From rhetoric to reality: including patient voices in supportive cancer care planning

Abstract

Objective To explore the extent and manner of patient participation in the planning of regional supportive care networks throughout the province of Ontario. We consider the disconnect between the rhetoric and reality of patient involvement in network planning and co-ordination. ContextIn 1997, the Province of Ontario, Canada, established a new, regionalized cancer care system. By transferring responsibility to the regional level and to networks, the architects of the new provincial system hoped to broaden participation in decision making and to enhance the responsiveness of decisions to communities.Research approach Through a qualitative, multiple case study approach we evaluated the processes of involving patients in network development. In-depth, semi-structured interviews and document analysis were complemented by observations of provincial meetings, regional council and network meetings.Results The network development processes in the three case study regions reveal a significant gap between intentions to involve patients in health planning and their actual involvement. This gap can be explained by: (i) a lack of clear direction regarding networks and patient participation in these networks; (ii) the dominance of regional cancer centres in network planning activities; and, (iii) the emergence of competing provincial priorities.Discussion These three trends expose the complexity of the notion of public participation and how it is embedded in social and political contexts. The failed attempt at involving patients in health planning efforts is the result of benign neglect of public participation intents and the social and political contexts in which public and patient participation is meant to occur.

Interprofessional collaboration with service users in the development of cancer services: The Cancer Partnership Project

“…In Ontario, the ''Life to Gain'' cancer policy planning process ''ring-fenced'' one-third of all committee and working group seats for cancer patients, establishing consumers as full participants in the process. From 2002 onwards, the same province initiated a patient involvement strategy in the development of new, regional supportive care networks; however, an evaluation concluded that the ''attempt'' had ''failed'', finding a significant gap between intentions to involve patients in health planning and their actual involvement (Gold et al, 2005). User involvement also appears in Australia, with organisations such as Cancer Voices New South Wales facilitating involvement in service planning (Cancer Voices NSW, 2005).…”

Barriers to patient involvement in health service planning and evaluation: An exploratory study

“…A third factor possibly limiting patient involvement may be a lack of guidance. Interviews with health professionals in Canada revealed that patients were not involved in planning for regional supportive care networks as intended because there were no directions provided on how to achieve this [8].…”

“…Studies examining the nature of patient participation in service planning have found that most activities are limited to various forms of consultation, rather than interactive partnerships as are advocated for treatment decision-making [8,9]. Patient involvement in service evaluation has largely been restricted to completing satisfaction surveys [10].…”

Service user engagement and health service reconfiguration: a rapid evidence synthesis

“…[7][8][9][10][11][12][13][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45] See Figure 1 for details.…”

“…40 Another report which looked at the planning of regional supportive cancer services in Ontario, Canada, focused generally on barriers to effective patient involvement. 41 The final case study reference was a web link to 24 reports produced between 2005 and 2012 by the Scottish Health Council on behalf of the Scottish Government. 42 As with the English NHS, Scottish Health Boards are required to involve patients and local communities adequately in relation to significant NHS service change.…”