As a doctor and nurse active in research, we are bound by confidentiality rules just the same as our colleagues who provide NHS care. All the data we produce is anonymised. While we know who patients and their families are, to everyone else in the team who is looking at and interpreting the data, people recruited are just a barcode number. This is the case for nearly all medical research studies.
We would encourage anyone who may be interested in helping with research to start by simply asking the question. Helping is voluntary and the studies you choose to be involved with is up to you, it is always your choice. Ask questions to determine what the study is about, what is expected of you if you say yes, gather as much information as you can and ask as many questions as you need to make up your mind. You are the one in control of whether you want to take part or not. Even if you only do one study, it’is still helping.
Not all medical research is drug trials, they are just the ones grabbing the headlines. Medical research is so varied using things such as online surveys and thinking tests, to the more classical type such as donating a blood sample or having an MRI scan (magnetic resonance imaging). There is so much more than drug trials out there and you can contribute in so many ways. No one is going to pressurise you to take part.