How patients' experiences contribute to decision making: illustrations from DIPEx (personal experiences of health and illness)

Aim To describe how people use their and other people's experiences ('experiential evidence') in making health care decisions. Background People faced with health decisions may employ not only clinical evidence and advice, but also their own previous experiences and the experiences of others who have faced similar decisions. Professionals have taken little notice of people's use of such experiential evidence and its importance in practice; acknowledging it would improve communication with patients. Methods The data come from the DIPEx (personal experiences of health and illness) project, which involves rigorous analysis of narrative interviews of people with particular conditions, chosen to represent the widest practicable range of experiences of each condition. Each collection consists of 40-50 interviews. Results The analyses of people's experiences are summarized for patients and professionals on a website (http://www.dipex.org) and illustrated by clips (video, audio or written) from the interviews. We draw on the qualitative research conducted for DIPEx to consider some of the different ways that people integrate experiential information when they face decisions about antenatal screening, childhood immunization and treatment for cancer. Conclusions Other patients' experiences are an important part of the evidence that people use when making decisions about health care. People are naturally drawn to other people's stories, which add salience to medical information and make facts palatable and memorable. Patients' experiences are not an alternative to the evidence base - they are part of it; to dismiss them as 'anecdotes' is a serious misunderstanding. There are established methods, grounded in social science traditions, which can be used to research and report patients' experiences. Health professionals, as well as patients, need to consider and value this experiential evidence. Implications for Nursing Management Managers and clinicians can help patients by guiding them to information resources, such as DIPEx, that present evidence-based health information through patients' experiences.