2.1 Document search and selection

Document selection was undertaken through an iterative search and selection process. An initial document search of government websites was conducted between June and July 2020 by two reviewers (A. C. and J. L.) using various key search words (consumer/patient engagement, consumer/patient engagement framework, consumer/patient participation, consumer/patient involvement). This search identified an initial set of 40 documents (engagement frameworks, strategic plans, consumer engagement guidelines, consumer engagement strategies, consumer engagement toolkits and cultural diversity plans). These 40 documents were then discussed with the last reviewer (R. H.) to further refine the search strategy and to develop eligibility criteria.

2.2 Eligibility criteria

Eligible data sources: Federal-, state- and territory-level government health departments and the associated agencies were included as they are primarily responsible for setting principles and policies for the delivery of health services in Australia. Engagement frameworks originating between January 2001 and July 2020 were included. This time period was selected because consumer engagement has increasingly been prioritised in the last 20 years.

Types of documents: We defined consumer engagement frameworks as documents that provided a conceptual structure for engagement with consumers in the decision-making process at various levels of health systems, and that outlined levels and the spectrum of engagement, and the methods and activities of engagement.

Data sources and documents that did not fulfil the above criteria were excluded. Individual local health district-level consumer engagement frameworks were excluded as they linked up to higher-level frameworks included in the analysis. Consumer engagement toolkits, guidelines and implementation plans were excluded as these were outside of the definition. Engagement frameworks for mental health services or drug and alcohol services were also excluded as these were considered very specific areas of engagement for engaging with other minority and priority population groups and were not relevant to the study objectives.

Unit of analysis: The aspects of the framework that discussed the concept of engagement, principles of engagement, process of engagement, type of engagement and activities of engagement with consumers were analysed along with how CALD populations are represented in these documents and what special considerations were made for CALD consumer engagement.

2.3 Document collection and data extraction

After establishing the eligibility criteria, the same reviewers (A. C. and J. L.) applied this to the initial set of 40 documents identified, along with another search conducted of the Australian Government (federal, state and territory) health department websites and associated agencies for eligible documents (see Supporting Information File SB for the full list of the website searched). This search identified 11 publicly available engagement frameworks that fulfilled the eligibility criteria. A protocol for data extraction was developed based on the research aims. Data were independently extracted by the same reviewers (A. C. and J. L.) under the following categories: federal or state level; health system or service level; organisation, document title and year of publication; purpose of the document; key messages regarding consumer engagement; and diverse populations discussed (Table 1).

2.4 Data analysis and reporting

Arnstein's Ladder of citizen engagement³⁸ and Carman et al's.³ frameworks for patient and family engagement were used to guide the narrative data synthesis. These two frameworks are well-established engagement frameworks used to differentiate between tokenistic versus meaningful engagement across the continuum of consumer involvement in the decision-making process and hence were considered relevant for this document analysis.^{3, 38, 39} Along with the original data extraction tool (Table 1), a separate table (Supporting Information File SC) was developed drawing on the similarities and differences between the selected frameworks, focusing on elements of conceptualisation and operationalization of these frameworks. The data extracted were then explored to identify what support structures and contextual features were proposed or adopted by health services in Australia to engage with consumers and how these were discussed in the context of CALD consumers.

A narrative synthesis was conducted. Synthesising data using a narrative synthesis approach allowed us to establish a relationship between research, policy and practice and generate key common concepts relevant to the research objectives.^40-42 Key information from each set of documents was extracted on a data extraction form (Table 1) to provide a narrative on common themes. AC conducted the initial analysis of the data. Data were grouped into categories resembling the research questions and common narratives across the documents examined and analysed. Following this grouping, the findings were discussed with the wider research team and the analysis was further refined. Any disagreements and differences were resolved with discussion.

3.1 Data sources and characteristics

Using Altheide's document analysis approach (Figure 1), a total of 11 engagement frameworks, two at the federal level and nine others across the state and territory levels, were identified as eligible.^43-53 Of the eleven frameworks, three were identified as stakeholder engagement frameworks, while eight comprised community and/or consumer engagement. Where the term stakeholder was used, the term was described as inclusive of consumers and community. The documents were published between 2007 and 2019, with two engagement frameworks scheduled for review in 2018 and 2019, but updated versions of the documents were not publicly available at the time when the search was completed.^{44, 51} Two documents were identified as living documents and subject to regular updates.^{46, 47} All frameworks were directed at the organisational level with the purpose of facilitating engagement with consumers to improve health outcomes, and to comply with Standard 2: Partnering with Consumers Standard of the NSQHS Standards.²⁵ This standard was implemented in 2012, recognising the role of consumers as partners in planning, delivery, measurement and evaluation of systems and services and in planning their own care.²⁵ Two documents were cancer-specific, outlining engagement with consumers in cancer services to improve health outcomes.^{43, 53}

3.2 Q.1) How is engagement conceptualised?

Nine frameworks provided an explicit definition for consumer engagement.^{44-47, 49-53} Engagement in this definition was expressed as the process by which consumers are involved in decision making. This process is consistent with the Deming management approach to continuous improvement of the Plan, Do, Study and Act Cycle.⁵⁴ The process of engagement was further conceptualised in three frameworks as an ongoing cycle supporting engagement activities via thorough planning, preparation, action and evaluation of the activities.^{45, 47, 48} Involvement in the process was articulated as either participation in the whole process or participation in specific activities within the process.^{45, 47, 48} A wide range of concepts were included that described the nature of activities, ranging from consultation through to participation and codesign, reflecting engagement as a continuum. The term ‘participation’ was also used as a synonym for engagement rather than a specific level of engagement in two documents.^{46, 47}

Principles for engagement were explicitly mentioned in eight frameworks,^{44, 47-53} with the four most common principles identified as (1) being purposeful: (2) being participatory in nature; (3) being inclusive and diverse; and (4) continuous improving. These categories closely resembled the process of engagement (planning, preparing, action and evaluation). Being purposeful was described as staying committed to the task and having a clear expectation and understanding of the task, activities and outcomes between health services and the consumers.⁴⁸ Being participatory involved working together with consumers in a partnership, with shared ownership and accountability of the process of engagement.⁴⁷ Being inclusive and diverse was proposed to promote equity within the engagement process and support diverse consumer participation in the process. Being inclusive and diverse varied from being inclusive as much as possible to the ability to embrace diversity where relevant⁴⁴ to identifying opportunities and working collaboratively with a broad range of consumers.⁴⁹ Continuous improvement focused on evaluating engagement activities to improve future opportunities for engagement. This principle also included the dissemination of results to collect feedback from consumers and for quality assurance.^{44, 48-50}

3.3 Q.2) How do consumer engagement frameworks operationalise engagement?

Each document was explored with regard to the operationalization of consumer engagement. Information was examined about the elements of effective engagement, sources for the model of engagement discussed in each framework and the suggested methods and activities proposed to realise the engagement. Key elements required in a service to promote effective engagement were identified as building capacity amongst consumers and organisational staff, having a clear description of the proposed level of participation in a given activity, having financial and physical resources for participation and dedicated time for each task and providing information to consumers for their review.^{43, 44, 46-50, 53} Underpinning organisational features were also identified as prerequisites to successful engagement such as an organisational commitment to engagement,^{43, 47, 53} where diverse consumers participate in advisory committees,^44-50 within a culture of engagement without intimidation, promoting the free exchange of information and positive relationships between consumers and services.^44-52 Evaluation of engagement was discussed in 10 frameworks^44-53 with 7 presenting information on methods of evaluation^{44-47, 49, 50, 52}; however, from a consumer engagement point of view, the method of evaluation appears to have been largely limited to collecting feedback from consumers using surveys.

Although active and meaningful participation in activities was emphasised as critical; one framework at the federal level highlighted that this participation depends on the purpose, task, roles and responsibility, and the issue being addressed.⁴⁸ Models of engagement proposed in the frameworks were adopted from various sources, such as the International Association of Public Participation (IAP2); NSQHS Standard 2: Partnering with consumers; the National Institute of Health and Care Excellence (NICE) framework for community engagement; and the Brager and Specht participation continuum. The nature of engagement proposed and the activities or methods relevant to the nature of engagement were outlined in eight frameworks.^{43-45, 47-50, 53} The frameworks described engagement across the various levels of involvement in the decision-making process, depending on the different models used. The frameworks that used the IAP2 model, NSQHS Standard 2: Partnering with consumers and the NICE framework for community engagement, outlined the level of engagement as participation continuum across five stages (inform, consult, involve, collaborate/participate and empower/consumer-led).^{43, 44, 47, 48, 50, 53} The framework that used the Brager and Specht model outlined the level of engagement across seven stages of consumer control in decision-making (none, received information, is consulted, advises organisation, plan jointly, has delegated control and has control).⁵² Although various stages were used to describe the level of engagement, similarities existed between their classifications. Based on these similarities, the level of involvement can be categorised into three main areas resembling the categories proposed by Carman et al.³: (1) information sharing; (2) collaboration in decision making; and (3) shared partnership and leadership. These areas represented the continuum of engagement from low to high levels of involvement and decision-making power. No explicit involvement in decision making was proposed in the first category, while the second and third categories proposed an explicit role in decision making, with the delegation for decision making provided to consumers in the last category.

Various activities and methods of engagement were suggested across the continuum of engagement. These included display units and surveys for information sharing; focus groups and workshops for collaborations; and consumer participation in quality and safety committees for consumer lead approaches.^47-50 These activities were discussed in the context of level of participation needed from consumers. There was a lack of discussion and clarity on the relationship between the activities used and intended outcomes. Table 2 presents an overview of suggested engagement methods and activities included in the various engagement frameworks along with the most common activities highlighted.

3.4 Q.3) What are the implications of consumer engagement frameworks for CALD consumer engagement in the Australian healthcare system?

Nine of the 11 frameworks mentioned engagement with CALD consumers, explicitly recognising that CALD consumers face additional barriers to engagement.^45-53 Five frameworks mentioned CALD consumers while describing the concepts of community and principles of diversity and inclusion, without any specific discussion for engagement other than the need for addressing language barriers.^49-53 The remaining four frameworks discussed CALD engagement in more detail, outlining organisational prerequisites and opportunities to enhance engagement activities.^45-48 These frameworks were more recent, originating from 2015 onwards, with one framework originating at the federal level and three originating at the state level (New South Wales and Victoria), and highlighted different strategies going forward to address language barriers.

Organisational prerequisites to enhance opportunities for engagement for CALD consumers focused on three key initiatives: (1) provision of culturally sensitive services; (2) greater access to interpreters at the service level; and (3) inclusion of CALD consumers in committees. Provision of culturally sensitive services and engagement strategies was discussed in three frameworks^46-48; however, no clear definition of culturally sensitive services was provided in these documents. External tools and resources were referred to in these frameworks to develop culturally sensitive services. Cultural diversity plans, strategic plans recognising the health needs of CALD consumers and committees representing CALD consumers were identified as mediums through which culturally sensitive services can be developed to optimise opportunities for engagement for CALD consumers.^{47, 48} The need for adequate financial and physical resources and dedicated time was identified as a prerequisite for all consumers; however, for CALD consumers, the need for increased access to interpreters was highlighted as an additional resource requirement in one framework.⁴⁶ While identifying consumers from diverse backgrounds was discussed in the context of broader minority and priority groups overall, identifying CALD consumers was considered essential for advisory committees and governance activities.⁴⁵ However, the degree to which diversity within CALD participants needs to be included in such committees was not clear. The mechanism to involve CALD consumers in advisory panels and committees was described in one framework,⁴⁵ which proposed the recruitment of CALD consumers by multicultural health units or services within the organisation.⁴⁵

Discussion of the facilitation of engagement activities to improve engagement with CALD consumers was focused on two components: (1) addressing language barriers and (2) training staff in cultural responsiveness. Addressing language barriers was discussed in two frameworks in the context of providing consumers with accredited interpreters where needed, where health information was prepared in relevant languages and formats, and policy was developed that mandates the use of accredited interpreters.^{46, 47} The provision of orientation and training for consumers was discussed as critical for effective engagement for all consumers; however, for CALD consumers, two frameworks emphasised providing training to staff and providers, which were designed to improve their cultural responsiveness.^{46, 47} This training was intended to create an environment that is culturally safe, and to ensure that language barriers are addressed when engaging with CALD consumers, thereby enhancing engagement activities.^{46, 47} However, there was limited explanation of what constitutes cultural responsiveness or culturally safe care. The policy mandating interpreter use and the recommendation for staff and provider training in cultural responsiveness appear to have been discussed in the context of improving engagement at a clinical care level rather than participating in healthcare decision making at the health service or organisational level.

4.1 Implications

A broad range of activities has been proposed to promote consumer engagement at all levels of healthcare decision making, with some methods and activities, such as information displays, focus groups and workshops and participation in committees identified commonly across frameworks.^{48, 72} Despite the range of activities identified to enhance engagement, there is currently little consistent and clear information regarding the depth and type of engagement that may arise from a given activity; therefore, it is challenging for healthcare services to determine which engagement activity is best suited to achieve a particular purpose. Of key interest in the present study, there was little evidence regarding the involvement of CALD consumers in engagement activities and those activities that are suitable for CALD consumers or require additional support or adaptations to work effectively.

Our recent research with CALD consumer representatives across Australian healthcare settings highlighted that promoting flexible approaches to participation in consumer engagement activities is critical to enable participation from a diverse CALD population.⁷³ Embedding flexibility for consumers that are convenient to their schedule but also recognise their health condition, caregiving and other responsibilities can promote an enduring and deeper relationship.^{74, 75} The need to value service user input through sufficient reimbursement is also recognised as important for all consumers but particularly those who may be from lower socioeconomic backgrounds, who live further from central city locations or who have caregiving responsibilities.⁷⁴ Modelling policies and guidelines internationally on consumer reimbursement at the national level in Australia may provide one approach to ensure that sufficient reimbursement is consistently provided.^{76, 77}

Given the range of CALD background and diversity between and within groups, the gold-standard approach to ensuring sufficient and appropriate diversity for CALD consumer engagement activities remains elusive;⁴ the documents reviewed were noteworthy for their lack of discussion about the need to consider sociocultural diversity across CALD populations and how sufficiently diverse input might be determined. International literature also supports our findings for the lack of diverse minority representation in consumer engagement literature.^{39, 78} Guidelines for engaging with multicultural communities encourage collaboration with established multicultural services or multicultural committees to seek participants,^{45, 79} which are also recognised as a way to enhance consumer participation internationally.⁸⁰ This approach may lead to disproportionate participation from some CALD groups or some individuals with the inadequate representation of new and emerging CALD groups.⁵⁶ Over time, the use of well-trained consumers in research may lead to desensitisation to the needs of their community.⁸¹ There currently appears to be limited consideration of nuanced sociocultural differences within and between populations.²³ Consumer engagement frameworks provide a valuable opportunity to highlight some of these issues and drive thought and discussion regarding approaches to address issues of widening participation and diversity in CALD consumer engagement nationally and internationally.

Continuous improvement, as a key principle within healthcare, was prominent within the included frameworks. Evaluation of consumer involvement was discussed in many of the frameworks, but not its application for continuous improvement in the methods and activities used for consumer engagement and specifically for CALD groups. Integrating routine feedback and dissemination of lessons learned from consumer engagement activities within consumer engagement frameworks is the next step to support the dissemination of evidence-based methods and activities across healthcare systems. Using a collaborative approach with consumers to evaluate the effectiveness of the consumer engagement methods and activities used and the adaptations or support required for CALD groups will contribute to ensuring that optimal methods and activities are used.⁸²

4.2 Limitations

Our search across the national- and state-level Australian health departments yielded a small sample of documents that fulfilled the inclusion criteria for the present analysis. A range of wider documents that refer or relate to consumer engagement including toolkits for engagement, strategic plans and diversity plans were not included in the present analysis, but may provide wider contextual information or specific support for the application of engagement strategies. Further work may extend the present analysis to explore where consumer engagement frameworks sit within broader guidelines and strategic or diversity plans or may explore the support available for specific activities through available toolkits. By limiting the analysis to the Australian health care setting, our findings are not generalisable outside of Australia, but in exploring frameworks that utilise internationally recognised models of engagement, the findings may have relevance beyond the national context. A comparative analysis is required. Our analysis also focused on the implications of consumer engagement frameworks for CALD populations; consumer engagement for other minority and priority populations requires exploration.