St James Surgery

Research is essential in working out which treatments work best for patients and St James actively supports clinical research studies within Primary Care.

Clinical Research is a major driver of innovation and central to NHS practice for maintaining and developing high standards of patient care. Participating in Clinical research allows patients to get access to new interventions, treatments and medicines. Ultimately, investment in research means better and more cost-effective care for patients.

For information about how the NHS uses data for planning and research click https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research#top

To 'opt out' click https://your-data-matters.service.nhs.uk/

Alternatively, call*
*0300 303 5678 (Mon-Fri 9:00-17:00 excluding bank holidays).

St James Surgery is part of a network of GP practices participating in research activities under the banner of National Institute for Health and Care Research Clinical Research Network (CRN). This provides the infrastructure to allow high quality research to be set up and delivered efficiently and effectively.

The National Institute for Health Research works with researchers and primary care practitioners such as GPs, practice nurses, pharmacists and dentists to promote the successful delivery of research studies in the NHS. We support a wide range of research including studies 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.

Evidence suggests that patients who receive care in research-active institutions have better health outcomes than those who are treated in a non-research environment.

By joining the research community, we are actively helping to improve the standard of healthcare for our patients.

Research provides an opportunity for you, the patient, to better understand your health conditions as well as give something back to the NHS and wider community.

Sometimes it can provide patients with access to new treatments, as well as bringing a new dimension to practice and added skills to those involved.

Taking part in research is voluntary: you can freely accept or decline, and this will not affect the care that you receive in any way. Even if you agree to take part, you can still withdraw at any time, without having to provide justification. Withdrawing from a study will NOT affect the care we provide for you.

All research projects carried out at St James Surgery have been thoroughly checked and approved by the relevant health authorities & ethical committees ensuring it is appropriate and safe to perform. You will always receive clear information about what taking part in a research study would involve and will have the opportunity to ask questions and obtain further details about a study. All projects are fully compliant with all UK laws (incl. GDPR).

• You may receive a text message, email or a letter in the post offering you the opportunity to take part in a study (the letter will include some information about the project).
• Your doctor or nurse may also discuss research opportunities during your usual appointment.
• You may also be approached by a member of the study team in the waiting area; be assured that this person and their activity will have been approved by the practice.

What you will be asked to do as part of the research will vary from study to study. The Patient Information Sheet for each project will detail what is expected of you. The study team is also there to answer all questions you may have. Some studies can include a payment or voucher for the patient.

Things you may want to know

• 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.

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 medical notes (if any) may be looked at for the purposes of the research study. Nobody from outside your practice organisation will be given your contact details or have access to your medical records without your prior consent.

The national data opt-out was introduced on 25 May 2018, enabling patients to opt out from the use of their data for research or planning purposes, in line with the recommendations of the National Data Guardian.

Patients can view or change their national data opt-out choice at any time by using the online service at www.nhs.uk/your-nhs-data-matters or by clicking on “Your Health” in the NHS App, and selecting “Choose if data from your health records is shared for research and planning”.

Ultimately, our research helps people to access and take part in studies which could potentially make a real difference to their health conditions and quality of life. Here are a few quotes from patients who have taken part in research:

“I felt being part of the research helped my case, maybe got treatments that I would not have had otherwise”

“I do feel as though I’m contributing to the improved care for future generations”

“With the close monitoring / treatments from everyone, I now feel a lot healthier”

“The process has made me much more aware of my condition and that advice and care was immediately available”

A key requirement for anyone involved in the conduct of Clinical Research is Good Clinical Practice for Research (GCP) training. This is the international guideline and standard to which all NHS research is conducted.

Dr Mark Thomas is trained in GCP and is the research lead for Devizes PCN.

St James Surgery contributes to the Oxford Royal College of General practitioners Clinical Informatics Digital Hub (ORCHID). This means that the practice shares pseudonymised data which is used by ORCHID for the following purposes:

• Surveillance of disease, primarily infectious disease.
• Quality improvement
• Research
• Education.

For information about how the NHS uses data for planning and research click https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research#top

To 'opt out' click https://your-data-matters.service.nhs.uk/

Alternatively, call*
*0300 303 5678 (Mon-Fri 9:00-17:00 excluding bank holidays).