In recent years Interest has rapidly grown in patient and public involvement in research (PPI). Such involvement in health research has been advocated both on ethical grounds and that it improves the quality of research.
It is now an international movement with comparable initiatives in the US, Canada, Australia and the UK. In Europe we have the European Patients’ Academy of Therapeutic Innovation (EUPATI) which aims to increase the capacity of patient organisations to be effective advocates and advisors in medicines research.
What is PPI?
PPI can be defined as working ‘with’ rather than ‘on’ patients and members of the public. This is distinct from either disseminating information about research to the public or people participating as subjects of the research. PPI makes use of the particular expertise of people who have been recipients of health care in activities such as identifying research priorities, acting as members of project advisory or steering groups and commenting on and developing patient information leaflets.
How does PPI benefit health research?
There is a growing evidence base documenting the benefits of PPI in health research. Involving patients in activities such as project design and writing information and consent forms can improve the relevence of research to patients, improve recruitment and retention to clinical trials and increase the chances of the research being put in to practice.
PPI in antimicrobial research.
Despite the growing interest in PPI there has apparently been relatively little attention given to PPI in antimicrobial research. There may be a number of reasons for this state of affairs. One is that researchers involved in antimicrobial research may be unaware of the potential benefits of PPI. Another may be the difficulty of building up and sustaining relationships with relevent groups of patients, given the temporary nature of many microbial infections and the lack of specific patient organisations.
As part of COMBACTE-MAGNET Workpackage 6I our team, based in Bristol in the UK, have set up a patient panel of around 12 people with lived experience of serious infections requiring hospital admissions. Our aim is to provide PPI advice and support to members of the COMBACTE-MAGNET Consortium. Members of our group have been provided with training and support, so that they are in a good position to be involved constructively in the research conducted by COMBACTE-MAGNET. They can provide advice on a range of issues including writing lay summaries of research, developing trial recruitment strategies and advising on what patients may find acceptable in a trial.
Many researchers are, at first, reluctant to undertake PPI. However, those who have report that the insights gained can have an invaluable benefit for their work. It is also, from an ethical point of view, the right thing to do!
Andy Gibson – Associate Professor in Patient and Public Involvement based at the University of West England