All treatments have at some time been the subject of research.
As research has become more organised the rate of innovation and
complexity has also increased. In our modern health service each
potential new treatment, diagnostic aid, or service development is
tested before its widespread adoption. Every year thousands of
people agree to take part in research studies, contributing to
these advances in healthcare.
Whilst under our care y
ou may be invited to take
part in some research. For example, when undergoing a routine
procedure you may be asked to provide extra tissue or blood samples
for use in research. Alternatively, you may be asked to take part
in a study that compares one treatment with another to see which
one works best, or you may be asked to complete a questionnaire
about your illness or your opinion on how care should be
provided.
If you are invited to take part in some research you will
usually be given an information sheet explaining the following:
- What the research is.
- Why it is needed.
- What will be expected of you if you take part.
- The potential risks and benefits to you.
- Compensation arrangements in the event of an injury related to
the research.
- Expected expenses and re-imbursement.
- How your identity will be protected.
- How information about you will be kept anonymous.
- Who will have access to the information collected.
You should ask as many questions as you want and talk about the
research with family and friends before deciding whether to
take part. If you decide to take part in a research project you
will usually be asked to sign a consent form to say that you are
happy to be involved.
Very occasionally a research study using existing medical
information is planned. In such situations it may not be feasible
to seek consent to use that information e.g. older information.
In these cases the research will only be allowed to
happen if the study has been approved by an ethics committee and/or
the National
Information Governance Board and:
- it is clearly in the public interest that the research is
done.
- the information will not be used to make any decisions
regarding an individual.
- there are no practical alternatives.
Information analysed as part of the research is usually
anonymised so that no one can identify an individual from the
results. Exceptions to this are only allowed in very special
circumstances, or if your permission has been given.
Members of the public who act as partners in the research
process can bring a fresh point of view. In some instances members
of the public have identified areas of research that have not been
thought about by those 'inside' the research process and have also
identified which areas are most important to the people who will
benefit from the research. For example, service users may have a
different view of what outcomes are more important to them than a
research professional designing a project.
Remember:
- You do not have to take part in any research. If you decide not
to take part, it will not affect the rest of your care. If you
agree to take part and then change your mind, you are free to do so
at any time.
- For more information on getting involved in research visit the
INVOLVE website or the People in
Research site.
