Background
Methods
The authors engaged with the stakeholders of the six interventions at the start of the review to ensure their key areas of interest were covered in the review, and also consulted with the other experts in the local reference panel to confirm that the review addressed relevant gaps in the literature.‘Involving communities in decision-making and in the planning, design, governance and/or delivery of services. Community engagement activities can take many forms including service-user networks, healthcare forums, volunteering or interventions delivered by trained peers’ ([24], p. xiii).
Inclusion criteria | |
English peer-reviewed literature | |
Paper discussing CE interventions involving citizens or communities in the decision-making, planning, designing, governance, and/or delivery of health or care services and/or policies | |
Papers set within OECD country | |
Exclusion criteria | |
Unpublished literature, papers which were difficult to obtain | |
Papers discussing CE interventions NOT involving citizens or communities in the decision-making, planning, designing, governance, or delivery of health and care services, or policies | |
Papers discussing CE interventions which only involved citizens or communities in health-research | |
Papers not set within OECD countries | |
Papers not set within a health or wellbeing context | |
Papers published before the year 2007 |
Exclusion | |
Does the paper focus on CE as the main subject area or as an important aspect of a wider programme? Papers only tangentially describing CE were excluded | |
Does the CE intervention, described involve citizens or communities on the macro or meso-level? Papers concerned only with micro-level CE interventions were excluded (e.g. individual social participation) | |
Does the paper focus on CE as the main subject area or as an important aspect of a wider programme? Papers only tangentially describing CE were excluded | |
Does the CE intervention operate on Rowe & Frewer [26] ‘Public Participation’ level? Papers concerned with interventions solely based on the ‘Public Communication’ or ‘Public Consultation’ levels were excluded | |
Relevance | |
Does the paper describe contextual details? OR | |
Does the paper describe mechanisms? OR | |
Does the paper describe CE strategies, processes implemented? OR | |
Does the paper describe CE models, theories applied? OR | |
Does the paper describe the engagement of disadvantaged/vulnerable groups? OR | |
Does the paper discuss health and wellbeing outcomes of CE intervention? OR | |
Does the paper describe CE as way of developing intersectoral approaches/new models of collaborative care? |
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Intervention: refers to interventions’ implemented activities, strategies and resources [27] e.g., citizen advisory panel meetings, neighbourhood clean-up activities, or citizen learning opportunities.
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Mechanism: the concept of ‘mechanism’ does not refer to the intentional resources offered or strategies implemented within an intervention. Rather, it refers to what ‘triggers’ participants to want to participate, or not, in an intervention. Mechanisms usually pertain to cognitive, emotional or behavioural responses to intervention resources and strategies [28], e.g., citizens feeling more empowered due to learning opportunities.
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Context: pertains to the backdrop of an intervention. Context includes the pre-existing organisational structures, the cultural norms and history of the community, the nature and scope of pre-existing networks, and geographic location effects [28, 29], e.g., pre-existing levels of trust between communities and organisations or previous experience of CE interventions.
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Outcome: refers to intended or unexpected intervention outcomes [28] e.g. sustainability, quality integration of services (macro); citizens’ level of involvement in health and care services (meso); citizens’ health and wellbeing outcomes (micro).
Results
Paper | Care setting | Type of participation & main strategies used | Overall outcomes |
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Carlisle (2010) [9]; ethnographic study | Public health |
Social Inclusion Partnership set up to tackle social exclusion and health inequalities within deprived local neighbourhoods
- SIP included representatives from the local authority, primary care, benefits agency and the police, six positions were reserved for community representatives. Twelve residents were recruited to form a community sub-group to work with the SIP chair and manager to develop process for selecting community representatives. - SIP allocated funds and resources to projects and services promoting the health of local population | - Difficulties securing community representation on SIP, especially young residents - Priorities of professionals and residents on SIP were not aligned - Due to enduring disagreements the leader of the community representatives and the SIP chair resigned |
Chan & Benecki (2013) [30]; Qualitative case study | Hospital |
Citizens’ Advisory Panel (CAP) developed efficiency and operational recommendations for Hospital Board
- External consultancy with experience in CE strategies assembled CAP and facilitated their meetings, e.g. by setting tasks like gathering community input on specific topics - Hospital board maintained two-way open communication with CAP | - Majority of respondents felt CAP was an effective way to incorporate community’s perspective in decision-making - Most CAP members said they would participate in similar CE interventions - Board approved the majority of CAP recommendations, which resulted in a balanced budget |
Clark et al. (2010) [31] | Disease-specific community coalition |
Broad community-based asthma coalitions
- Health in All policies approach regarding membership of the coalition (e.g. community providers, schools, patients, parents, hospitals, charities) who all shared concerns regarding asthma prevention and care; ensured at least ¼ of core members were residents or community-based groups - Coalitions aimed to establish leadership which takes into account each members’ needs and concerns - Periodic joint meetings to enabled the coalition to discuss processes and outputs, set clear coalition scope and geographic boundaries, provided continuous feedback and provision of expert assistance if needed | - Fewer asthma symptoms reported among children and greater sense of control in managing the disease for parents - Overall participation rates were highest among community-based groups (e.g. parent or advocacy groups, faith-based groups, youth organisations) and health care providers |
Crondahl & Eklund (2015) [10]; (qualitative) participatory action research | Community, health promotion |
Work Integrated Learning programme (health promotion & peer-support):
- Seven Roma residents employed and trained to work as local health promotion coordinators to empower their local Roma community. - Programme included theoretical module regarding community organising, social determinants of health and health promotion, sources of oppression and discrimination. Practical module allowed coordinators to work in their local communities thus practicing and applying the theoretical training. - Coordinators held interviews with local media to promote their activities | - Enhanced coordinators’ self-acceptance, positive sense of Roma identity and community, self-efficacy skill and sense of control - Introduced coordinators positively to non-Roma society |
De Freitas & Martin (2015) [16]; qualitative case study | Community, mental health care | Peer-support &-recruitment within community mental health advocacy programme promoting Cape Verdean migrants’ rights and access to mental healthcare: - Service-user committee disseminated information about the project, enabled dialogue between service-users, providers and health authorities and held meetings outside organisational sphere. - Service-user peer support group enabling emotional and social support - Training sessions raising service-users’ awareness regarding causes of their disadvantage and tools to help alleviate these | - Enhanced peer-supporter and recruiter health literacy, confidence, communication skills, empowerment |
Durey et al. (2016) [32]; qualitative multiple case study | Community and hospital |
Strategy and priority setting forums consisting of Aboriginal community members and healthcare professionals
- District Aboriginal Health Action Groups (DAHAGs) were located within the structure of the Department of Health in Western Australia and made recommendations to improve health service delivery for Aboriginal people, which the health services were responsible for implementing. - Aboriginal community members in the DAHAGs were nominated by their peers to sit on the DAHAGs for a two-year term. - Community members received governance training, e.g. in meeting procedures, chairing of meetings so they could chair DAHAG meetings | - Improved Aboriginal community capacity - Improved Aboriginal satisfaction with community and hospital setting - Increased levels of trust in local health services - Improved Aboriginal access to care |
Hamamoto et al. (2009) [11]; qualitative case study | Community |
Community volunteering & action groups to develop new healthy living infrastructure
- Community Health Centre engaged community members in tangible projects (e.g. development of unused state park; bicycle repair & distribution programme) - Used a flexible, project-oriented and task-specific approach to enable each project to develop its own distinct set of volunteers and organisational partners. - Monthly scheduled volunteer workdays and used local media to promote activities | - Reclaimed 100 acres of new green space for active-living purposes - Community involvement in tangible projects: 60 volunteers weekly & 50 volunteers each month for community workdays |
Kegler et al. (2009) [41]; mixed methods multiple case study | Community |
California Healthy Cities & Communities Program- community volunteering & action groups
- Local residents engaged in the programme through membership of community-based coalitions to develop shared vision, conduct asset-based community assessments, set priorities, develop and implement action plans. - Residents involved in each programme aspect in e.g. conducting focus groups, community mobilisation activities - Leveraged professional coordinators and volunteers that were well connected within the communities and widely promoted initiatives through local media | - Half of coalitions comprised 75% of residents in the planning phase - Most coalitions maintained at least 50% resident composition during implementation phase - Continued challenges engaging Hispanic residents |
Kelaher et al. (2014) [33]; mixed-methods multiple case study | Regional governance in Aboriginal health |
Regional planning forums responsible for the planning, implementation and governance of the Aboriginal Health National Partnership Agreements
- Forums consisted of local Aboriginal community members and Aboriginal Community Controlled Health Services (ACCHSs) which were governed by board of directors elected by the community they serve, mainstream health providers. - Forums mindful to engage Aboriginal community organisations in all phases of planning and governance - Some forums privileged the views of Aboriginal organisations and community members by ensuring they were co-chaired by an ACCHS representative and the director of the regional health department branch. | - Forums provided an opportunity for engagement that was not funded previously - Forums provided opportunity for mainstream and Aboriginal organisations to work together in a more collaborative way to achieve better health |
Lang et al. (2013) [12]; literature review and qualitative multiple case study | Community setting, health and social domain |
Top-down and bottom-up cooperative governance structures for citizen participation in service provision
- Case 1: the municipality invited residents to join the local initiative but retained full decision-making powers. Design of social service carried out in the traditional way - Case 2: delivery of public service planned by local representatives and citizens. Highly respected local representatives were involved in initiative from the start who engaged and involved residents - Case 3: Delivery of public service planned by local representatives with support from mayor and other local politicians. Idea was that as the initiative matured, resident participation would broaden and include a volunteer activities for the whole community | - Case 1: residents did not feel as if they had ownership of the initiative - Case 2: most residents signed up to the membership and the local council and federal state provided financial support for the cooperative. Management and decision-making reflected local community as residents held decision-making positions - New public service widely used by residents and led to a better range of fresh healthy food being available and a new central meeting point for residents |
Lewis (2014) [17]; ethnographic study | Mental health (hospital and community) |
Service-user involvement in mental health services
- Service-user group involved in a local psychiatric hospital. Its main purpose was to provide information about mental health services and activities in the community and to provide service-user feedback and input. - Voluntary sector community group, which included practitioners and service-users which undertook lobbying activities in relation to mental health policy and services. - Professionals in these groups suggested they extended ‘standing open invitations to people for policy meetings and stated they aimed to better include service-users by giving them information before meetings and buddying them up to attend the meetings. Training initiatives aimed at facilitating service-users’ participation were implemented after the study | - Reinforced hierarchical and power relations which denied service-users equal status - Some service-users felt that gaining access to decision-making bodies was in and of itself an important achievement; while others felt excluded and silenced. - Ultimately, service-users formed their own groups and initiatives |
Luluquisen & Pettis (2014) [34]; qualitative case study | Community |
Residents’ collaborative to improve neighbourhood conditions for healthy living
- From the onset, CE was made a priority and residents were integral to leadership and decision-making in the development and design of priorities, strategies and programmes and the collaborative steering committee - Collaborative included capacity-building training and initiatives for residents; to take on leadership positions in the collaborative, their communities and the broader policy arena - Youth Action Board to give young residents a voice and ensure a youth lens for the collaborative - If there are multiple organisational representatives from one organisation their votes count as one | - Higher percentage of free, healthy breakfast programmes in schools - Higher number of resident volunteers in improving access to healthy food - Improved resident skills and knowledge - Improved access to healthy food in neighbourhood |
Montesanti et al. (2015) [35]; qualitative research with primary care professionals | Community, primary care |
Community Boards, which include members of local marginalised population, govern Community Health Centres
- Suggestions included only initiating CE interventions after sufficient information is gathered on the local population’s characteristics - Leveraging practitioners who have worked in the local community for a longer period of time - Enabling local population to decide how they want to be engaged | - Community members of marginalised communities are more comfortable providing input into the planning or decision-making of services with staff members who have spent years building relationships |
Pennel et al. (2015) [36]; mixed-methods research -multiple sites | Hospital |
Non-profit hospitals mandated to conduct Community Health Needs Assessments using community participation
- One site had its own board of community members, which provided input on community health needs - Another hospital held a community summit, which was attended by 100 community stakeholders & members. Attendees were asked to prioritise top three community health issues and to develop goals & actions for each topic area - Most hospitals only sent out surveys to community | - The majority of hospitals only consulted with communities - 4% if hospitals involved communities in final priority selection of health needs. - 2% of hospitals involved the community in the selection of strategies to address health issues |
Renedo & Marston (2011) [18]; ethnographic study -multiple sites | Primary care, acute care, hospital care |
Patient and public involvement in organisations that provide and commission care
- Training programme aimed at creating ‘effective’ community members to develop ‘professional skills’ - Placed service-users within specific disease-expert categories (e.g. HIV) to elicit specific service-user experiential input | - CE mostly at consultation level |
Schoch-Spana et al. (2013) [42]; qualitative research – multiple sites | Public health emergency preparedness |
Health Departments engaging local communities to ensure preparedness in case of emergencies and disasters
- Recommended combining public deliberation methods with mobilising volunteers and ensuring citizens are involved in planning and decision-making sessions. - Suggested leveraging the shock communities and organisations feel after natural or man-made disaster to engage with each other | - Citizens more likely to come forward asking for information after a disaster - After disaster communities and organisations more open to community engagement to promote community preparedness |
Tenbensel et al. (2008) [37]; qualitative -multiple sites | Primary care |
District Health Boards aimed to engage communities to ensure strategies reflected local populations needs and to orientate health sector towards population health
- DHBs comprised of locally elected board members and community group representatives and facilitated community input through population health needs assessments, open board and committee meetings, formal consultation processes - DHBs had to follow formal planning documents to meet central government requirements | - Particularly in DHBs with large populations, there was wide variety in level and nature of CE activities - Only 55% of respondents felt that DHB decisions were influenced by community input. Community input appeared less influential in strategic planning and more so in more specific areas of service design and delivery |
Van Eijk & Steen (2016) [38]; qualitative multiple case study | Elderly care, disabled persons care |
Service-user council for elderly healthcare provider and for disabled persons
- Patients, family members, voluntary caregivers, and even neighbours can become members of the client council. For one of the councils, members are elected for a four-year period. - The council deliberated on the organisation’s management and quality of care and were responsible for representing all clients. Some organisational decisions could not be made without the council’s permission. | - Client council consistency at risk due to high member turn-over |
Veronesi & Keasey (2015) [39]; qualitative multiple case study | Mental health care, acute care |
Patient and Public interventions to leverage organisational and strategic change
- Broad upfront consultation aimed at all potentially interested parties, open discussions with key stakeholders (staff, local population, patient representatives, voluntary organisations, local authority), and once decisions were taken, a feedback questionnaire submitted to the wider stakeholder base. - Strategic working groups including both professionals and patient and public representatives met regularly to discuss any relevant strategic matters to focus on innovative ways to delivery care | - Improvement in community’s overall attitude to organisational management - Reorganisation plans approved and implemented which resulted in improved clinical targets |
Yoo et al. (2008) [40]; Community-based participatory research-multiple sites | Community, housing |
Resident groups in senior housing identified health issues and developed and implemented strategies and improvement plans for community empowerment
- Resident panels were set up with support of researchers and included interested residents and elected officers of pre-existing tenant organisations - Panels conducted brainstorming sessions to identify community health priorities, and continued to develop strategies and implementation plans to address those priorities - Some panels followed more formal structure with the signing of a memorandum of agreement, others incorporated Panel meetings into the tenant council meetings. | - Some panels were able to take steps to improve tangible aspects of everyday living, e.g. access to age-appropriate exercise equipment, social events like movie nights - Not all panels were able to proceed to implementation stage due to, e.g. conflicts of interests |
Interventions | Enabling contextual factors | Enabling mechanisms | Relevant citations |
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Guiding principle 1: Ensure staff provide supportive and facilitative leadership based on transparency | |||
Provide citizens access to all relevant resources Implement two-way communication with citizens Facilitate citizens’ understanding of key topics | Accessible points of connection between communities & local services Supportive organisational structures Unique points of connection between communities and local services | Staff’s support and facilitation makes citizens feel valued Professionals openly listening to citizens’ problems and ideas, improves professionals’ understanding of communities’ needs Transparency about limited resources can prevent communities from feeling frustrated | Chan & Benecki [30] Durey et al. [32] Tenbensel et al. [37] Yoo et al. [40] |
Guiding principle 2: Foster a safe & trusting environment to enable citizens to provide input | |||
Invest resources in the building of trusting relationships with communities Tailor strategies to citizens’ needs and preferences Hold meetings outside organisational sphere Adjust meetings and activities to citizens’ needs (e.g. language, timetable) Citizens to (co)chair boards, steering groups Hire demographically and culturally diverse staff in order to better reflect and connect with the communities | Accessible organisational structures Community members included in governance and leadership of intervention and engaged in decision-making processes Pre-established trusting relationships with communities | Culturally safe spaces build communities’ confidence to discuss their needs Staff who create safe environments and address citizens’ supportive needs help build trust and cohesion | De Freitas & Martin [16] Durey et al. [32] Kegler et al. [41] Kelaher et al. [33] Luluquisen & Pettis [34] Montesanti et al. [35] Schoch-Spana et al. [42] Veronesi & Keasey [39] |
Guiding principle 3: Ensure citizens’ early involvement | |||
Discuss with citizens the stage at which they want to be involved Align organisational and citizens’ health definitions and priorities Include citizens in needs assessments and identification of priorities | Financial or quality related organisational crises highlighting need for far-reaching change Pre-established collaborative relationships | Early involvement motivates and enables all stakeholders to bring about change Early involvement of some citizens can trigger others to become involved as well | Carlisle (2010) Clark et al. [31] Lang et al. [12] Tenbensel et al. [37] Veronesi & Keasey [39] |
Guiding principle 4: Share decision-making and governance control with citizens | |||
Adjust decision-making methods by having multiple professionals from the same organisation share one vote on decision-making committees, thus levelling out the vote share Place citizens in leadership and decision-making positions Share relevant resources and tools with engaged citizens | More in-depth collaboration between partners Interventions initiated by citizens themselves Organisations willing to address power imbalances | Citizens’ willingness to join intervention depends on extent to which organisations are ready to share control Satisfaction rates of CE forums increases with number of involved citizens Increasing citizens’ input during strategic and decision-making stages is valued by citizens and helps prevent feelings of disempowerment | Carlisle (2010) [9] Clark et al. [31] Durey et al. [32] Kelaher et al. [33] Lang et al. [12] Luluquisen & Pettis [34] |
Guiding principle 5: Acknowledge and address citizens’ experiences of power imbalances | |||
Invest in communities with low levels of readiness to build their capacity Adjust organisational approaches, structures, processes by privileging citizens Allow citizens to shape their own role | Inclusive organisational structures Equal number of citizens and professionals in leadership and decision-making positions Clear remits for professionals and citizens | Clear recognition of citizens’ valuable contributions, legitimises initiatives Equal presence of citizens on forums prevents citizens from experiencing being at the lower end of the power spectrum | Carlisle (2010) [9] Kelaher et al. [33] Lewis [17] Luluquisen & Pettis [34] Renedo & Marston [18] |
Guiding principle 6: Invest in citizens who feel they lack the skills and confidence to engage | |||
Provide professional or leadership training, e.g. in chairing meetings, conducting support-group sessions Provide learning opportunities highlighting causes of citizens’ disadvantage and tools to alleviate these | Citizens motivated to improve their neighbourhoods and services they access | Improved awareness helps citizens to develop greater sense of control, self-confidence, skills Being involved in direct peer recruitment can lead to service-users recognising their own entitlement to participation | Crondahl & Eklund Karlsson [10] De Freitas & Martin [16] Durey et al. [32] Lang et al. [12] Renedo & Marston [18] |
Guiding principle 7: Create quick and tangible wins | |||
Offer short-term mobilisation activities, e.g. neighbourhood clean-ups Ensure citizens’ input is actually used Use local media to share quick win stories | Pressing and visible health and socio-economic needs combined with significant community support for change | Early successes provide momentum, creates trust in CE processes and inspires other citizens to become involved Short-term concrete improvements can maintain citizens’ dedication to CE processes when problems arise | Durey et al. [32] Hamamoto et al. [11] Kegler et al. [41] Luluquisen & Pettis [34] [40]) |
Guiding principle 8: Take into account both citizens’ and organisations’ motivations | |||
Be flexible and allow citizens to focus only on those issues that interest them Use crises situations to catalyse citizen engagement Be transparent about organisational motivations and requirements Be open and receptive to citizens’ negative service-usage experiences | Pressing and visible health and socio-economic needs and significant community support for change Service-users and carers wanting to increase level of social interactions, and to upskill | Catering to citizens’ motivations helps maintain momentum Building on citizens’ emotional links to neighbourhood or services can connect citizens Crises situations can mean organisations are forced to change their traditional patterns | De Freitas & Martin [16] Hamamoto et al. [11] Lang et al. [12] Lewis [17] Pennel et al. [36] Schoch-Spana et al. [42] Van Eijk & Steen [38] Veronesi & Keasey [39] |