What is the Primary Care Research Network East of England
The mission of the National Institute for Health Research (NIHR), the research arm of the NHS, is to maintain 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.
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 Comprehensive Local Research Networks (CLRN) to provide a wide range of support to the local research community. Our Practice participates in research activity and works closely with the Primary Care Research Network East of England, creating more opportunities for more patients to be involved in research should they wish.
By building on and extending partnerships, with university academics and the NHS, research collaboration across the East of England is further strengthened.
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|
Practice involvement in research - Why support research
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.
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|
|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|
Patients who express an interest in finding out more about a study will be asked for their permission to share their name and contact details with the study team. Some studies require direct contact between participants and the team, others involve contact through a member of practice staff or with a Primary Care Research Network research nurse.
|Participation in research is entirely voluntary and you have the right to say ‘No’. Nobody will put pressure on you to take part in research if you do not wish to. You do not have to give us a reason if you decide not to take part|
|Your care and your relationship with your doctor or nurse will not be affected in any way if you decide not to take part in a research study|
|You will always receive clear information about what taking part in a research study would involve. The practice will usually provide you with a patient information sheet; then, if you agree to take part, the study team will explain the study to you in more detail and you will have the opportunity to ask questions about it|
|Nobody from outside this practice will be given your contact details or have access to your medical records without your prior consent. If you do agree to take part in a study, you will be asked to sign a consent form – this will clearly state which parts of your notes (if any) may be looked at for the purposes of the research|
|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.|
Patient and Public Involvement (PPI) in Research - Information about how patients and members of the public can be involved in helping to influence the shape of research
Increasingly patients, carers and members of the public are contributing their perspectives to the way clinical research is designed, commissioned, managed and supported. Active involvement in clinical research is very different from being a participant in a study.
Members of your Practice Patient Group or others may be interested in how to get more involved.
|Public and Patients - Taking part in research and shaping research - NHS|
|Public and Patient Involvement in Research - Norfolk and Suffolk - NNUH|
European Patient Ambassador Programme (EPAP)
EPAP has been developed to help patients and carers across Europe understand how healthcare research and guidelines work, how to get involved and engage in advocacy and media activities at any level.
Research and patient experience short films - 4 useful resources for patients about taking part in a clinical study – being a research participant
Many patients voluntarily take part in research as ‘participants’ in clinical trials or other well designed studies. These trials aim to test how good beneficial treatments might be for people.
|NIHR Resources - patients speak about their experiences of being a participant in research.
A number of short films can be found on the NIHR website. The video provides a personal insight into primary care research from the perspective of both the researcher and participant.
An award winning charity website allowing patients and the public to share experiences of health and illness and taking part in research studies.
Comprehensive information about research for patients and the public
|Clinical trial participants: guinea pigs or informed volunteers?
The article, authored by a Guardian journalist, uses the patient’s perspective to address some of the common myths and misunderstandings about clinical research. It explains how volunteers involved in clinical trials are not human guinea pigs, but patients taking an active role in their healthcare, aiming to improve the quality of life for others with similar health conditions.
Current and completed studies at the practice
|The Norfolk Diabetes Prevention Study|
|Living with Breathlessness|
|GP Decision making study|