Clinical Research

York Street Medical Practice actively supports clinical research into new areas of medicine, which will hopefully be of benefit to all. We are part of a network of reasearch practices under the banner of 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

Why we 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.

How can I get involved?

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

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.

Research

There may be occasions where authorised research facilities would like you to take part in research. Your contact details may be used to invite you to receive further

Clinical Practice Research Datalink (CPRD) collects de-identified patient data from a network of GP practices across the UK. Primary care data are linked to a range of other health related data to provide a longitudinal, representative UK population health dataset.  You can opt out of your information being used for research purposes at any time (see below), full details can be found here: –

https://cprd.com/transparency-information

The legal bases for processing this information

CPRD do not hold or process personal data on patients; however, NHS Digital (formally the Health and Social Care Centre) may process ‘personal data’ for us as an accredited ‘safe haven’ or ‘trusted third-party’ within the NHS when linking GP data with data from other sources. The legal bases for processing this data are:

• Medicines and medical device monitoring: Article 6(e) and Article 9(2)(i) – public interest in the area of public health
• Medical research and statistics: Article 6(e) and Article 9(2)(j) – public interest and scientific research purposes

Any data CPRD hold or pass on to bona fide researchers, except for clinical research studies, will have been anonymised in accordance with the Information Commissioner’s Office Anonymisation Code of Practice. We will hold data indefinitely for the benefit of future research, but studies will normally only hold the data we release to them for twelve months.