Patient involvement in medical research

Definition: Research undertaking ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. The term ‘public’ includes: patients, potential patients, carers and those who use health and social care services as well as those from organisations which represent service users. (INVOLVE, 1996) Introduction Public involvement in medical research is not new. In response to the growing interest in participatory research and ‘citizen science’, and the inclusion of these approaches in research activities, the Health Technology Assessment (HTA) investigated the advantages and disadvantages of methods of public engagement to identify and prioritise research topics 20 years ago. A good example of these early initiatives included representation on research ethics committees. Boote and colleagues (2002) undertook a review of the literature and posed four questions regarding public involvement in health research: 1) How can public involvement be conceptualised? 2) How and why does public involvement influence health research? 3) How can this influence be measured? 4) What factors are associated with successful public involvement in health research? Following on from this work conceptual frameworks to address these issues and others were developed. The National Institute for Health Research (NIHR) clinical research network (CRN) strategic priorities for the Clinical Research Nurse Workforce proposed objectives for 2013/2014, including improving access to research opportunities and supporting the development of public, carer and patient involvement and engagement in research (www.nihr.ac.uk/our-faculty/clinical-research-staff/clinical-research-nurses/). The NIHR acknowledges that public and patient involvement are essential, stating that the public are ‘our greatest strength and we could not do our work without your help’, and are therefore at the heart of their remit. The degree of patient involvement will vary depending on the stage at which the research is. Purely laboratory-based research using human tissues, such as umbilical venous blood obtained at delivery, to provide the first step in testing a hypothesis, would require substantially less patient input in the planning stages than an RCT of a new treatment.