Regulation by Patients
The patient has been the missing person in regulatory debates as the health care safety movement paradoxically has paid little attention to the patient’s perspective (Vincent and Coulter 2002; Jorm et al. 2009). This is changing, however, as health services look to redesign their procedures and practices around ‘patientcentred care’ (Picker Institute Europe 2007; Darzi 2009). Patients also are being acknowledged as regulatory actors although the reality seldom matches the promising rhetoric. This chapter analyses the processes through which individual patients can have a say over their own health care and reviews the evidence on the impact of consumer/citizen participation. While the term ‘patient’ is used in this chapter, the language in this area is tricky as alternative words also carry dubious connotations; for example, the terms consumer and customer can imply that health care is a commodity:
Virtually everyone during their life consults health professionals, takes medication and undergoes procedures and through these encounters influences the health system. People might also exert influence through groups that range from self-help groups based on mutual assistance between peers, to formal organizations run by a board and employing professional staff. Non-government organizations (NGOs) advocate on behalf of their clients or a population group and might engage in research, prevention and treatment. Many groups and organizations are singleissue entities, however, arising from longer-term health concerns, such as arthritis, breast cancer, cystic fibrosis, and diabetes. Safety and quality concerns relating to specific conditions, however, may apply generally to all patients.