Supporting Research in Primary Care
We are a research practice and take part in the National Institute for Health Research (NIHR). The NIHR is funded by the Department of Health and is the research arm of the NHS. We are part of the Clinical Research Network (CRN) Yorkshire &v Humber and provide data for patients from a primary care perspective. The research is used to try and find the causes of diseases and to find better treatments and services for those diseases and improve patient care– in other words to try and find better ways of looking after patients and keeping people healthy.
The funding for our research activity is via the CRN so does not come out of the practice’s own budget and therefore does not affect our patients’ services.
A key requirement for anyone involved in the conduct of clinical research is Good Clinical Practice for research (GCP) training. GCP is the guideline and standard to which all NHS research is conducted.
The Affinity Care Practices are part of a network of local practices participating in research activities. The practices in the Alliance are:
- Executive Lead for Affinity Care Dr Sara Humphrey
- Thornton and Denholme – Research Lead – Dr R Stockwell
- Shipley Medical Practice – Research Lead – Dr R Dawson
- Cowgill Medical Practice – Research Lead – Dr W Tahir
- The Willows Medical Practice – Research Lead – Dr R Pountney
- North Street Surgery Research Lead – Dr Sara Humphrey
- Sunnybank Medical Centre Research Lead – Dr R Holbrough
- Haigh Hall Medical Centre Research Lead – Dr C McCormack
What is Primary Care Research?
The CRN Primary Care speciality works in collaboration with researchers and primary care practitioners such as GP’s, practice nurses, pharmacists and dentists to promote the successful delivery of research studies in the NHS. A wide range of research studies are supported which look at:
- Promoting a healthier lifestyle
- Disease diagnosis and prevention
- Management of long-term illnesses such as diabetes or hypertension
- Prevention of future ill-health
- Treating common conditions such as tonsillitis or influenza
What are the Benefits of GP practices taking part in Research?
- It offers patients access to new treatments
- It brings new dimension to practice and added skills to those involved
- It provides national gold standard training for research
- It offers mentorship and support to those involved in research within practice
How can you help and take part?
There are many various ways a patient can become involved in studies:
- A doctor or nurse may talk to you about a particular study and ask whether you would be interested in participating
- You may be sent information through the post if we feel you may be a suitable participant
- You may read information about a current study in the patient waiting room or on the surgery website and wish to take part by contacting your GP
All clinical research carried out is thoroughly checked and approved by ethical committees thus ensuring it is appropriate and safe to perform.
Your participation is entirely voluntary and can be withdrawn by yourself at any time without any explanation required.
You are under no obligation to participate in any research project.
Your care and your relationship with your doctor or nurse will not be affected in any way if you decided not to take part in a research study.
You will always receive clear information about what taking part in a research study would involve. You will have the opportunity to ask questions and obtain further details about a study.
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 study. Nobody from outside this practice will be given your contact details or have access to your medical records without your prior consent.
Current research studies the alliance are involved in include:
- Join Dementia Research
- The Care (75) Study
By visiting the National Institute for Health Research website you will find more information about research in primary care.
There is also more information about research for patients on the NHS website: www.nhs.uk/conditions/clinical-trials
We are very grateful to any of our patients that have taken part in these studies in the past and would encourage patients to become involved in the future.
“I Am Research” gives patients, the public and health and social care research professionals a chance to shout about how fantastic research is. We aim to raise awareness of the benefits of research and the positive impact it has on people’s lives. For more information please visit: www.nihr.ac.uk
Questions often asked about research
Q1 Why am I getting letters about taking part in research?
A1 Affinity Care and your practice take part in research as we feel it is the right of every patient to have access to the latest treatments and trials for treatments. Some of these treatments are only in the research phase and are not routinely available on the NHS. Taking part in research allows you access to these trials and also helps to ensure that the NHS is constantly striving to find better treatments.
Q2 Do I have to take part in research and if I don’t will it affect my care?
A2 No you do not need to take part in research and if you decide not to take part it will not affect the quality of your care or your relationship with your GP or the practice. You can opt out of any single trial and you can opt out of all research if that is best for you. If you want to opt out please let your practice know and we will ensure you are not called again. Importantly, please ensure the practice knows whether you are opting out for a single trial (you have had a letter for) or for all future research work.
Q3 Does my practice give or sell my personal data to other research companies?
A3 No – We understand that your personal data is very important and will never share this without your specific consent. We do run research studies for private research companies and we do this because they are trying to do important research that is good for patients. We do not sell or give them your data but we will run searches of patient’s notes and then we will send you a letter telling you about the research company and how to contact them, if you are interested. The companies do not know who has been sent a letter unless you decide to take part and contact them.
Q4 I have been sent a letter about a research study that says I have ‘osteoarthritis’ or other condition, I did not know I had. Why has this happened?
A4 We run computer searches of all our patients’ notes looking for ‘diagnosis codes of conditions’ in your notes which match the research we are doing. Most patients will know that they have, say diabetes or angina. On occasion they may have skin conditions or things like osteoarthritis that have been diagnosed, and diagnosis code added to their record and they may either not be aware of the medical name for the condition or think of it under another name. This happens because a diagnosis may be in the records from a hospital letter or X-ray result. An example may be dermatitis – this can be known as eczema, contact dermatitis or atophic dermatitis
Q5 I have rung my practice and the reception staff seemed to have no idea about the research invitation
A5 We run research studies centrally and send the letters out from the admin team and we try our best to ensure that all our clinical and reception staff are aware of letters and the latest trials but there is often a lot going on in the practice and so sometimes staff are not as up to date as they should be. We are improving this by putting up a notice on the research noticeboard in every practice, on the practice website and by sending out a text message before every trial directing people to this Q&A page.