Patient and Public Involvement
(PPI)
What does ‘patient and public involvement in clinical
research’ mean?
This page offers some basic information in answer to the
questions:
If you would like any
more
information there are links to other web sites that
will provide further guidance and resources.
If you are a patient or a member of the public and you
want to get involved
there are a growing number of research organisations that are
looking for people to get involved in their work, including the
UKCRC.
If you are interested to know more about what the UKCRC is
doing you can look at our
current projects.
Who are ‘patients and the
public’?
The UKCRC talks about involving ‘patients and the
public’. Other terms are sometimes used to describe people
who get involved in research, such as ‘consumers’, ‘service
users’ and ‘lay people’. It is not that one term is right and
others are wrong but different groups and individuals may choose to
identify themselves in different ways.
By ‘patients and the public’ we include the following:
- Patients
- Carers
- Family members/friends of those involved in clinical
research
- Members of the public who may be targeted by clinical and
health research programmes
- Organisations that represent patients’ and the public’s
views
- Individuals/groups that are affected by health or clinical
research issues.
What is
involvement?
For many people involvement in research means taking part in a
research study. For example, this could be by being one of a
group of people who are testing a new medicine or by answering
questions about your medical history or your life style.
However, there are other ways in which patients and the public
can get actively involved in the research process itself, such as
involvement in:
- Setting the research agenda
- Making decisions about research funding
- Carrying out research
- Analysing research data or reporting on research findings
- Communicating research findings and getting them into
practice.
This is the type of activity we mean when we talk about
‘patient and public involvement in research’.
What is clinical
research?
Clinical research helps us understand how to diagnose, treat,
cure or prevent disease. It focuses on people, and many
clinical research studies, such as clinical trials, directly
involve patients to test medicines or medical treatments.
This type of research is based on examining and observing
people with different conditions, and sometimes comparing them with
healthy people.
Other clinical studies may not involve patients, and instead
use human samples (blood, tissue and cells). Or they might carry
out tests such as X-rays, or use existing information.
Why is patient and public
involvement in clinical research important?
There are many potential benefits to involving patients and
the public in clinical research:
- People who use research-based/medical health services are able
to offer different perspectives
- These differing perspectives can help to ensure the
prioritisation of research issues important to them and therefore
to health care services as a whole
- This in turn can help to ensure that money and resources are
not wasted on research that has little or no relevance
- Once specific research issues have been prioritised, patient
and public involvement can assist in the identification of more
relevant outcome measures, rather than the use of those considered
important by healthcare professionals
- Effective patient and public involvement can enthuse those
involved to assist with the recruitment of their peers to
participate in research, including those who are often
marginalised
- Similarly, enthusiastic involvement can ensure effective
dissemination of research results to a wider audience of relevant
patient and public organisations
- The promotion of successful research outcomes can in turn help
to ensure that changes are implemented, benefiting all
involved