What is clinical research?

Research is part of the core work of the NHS and hospices. It helps us to develop knowledge about questions that are relevant to patients, like which treatments are best and what patients prefer.  Research helps healthcare professionals know which are the best treatments to give to patients. Research is important even for patients who are becoming less well, because we need to make sure that we are giving them the best possible care. Research is diverse. It may involve testing a new medication against placebo, but it may also involve asking a patient or family member about their experiences of care.

Research at the hospice

Here at Birmingham St Mary’s Hospice, we will have different research studies open at any time.  Some of these will involve patients or carers, others will involve staff members or volunteers. These projects will range from small scale local research to larger national or international clinical trials. We are often looking for willing participants, so if you would like to be involved in research, ask your doctor or nurse from the hospice and they will find out whether there are any projects you are eligible for involvement in.

What does taking part in research involve?

This will depend on the research study and will be explained to you in detail if you would like more information about taking part. Examples include talking to a researcher, completing a questionnaire, or taking a new medication. You might be asked about topics like your symptoms, or about your preferences for care and support.  You may choose to have a relative or friend with you when you meet a researcher or take part in a project. The research might happen when you are at home, visiting the day hospice or on the in-patient unit, depending on which study you participate in. The amount of time you will need to give will vary depending on the study you are involved in.

Your decision about whether or not to take part or not will never affect the standard of care you are given.

What benefits are there to taking part in research?

Volunteers who take part in research play a crucial role in improving the management of thousands of other patients. People who take part in studies often feel that they are more involved in their own health care. Often patients tell us that they feel a real sense of achievement from taking part, and the research helps them leave a lasting legacy for health care. There are not normally financial benefits to taking part in research, but some studies can cover your expenses or researchers can come to you if travel is difficult.

Is my information held securely?

Your information is held securely at all times. We will not share your details with any researchers outside your care giving team without your express permission. Our researchers work within confidentiality guidelines.

If I’m contacted about research, what will happen?

If a researcher contacts you, they will give you full details about the researcher project. The researcher must make sure that you are fully informed about what the study involves, including any risks, before asking you if you want to be involved. Most research projects include written information for you to review before coming to a decision. This information may include the aims of the research, how the research will take place and your role, how you have been identified as a potential person to be involved in the study and contact details of the research team.

Do I have to take part?

It is entirely up to you whether you take part in clinical research. If you decide not to be involved, this will not affect your care in any way. You do not have to give a reason for your decision.

What happens if I agree to take part?

If you agree to take part, the researcher will ask you questions to make sure it is appropriate and safe for you to be involved. If you are eligible, and decide to take part, the researcher will ask you to complete a consent form. Sometimes you may not be eligible to take part in a research study, even if you would like to.

What happens if I change my mind?

If you do decide to take part, but change your mind, you can withdraw at any time. You do not have to give a reason for your decision.

How do I know if the research is ethical?

Every research study in the UK involving patients must be approved by a research ethics committee. The hospice research steering group also checks all research which is conducted on hospice staff and patients to make sure that it is performed correctly, is safe and is helpful.

For further information, here is our Research at Birmingham St Mary's Hospice leaflet.