time – to help gain a better understanding of that health problem
• The views of patients and health professionals about a particular treatment, intervention or service and how they might be improved

The results of research studies can be of interest to patients and useful to health professionals and managers in the NHS in helping to decide what treatments and services to provide in future. For more information, please see here.

Patient participation and how to take part in research

There are different ways that patients can become involved in studies our practice is participating in.

• A doctor or nurse may talk to you about the study and ask whether you would consider taking part or
• You will be sent information through the post if we feel that you might be a suitable participant
• You may read information on the website about a current study and wish to take part by contacting the practice

You will not be asked to take part in a large number of studies.  Most researchers are very specific about the criteria that people need to meet in order to enter their study.  Usually this means that only a relatively small number of patients at the practice will be suitable for any one study.

Current studies at the practice:

• Panoramic Recruitment: The purpose of this clinical study is to find new treatments that help those suffering with COVID-19 at home and in the community get better quicker and without needing to be treated in hospital. Most people with COVID-19 are treated in the community and so we need to find treatments that are suitable and effective for use early on in the illness.
• REsTORE : development of an intervention to increase utilisation of pulmonary rehabilitation in primary care).
• IPCAS : Improving Primary Care After Stroke: A randomised controlled study trial to evaluate a new model of care for stroke survivors living in the community.
• CANRISK : Explore the usability/acceptability of the Canrisk cancer diagnosing tool from the HCP perspective, and explore clinical attitudes towards this.
• NOAR : Norfolk Arthritis Register – monitor the incidence of inflammatory polyarthritis (PA) and rheumatoid arthritis (RA).
• THE DEVELOPMENT OF VISUAL WORKING MEMORY STUDY: Probing the Neural Basis of Visual Working Memory in Early Development (UEA).
• EPIC : The European Prospective Investigation of Cancer.
• BARRETT’S OESOPHAGUS TRIAL 3 : (BEST3): Cluster randomised controlled trial comparing the Cytosponge^TM-TFF3 test with usual care to facilitate the diagnosis of oesophageal pre-cancer in primary care.
• FRESH: is an innovative programme designed to help families become more active by doing fun stuff together! Please feel free to contact form.
• Dementia Study: 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. Simply register your details and a researcher will be in touch when an appropriate study becomes available. You do not have to take part in any particular studies. It is always your choice whether or not to take part. Sign up online or call Alzheimer’s Research UK on 0300 111 5111, or the Alzheimer’s Society on 0300 222 1122.

We often have several research studies running and from time to time; we may write or phone you to ask if you are interested in being involved with a specific study.  We would also appreciate you keeping a watch on the website and/or notice boards in the surgery for studies you may wish to find out more about and/or participate in.  For some of the studies you can contact the study team directly but if you are interested you should contact your surgery initially.

How can you help?

Research cannot happen without your help. Taking part in a project may not always help you directly, but you will be helping to develop services and treatments for future generations.

If you are asked to take part in a research project, please consider getting involved.

What you will be asked to do will depend on the project; however it may involve:

• Filling in questionnaires.
• Talking to the researcher about your views.
• Letting the researcher look at your medical notes.
• Trying a new treatment or drug.

If you are asked to take part in research:

• Your care will not be affected if you decide not to take part, or if you say yes and then change your mind.
• Your doctor, nurse or researcher will explain what the project is about and what is involved in taking part. They will give you some written information about the project for you to keep.
• You will be given time to think about all the information and to ask questions. If you don’t understand anything, please ask. You should only say yes if you fully understand what will be involved and are happy with this.
• If you decide to take part you will be asked to sign a consent form and will be given a copy to keep.

Remember:

• Taking part in research is voluntary. You do not have to take part and you can change your mind at any time – you do not need to give a reason. Before a research project starts it is looked at by various organisations to make sure it is OK for you to take part. These include an NHS Research Ethics Committee and the NHS organisation responsible for your care. They make sure that any risks have been looked at, that the study is of value to patients and the NHS, and that it respects the rights, safety and wellbeing of those taking part.
• They also review projects regularly after they have started to make sure they continue to be safe.

Can you be identified?

• No researcher will be given access to your health records for research without your consent.
• Where possible all data collected from you for research purposes will be coded with a number rather than your name.
• Everyone who has access to your records, or any of your details for research, is bound by a strict code of conduct to keep your data confidential.We take research very seriously. We are committed to developing our services based on the best research evidence there is so that we can offer the best care and treatment to the people of Norfolk and Suffolk.