Book Description
Patient and Public Involvement (PPI) involves working in collaboration or partnership with patients, carers, families, service users, or the public, in planning, designing, managing, conducting, disseminating, and translating research. PPI in health and clinical research has increased exponentially over the last two decades. Despite this, it is not regulated, nor are there any universally agreed standards or ethics applied to PPI in research. However, health and clinical research is a heavily regulated area and is subject to a great deal of international and national legislation, policy, procedure, and guidance. Included in this is legislation and policy relating to the safe participation of those who are the subjects of research i.e. patients, carers, families, members of the public. They are also protected from harm by research governance and research ethics processes. Academic institutions, health and care systems, and research funders, across Europe and the US encourage and mandate PPI in research, and there is a significant need to educate researchers and prospective researchers across health and care in ethical, effective, and impactful PPI. Many health and care educators offer training modules or courses on how to engage and involve patients and others in the research process. That training may also include patients as educators. This places an onus on academic institutions responsible for training health professionals, and managers to provide research training and build capacity in PPI. This handbook adds to the growing literature relating to PPI in research and provides a reference point and guidance on ethical research involving PPI. It makes an important contribution to the debate about the ethical aspects of involving patients and the public as partners in the design, conduct, and dissemination of research.
