Developing a National Framework for Consumer Involvement in Cancer Control in Australia

Submission note: For the Thesis Partial Fulfilment Doctor of Nursing (Research) Professional Doctorate (HDNR) to the School of Nursing and Midwifery, College of Science, Health and Engineering, La Trobe University, Victoria, Australia.

Despite consumer involvement in health and cancer control in Australia and internationally over several decades, the role of the consumer continues to reside at the margins of patient care and cancer control systems. With consumers now demanding more involvement in cancer control than has been historically afforded, this thesis offers a framework for guiding consumer involvement in cancer control in Australia with the expectation that it may improve outcomes for people affected by cancer. Thesis Aim This thesis aimed to describe the method and findings arising from the development of the National Framework for Consumer Involvement in Cancer Control in Australia. Project Design A three phased project design based on the principles of participatory research was adopted for the project. Quantitative and qualitative data were captured throughout the governance, consultation and development phases. Fifty-four organisations represented by seventy-five participants, consumers, health professionals, researchers and policy maker experts reached consensus on the framework and its constituent; elements, roles and model.2ResultsThis national framework for consumer involvement in cancer control in Australia offers systematic evidence-based guidance for consumers, health professionals, policy makers, researchers and organisations and includes:1. Four elements for guiding the development of consumer involvement in cancer control; i) committed organisations, ii)capable consumers; iii) inclusive groups; iv) shared focus.2. Five roles for guiding consumer involvement in cancer control at a patient, service and system level; i) personal engagement; ii)advocate; iii) advisor; iv) expert; v) partner.3. A model for the implementation of consumer involvement including; i) levels of participation on a hierarchy; ii) consumer capability; iii) organisational capacity. Conclusion The national framework for consumer involvement comprising elements, roles and a model for consumer involvement in cancer control, may offer the opportunity for more effective and meaningful consumer involvement. In addition, the framework allows for consumers to be respected, valued and legitimised in contributing towards improved outcomes. This proposed framework may guide evidence-based consumer involvement in cancer control for organisations, consumers, health professionals, policy makers, researchers with national and international applicability.