One For All, All For One? Collective Representation in Healthcare Policy

Abstract

Healthcare collectives, such as patient organizations, advocacy groups, disability organizations, professional associations, industry advocates, social movements, and health consumer organizations have been increasingly involved in healthcare policymaking. Such collectives are based on the idea that individual interests can be aggregated into collective interests by participation, deliberation, and representation. The topic of collectivity in healthcare, more specifically collective representation, has only rarely been addressed in (Western) bioethics. This symposium, entitled: "Collective Representation in Healthcare Policy" of the Journal of Bioethical Inquiry draws attention to this understudied topic from a variety of disciplines, within a variety of socio-cultural contexts. We draw attention to important ethical, cultural, and social questions, and into the practices, justifications for, and implications of collective representation of patients in healthcare policy.

Citizens under the umbrella: citizenship projects and the development of genetic umbrella organizations in the USA and the UK

“…And in both countries, the multiplicity of different disease organizations sustained a diversity of initiatives aimed at securing the best services for patients, with which umbrella organizations inevitably became entangled. Not least, in both settings, the activity of umbrella organizations and their constituent disease organizations raise questions concerning any organization's capacity and legitimacy to represent the interests of its members (Jongsma et al 2018;Baggott and Jones 2018). But as this article has sought to demonstrate, the differences are as illuminating as the commonalities, and deserve to be taken seriously in academic efforts to analyze the forms and meanings of genetic citizenship.…”

“…Panofsky (2011) observes that nowadays patient groups concerned with genetic diseases tend to make use of whatever resources are available to themincluding New Genetics and Society 151 but not limited to financial and biological resourcesto foster their ability to work with scientists and build a relationship with those interested in studying their diseases. At the same time, patient groups are increasingly recognized by health policy experts as sources of valuable information representing the views of patients and their families (Jongsma et al 2018;Baggott and Jones 2018). They therefore function as an organizational platform for patients and their families to involve themselves in research and policymaking.…”

Collective forward-looking responsibility of patient advocacy organizations: conceptual and ethical analysis

“…Many activities, for example, confront them with ethical questions regarding representativeness. The criteria which qualify one or more persons to represent a group are not clearly defined and PAOs typically represent various interests simultaneously, for example, of patients and families [ 17 – 19 ]. Additionally, PAOs need to maintain a balance between professionalization and representativeness.…”

Representing the ‘Voice’ of Patients: How Third Sector Organisations Conceptualise and Communicate Experiential Knowledge in Health Service Development

“…Patient organisations and advocacy groups, made up of and representing people with lived experiences, have become important influencers in matters related to health and illness, health care and policy (Brown et al 2004;Jongsma et al 2018). As representatives of the 'voice' of patients, they bring knowledge derived from lived experiences into decision making and aggregate individual interests into collective interest through participation, deliberation and representation (Jongsma et al 2018). Landzelius (2006) has suggested that these groups can be placed along a spectrum, ranging from informal (e.g.…”