Patient-centred care: what consumer health organisations say and do

Concepts like patient-centered care and shared decision making are increasingly prominent topics in discourse on quality in healthcare with the growing prevalence of chronic disease. Although patient-centered care has been touted as a way forward, it remains an ambiguous concept with variable application in healthcare. Greater clarity is needed around the concept of patient-centered care alongside a stronger knowledge base on the perspectives of health consumers with complex needs and service providers, including those outside the formal healthcare system, such as consumer health organizations (CHO). This study explored CHO patient-centered policy, related practice, and organizational views on the potential value of pharmacy delivered patient-centered care. In-depth interviews were conducted with 15 organizational representatives until no new themes emerged. Data were concurrently thematically analyzed by three researchers from a public health or pharmacy background. Participants called for a paradigm shift away from the paternalistic biomedical model to shared power that values consumer choice and promotes active engagement in health. There was disparity between articulation of policy and practice, with CHOs often more patient-centered than they claimed to be. Participants described a wealth of innovative and often patient-centered services, and ascribed under-utilization of these resources to limited awareness. Selected CHOs adopted strategies that health professionals can learn from, such as combining multiple elements of patient-centered care and seeking to build consumer capacity to self-manage. Health professional education, current infrastructure and remuneration were cited as barriers to more widespread delivery of patient-centered care. However, participants suggested creative solutions to address selected factors, some specific to pharmacy. Both pharmacy and CHOs are under-utilized healthcare resources and there is potential for synergy between these sectors to promote patient-centered care. Pharmacy could benefit from insight into the CHO perspective of patient-centered care and also increase utilization of CHO services through direct referral.