Patients and the Public FAQs

• What is PPI in research?

  Researchers and healthcare professionals work together with patients and the public to develop research and related activities, which can then improve healthcare services and treatments to help patients and the public.

  INVOLVE says that public involvement in research means “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. This might include offering advice and comments on research and related activities and materials. You can become involved if you are:

  • A patient
  • A carer
  • A friend or relative of a patient
  • A service user
  • A potential patient
  • A representative from an organisation
  • Somebody with an interest in sport, exercise and/or osteoarthritis
  • Somebody with an interest in research

  It is likely that we will all come into contact with health and social care services at some stage and it is important to remember that patients and the public can often give us a different view to that of the research team.

  More from INVOLVE

   
   
• Who can benefit from PPI in research?
  • Patients and the public – when they can see their views being listened to and used to improve healthcare
  • Health researchers – when they can see the quality of their research improve with input from patients and the public from the start
  • Healthcare workers – when they can see their quality of care and treatments improve with the help of patients and the public in research

   
   
• Why Involve Patients and the Public in Research?

  Through Patient and Public Involvement (PPI) real patient views can influence research.

  • PPI can help researchers to look after patients who take part in their research
  • PPI can help keep health research activity aimed at what will really be of use to patients, carers and the public
  • People who have been affected by an illness, condition or disease along with members of the public can provide a certain view, based on experience, that is outside the formal approach of the research process
  • Patients, carers and members of the public can give researchers ideas and ask questions that might have been missed by professional staff

  So, to help with the health needs of people, we invite people to become involved

   
   
• What do we mean by research?

  The word research means different things to different people, but it is really about finding out new knowledge that could lead to changes to treatments, policies or care. Research helps us understand how to prevent, diagnose, treat or control health problems. It focuses on people, and many clinical research studies, such as clinical trials, directly involve patients to test medicines or medical treatments

   
   
• Why is research important?

  Research is important because it is about our everyday health. Research happens with the help of our healthcare teams and can affect the way we are treated and cared for. Using our experiences as patients, carers, relatives and loved ones, research collects information that helps the NHS improve its services and treatments. Without this information, finding new approaches to treating illness and disease would be difficult.

  Health and social care research can help to:

  • Make sure services and treatments are relevant to patients and the public
  • Improve treatments and services
  • Get the views and opinions of patients and the public
  • Test treatments to make sure they are safe and that theywork

   

   
   
• What can I do?

  There are lots of different ways to get involved in our research. There will be different research activities that you can do and you will be able to choose what interests you. You will be able to become involved in as much or as little as you like. If you rather not travel there will be activities that you can do from home, perhaps by reading and commenting on email or postal documents. For other activities, travel might be involved as there may be regular face to face meetings

  more about getting involved from People in Research (PiR)

   

More information on how you can volunteer with the Centre for Sports, Exercise and Osteoarthritis.

Useful Links

The following websites contain useful training and guidance documents for patients and the public:

Clinical Trails Simulator (Health Education England NHS)
European Patient Ambassador Programme
European Patients' Academy on Therapeutic Innovation
Public Involvement Impact Assessment Framework
ReseArch with Patient and Public invOlvement: a RealisT evaluation - the RAPPORT study