The voice of the patient in clinical research and development is increasingly being included, from the setting of research priorities through to the dissemination of results. This marks a shift in what has historically and culturally been, until relatively recently, research “on” rather than “with” patients. Previously, researchers defined their projects according to their areas of interest, with focus on scientific relevance rather than on the patient`s perspective or the real needs of patients. The different stakeholders worked separately rather than collaboratively. The focus of clinical research has started to shift towards a patient-centred approach, aiming for the provision of the best individualised healthcare for each patient. PPI is an essential component of the c4c project as it brings the patient and public voice into clinical research.
But what is PPI in research?
PPI refers to an active partnership between patients and/or members of the public and researchers. Involvement means that patients and the public can contribute to the research process as advisors (and in several cases as co-researchers) and are considered on a par with other stakeholders.
Who are the patients and the public?
The term PPI includes a wide variety of people or collectives like patients, parents of patients, caregivers, patient representatives (patient groups or organizations), healthcare services users or even the general public.
Why is PPI important? Patients, parents/caregivers or patient representatives have first-hand experience of the illness or condition they live with. They are experts, like researchers and clinicians, and thus, they can provide insights into what it is like to live with a particular disease or health condition. These inputs can help to improve research by including patients/parents/caregivers needs, concerns and aspirations, which may be different from those considered by researchers or health professionals.
At what stage of Research can patients and public contribute?
They can be involved in all stages of the research process and their inputs may be different based on the required expertise in the disease. The areas of involvement include:
- Research priorities
- Research design and planning
- Research conduct and Operations
- Dissemination and communication activities
PPI in c4c
At c4c we encourage patients and their families to get involved in PPI activities. The active participation of children, young people and their carers is one of the key objectives of the project. If you wish (or know someone who could wish) to be part of a pool of expert patients that can participate in such activites, you can find out more by following the instructions here!