Module 2
Planning
Models for Consumer and Community Involvement
Many frameworks and models for consumer and community involvement exist in health research and for healthcare improvement. All recognise there are different levels of involvement and a range of activities at any level.
The level of engagement chosen depends on the resources you have available and the type of input you require for the project. Typically, more money, time and skill are needed as you progress through the levels of consumer and researcher engagement.
The International Association for Public Participation (IAP2) has designed a Spectrum to assist with selecting the level of participation that defines the public’s role in any community engagement program. The Spectrum is widely respected and quoted in many community engagement programs.
This Spectrum of Public Participation diagram above was provided courtesy of IAP2.
The role of a consumer should always be tailored to the nature of the research or healthcare improvement project to ensure authentic and appropriate involvement.
Exemplars
The community and stakeholder engagement sector believes that engagement, when done well, improves social, environmental and economic outcomes and increases trust in the democratic process.
Following are examples of consumer engagement.
Exemplar 1 - Strategy for Patient-Oriented Research (SPOR)
Overview of the Strategy for Patient-Oriented Research (SPOR) Continuum
The SPOR (Strategy for Patient-Oriented Research) initiative established eleven SUPPORT Units (Support for People and Patient-Oriented Research and Trials) across Canada.
The Alberta SUPPORT Unit (AbSPORU), is one of the SUPPORT Units. It is organised into seven teams called ‘platforms’, including a Patient Engagement platform.
The ‘Levels of Patient and Researcher Engagement in Health Research’ framework below produced by AbSPORU, shows a continuum of six levels of patient and researcher engagement in health research. This framework emphasises the importance of researcher engagement as much as patient engagement.
Dr Virginia Vandall-Walker's video below explains the levels of patient and researcher engagement and how you can use this framework effectively.
Exemplar 2 - National Framework for Consumer Involvement in Cancer
The National Framework for Consumer Involvement in Cancer Control ‘Consumer Involvement Capability’ is designed to support organisations committed to involving consumers in cancer control and to facilitate a consistent approach to consumer engagement.
The Consumer Involvement Capability Framework provides governing principles for consumer engagement, as well as elements and guidance which can be adapted to local settings. While the framework is developed for a cancer context, it can be applied to other areas of healthcare, research and policy development.
The following publications provide information on frameworks about patient or public involvement in health-related research, systematic reviews and co-design.
Manafò et al. (2018), PLOS ONE, Patient and public engagement in priority setting: A systematic rapid review of the literature
Greenhalgh et al. (2019), Health Expectations, Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot
Cancer Australia and Cancer Voices Australia (2011), National Framework for Consumer Involvement in Cancer Control