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.