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What does participation mean for you?

If you are asked whether you would like to participate in a clinical trial relevant to you, you will be provided with an ethically approved information sheet, which will detail what that particular study involves. A member of a research team will go through this with you to ensure that you have a thorough understanding of the study before you decide whether you would like to give your consent to participate. In most circumstances, you will have some time to think about whether this would be right for you, and it may help to discuss this with a friend or relative. The participant information sheet will have the contact details of the research team for your trial and you can raise any queries you might have with them.

The potential burdens

If you do decide to participate in research, you may be asked to be involved in tasks that are additional to standard care. These could involve completing questionnaires, donating blood samples and tissues, taking medication or visiting a clinic for extra scans or examinations.

When deciding whether a research study can be ethically approved, ethics committees evaluate if the study might present a potential burden to its participants, and whether that burden is considered acceptable in light of the benefits that could be gained from participation. Whatever the level of involvement, participation in a research study is always voluntary and participants are able to withdraw from a study at any time, without giving a reason and without affecting your normal treatment.

The potential benefits

Research within the NHS does not result in financial gain for participating patients, although expenses such as travel costs to extra clinic visits related to research are reimbursed.

The benefits that can result from participation are best expressed in our patient case studies. These provide some positive stories about research improving health problems. They also speak of gaining increased knowledge of a condition, which in an age where many of us can get swamped with information doing our own web-based research into our ailments, can give assurance to participants that they are fully informed from a reliable source.

Participation also gives an opportunity to play a part in potentially improving the treatment of the condiction being investigated for people in the future, providing patients with a degree of control over the disease affecting them.

All participants involved in NHS research are entitled to be informed of the results of the study once it has been completed.

If you wish to contribute a case study about being a participant in a clinical trial to our website, we would be grateful if you contacted us via research@uhbristol.nhs.uk

Confidentiality

Just as you can rely on confidentiality as a patient, you can also expect this as a research participant. All research conducted in the NHS requires that data is collected, stored and anonymised in accordance with the Data Protection Act 1998.