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Community Engagement in Support of Moving Toward Universal Health Coverage

Community Engagement in Support of Moving Toward Universal Health Coverage Health Systems & Reform, 5(1):66–77, 2019 Published with license by Taylor & Francis Group, LLC ISSN: 2328-8604 print / 2328-8620 online DOI: 10.1080/23288604.2018.1541497 Research Article Community Engagement in Support of Moving Toward Universal Health Coverage Pascale Allotey *, David T. Tan , Thomas Kirby, and Liza Haslan Tan UN University International Institute for Global Health UNU-IIGH, Federal Territory of Kuala Lumpur, Malaysia CONTENTS Abstract—Community engagement describes a complex political Introduction process with dynamic negotiation and renegotiation of power and authority between providers and recipients of health care in order to Methods achieve a shared goal of universal health care coverage. Though Discussion examples exist of community engagement projects, there is very Conclusion little guidance on how to implement and embed community References engagement as a concerted, integrated, strategic, and sustained component of health systems. Through a series of case studies, this article explores the factors that enable community engagement particularly with a direct impact on health systems. INTRODUCTION Universal health coverage (UHC) has its foundations in the Alma Ata Declaration of 1978 when in one of only a few unanimous votes, member states agreed on a call to action to protect and promote the health of all people through primary health care. Primary health care was “based on practical, scientifically sound and socially acceptable methods and technology made universally accessible through people’s full participation and at a cost that the community and country can afford.” The Alma Ata Declaration recognized Keywords: community engagement, universal health coverage inequalities in health status as socially, politically, and eco- Received 24 August 2018; revised 16 October 2018; accepted 21 October 2018. nomically unacceptable; affirmed the importance of eco- *Correspondence to: Pascale Allotey; Email: pascale.allotey@unu.edu nomic and social development as a prerequisite to the attainment of health as a human right; and emphasized the © 2019 UN University critical role of participation of individuals and communities This is an Open Access article distributed under the terms of the Creative Commons Attribution 3.0 IGO License (https://creativecommons.org/licenses/ in the planning and implementation of their health care. by/3.0/igo/), which permits non-commercial re-use, distribution, and reproduc- Despite significant challenges, and 40 years on, the tion in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. This article shall not be used or underlying principles and values of the Alma Ata reproduced in association with the promotion of commercial products, services Declaration continue to drive an agenda for equitable and or any entity. There should be no suggestion that the World Health Organization (WHO) endorses any specific organization, products or services. The use of the accessible health systems. Building on lessons over the WHO logo is not permitted. This notice should be preserved along with the 40 years, UHC is being promoted to ensure access to the article's original URL. Disclaimer The authors are staff members of the World Health Organization and are themselves alone responsible for the views right health services, at the right time, for all, without expo- expressed in the Article, which do not necessarily represent the views, deci- sure to financial hardship. UHC requires the establishment sions, or policies of the World Health Organization or Taylor & Francis Group. 66 Allotey et al.: Community Engagement in Support of Moving Toward Universal Health Coverage 67 of financing models that enable the provision of services and In this article, we explore how the process of engagement ensure that those for whom the services are provided do not with communities can be implemented to inform and incur catastrophic expenditure. UHC aims to strengthen enhance health systems and support progress toward UHC. health systems; reduce inefficiencies; develop strategies to We begin with the assumption that as a constitutional right in enhance the reach of quality, affordable services to even the most countries, community engagement in the design of most marginalized; and revitalize the structures that enable health policy and health care is desirable and an important the enjoyment of the right of all to the highest attainable intervention. We provide a brief overview of the concept of standard of health. UHC thus proposes a framework through community engagement and the challenges of undertaking which health and well-being, as defined in the Sustainable community engagement. We then outline the findings of Development Goals can be addressed. a scoping review that compiles a series of case studies on Financing is the key component of UHC, to balance the community engagement in health systems in the Western 3–7 cost of quality care against limited resources. In addition Pacific region. These provide the basis for a discussion of to the financing of coverage, it is important to understand factors that enable community engagement within health what services might be needed as well as how they might be systems. We highlight the gaps in current policy dialogue delivered. To that end, there have also been a wide range of and research on community engagement and conclude with innovations and technologies that have focused on quality recommendations for future directions for engaging commu- essential services and service models to ensure that care nities toward the achievement of UHC. provided can be patient centered. However, there is also a demand side to the financing and provision of health care, the behaviour of individuals, families, and communities Community Engagement—An Overview that make up the population must be considered. The evi- Community engagement describes a complex political pro- dence on how to implement UHC to deliver on reaching even cess with dynamic negotiation and renegotiation of power the most marginalized is limited, particularly in the mechan- and authority between providers and recipients of a service isms to support participation in the design and implementa- 8,9 or between political authorities and citizens. The purpose of tion of strategies and programs to achieve UHC. The community engagement is to establish a collaborative rela- outcomes of poor engagement of consumers of health care tionship toward the achievement of a common goal. Ideally, services include, among others, poor uptake of services, in the process, communities become increasingly empow- inappropriate overuse of services, low health literacy, and 10,11 ered, gain a shared sense of ownership of the agenda, and poor understanding of health and health care. assume joint accountability. Within the context of UHC, The need for engagement is normative and recognized not effective community engagement would enable communities only as inextricably linked to democratic principles but also as to be integral to decision making about the sorts of services integral to the right to health. The Sustainable Development that are provided and how they are delivered. Communities Goals call for integrated, intersectoral approaches that are under- could hold providers accountable for the quality and out- pinned by social justice, equity, and human rights. These neces- comes, invest time and effort to ensure sustainability, and be sarily require strategies that enable inclusiveness and active participants in their health care. opportunities to give voice to communities. It has also been In practice, community engagement covers multiple levels argued that grounding the case for UHC in human rights, legal of negotiating power, described here and summarized in and ethical arguments, and the promotion of community engage- Table 1. Examples of specific activities that have included ment provides a compelling case to strengthen the economic case communities at some level are not uncommon. Authorities for UHC. Global politics highlight a strengthening of demo- may engage communities through consultations with com- cratic processes, and citizens are increasingly vocal. Access to munity leaders or key stakeholders to gather information; health care is often a significant part of election manifestos, and they may seek collaborative cooperation with communities increasing access to information means that people are generally for improved service delivery, by sensitizing communities better informed about issues that affect their health. Health through surveys and town meetings or actively soliciting systems have had to be responsive to changing health priorities, partnerships with civil society groups and mobilization of such as the types of services that need to be covered, the needs of community volunteers; and they may reach beyond colla- different population groups as population demographic profiles 14,15 boration, inviting co-creation of health solutions through change, and the types of treatments that may be considered shared decision making. essential and/or optional. 68 Health Systems & Reform, Vol. 5 (2019), No. 1 Engagement Type Description Consultative Engagement carried out to disseminate or obtain information. The community does not play a role in decision making or action Collaborative Community shares in the implementation of an intervention, although they may not have participated in intervention design or decision making Co-creation Community actively designs intervention Horizontal engagement Community is the primary driver of intervention, with limited participation from governing authorities TABLE 1. Engagement-Type Framework Used in Scoping Review Community engagement also includes horizontal engage- that community engagement has had to take a backseat to ment. Horizontal engagement describes internal processes of those activities that are considered easier to address and 11,25 participation within communities with limited involvement measure. For funding agencies and governments, from state authorities or external political processes. addressing the supply side of health service delivery still Communities respond to their needs independent of the provides a less complex, structured, and measurable pro- health system that they perceive as unwilling or unable to cess and outcome than the demand (community) side. provide the support required to protect their health. Through Some studies have argued that though individuals and grassroots actions, they mobilize and are self-directed to communities may like the idea of engagement, they address a need in the absence of state support. would be reluctant to be involved in broader policy-level These different types of community engagement achieve discussions beyond those decisions that might have a direct 26–28 different outcomes. Arnstein, a seminal scholar in participa- impact on them. Others suggest that participation tion, suggests a “ladder” of participation , with the highest from communities is unwarranted and tokenistic and can 2,10 level describing community engagement efforts where health be seen as an attack on the medical establishment. and health care are co-created, where decisions for concep- Further reasons for the lack of prioritizing of community tualization, planning, implementation, and evaluation of ser- engagement include that health has traditionally been vices and systems are shared. Communities, in this form of viewed as owned by experts and delivered to people engagement, are “makers and shapers” of the health system through various government mechanisms. For instance, and not merely passive “users and choosers” (p. S14). relatively successful models of UHC, such as the National Arnstein argued that other forms of participation that involve Health Service in the UK and social insurance models in consultation but do not place communities in an equal deci- South Korea and China, were initially implemented with- sion-making role are at best tokenistic. However, more out any significant community engagement. recent scholars suggest that the implied hierarchy in With the increasing recognition that communities need to Arnstein’s ladder analogy is not particularly constructive; be an integral part of health system design as well as imple- the rungs in the ladder may serve different purposes and mentation, there is a major gap in the evidence on the therefore more involvement (higher up the ladder) is not implementation of community engagement; that is, how always appropriate and may not necessarily result in the health systems can embed community engagement in mov- most desirable participatory outcome. The International ing toward achieving UHC. The boundaries of what consti- Association of Public Participation refers to a spectrum of tutes community engagement in health systems are poorly public participation that recognizes the more nuanced defined and descriptions of how to engage, and analyses of forms of participation, which we outline below (see Table 1). what works, are not often described in detail. In this review, therefore, we sought to identify, through case studies, the factors that have enabled community engagement, particu- 30,31 larly with a direct impact on health systems. Community Engagement for UHC—The Challenge Embedding community engagement as a concerted, inte- grated, strategic, and sustained component of health sys- METHODS 23,24 tems has been and remains a challenge. Policy makers argue that there is limited robust evidence that directly We focused primarily on case studies that provide some data links participation with health outcomes. Others contend on the process of community engagement as well as the Allotey et al.: Community Engagement in Support of Moving Toward Universal Health Coverage 69 outcomes that were achieved. The brief for this commis- Seven key case studies are summarized in Table 2. Although the sioned article restricted case studies to those reported in examples outlined below provide some insights into community English and situated in countries within the WHO Western engagement, they are, for the most part, reports of time-limited Pacific Regional Office region and addressed the following research studies and therefore it is difficult to determine their questions: sustainability beyond the duration of the project. 1. In what ways have health systems engaged commu- Case Study of Consultative Engagement: Listening to the nities in strategies to achieve universal health coverage Voices of Children —what are the types of engagement? Part of a larger research study in Vanuatu and Papua New 2. What factors enable or hinder engagement and effec- Guinea, “Voices of Pacific Children with Disability,” was tiveness of engagement? a consultative and collaborative project introduced to 3. What are the key considerations for effective commu- respond to the neglected needs of children with nity engagement to achieve universal health coverage? disabilities. The project elicited the voices of children with disabilities, enabling them to engage with the process Cases were identified through the Proquest, Wiley, Sage, and of identifying the complex intersectionality of lack of power NCBI databases, as well as through the grey literature, to as a child, discrimination faced both in their homes and identify project and program reports from government, civil schools, and the lack of resources that would enhance their society and nongovernmental organizations (NGOs). The capability to function despite the disability. The responses search strategy targeted publications from 2000. The search from the children were used to inform the development of yielded 137 articles; 18 provided some description of a level health and welfare policy and services for a group that is of engagement with or participation from communities. often neglected in health service provision. This is an exam- Cases that described no link to health systems were ple of the use of a consultative approach toward engagement. excluded. The children’s perspectives were important even though they We included in our search projects that involve population were not in a position to participate actively in the imple- groups, patient groups, and stakeholders in health systems. mentation of interventions for their welfare. In broad terms, we were interested in evidence of the efforts Though consultative and collaborative engagement have of health systems’ work with individuals and communities distinct features, engagement efforts can often shift, with initial aimed at improving health and health care at one end and in consultation developing into collaboration. Alternatively, the community-directed projects that informed health care sys- same engagement program may be carried out in different tems at the other. We explored the broader contexts that ways, taking on the features of consultation or collaboration. enabled or hindered community engagement and programs In a resource produced by the World Health Organization that attempted to give voice, particularly to marginalized and (WHO) on strategies for health systems strengthening, popula- vulnerable groups. Health systems were broadly defined to tion consultations are described as a mechanism to elicit infor- include activities of NGOs and other multilateral agencies. mation from interested or affected parts of the population, in The selected cases were chosen because of their particular order to gauge expectations and opinions about health system– relevance to enhancing health systems. The results are pre- related decisions. The results can be used to anticipate any sented to reflect the different types of participation, according unforeseen consequences and to refine decision making. The to the framework of engagement types shown in Table 1.We process is designed to be inclusive and can influence the out- then discuss the factors that enable the integration of commu- come; however, it does begin with an a priori determined nity engagement in UHC. It is important to note that the results direction. For this reason, consultations are of value for mon- are restricted to the English-language literature and limited by itoring the effectiveness, from the perspective of the users, of the lack of detailed implementation descriptions in most pro- health system interventions. jects and studies about the specific aspects of participation or Consultations and deliberations also aim to achieve fair- engagement that yielded success or failure. ness and transparency. They are particularly effective, for instance, in seeking feedback and assessing the differential Findings: Case Examples benefits of particular programs and identifying potential Case examples are presented below, highlighting the implemen- harms or challenges for subgroups of the population. tation of community engagement approaches and raising discus- Consultations do not generally seek whole-of-population sion points on the attributes of different methods of engagement. representativeness; by design, they focus on special interest 70 Health Systems & Reform, Vol. 5 (2019), No. 1 Engagement Factors Affecting Integration Type Engagement Approach Purpose with UHC Outcome Consultative Listening to the Voices of Provide avenue for Engaging with children with Informing of policy and Children Using creative/ perspectives of disabilities provided an entry services for neglected play methods to facilitate a “voiceless” group, point for engaging with group communication of children’s disabled children, to be parents and families who for perspectives heard reasons of stigmatization would not otherwise engage with the health system. This opened up the opportunity for patient-centered care Consultative/ AHWs in diabetes monitoring Support health service Extent to which AHWs were Improved collaborative programs Increased delivery planning and integrated with registered communication with involvement of AHWs for action at the local and nurses and general patients, better recall breaking down regional levels practitioners. Institutional of patients wih communication barriers with affirmation and support for diabetes who had community patients AHWs’ role missed diabetic reviews Malaria elimination in Laos Promote uptake and Leveraging existing partnership Increased adherence to Recruitment of community adherence to program, with community. Flexibility the intervention, volunteers to engage overcome language to respond to broader health development of community, report on and barriers needs identified by volunteers address villager concerns community. Time-limited intervention. Lack of long- term integration into local health systems Collaborative Reducing malaria transmission Distribution of bed nets Strength of existing social Successful intervention, in Vanuatu Identify and and management of the mechanisms for eventual but scale-up was less enact social mechanisms for environment community ownership. effective in other long-term embedding of Time-limited intervention. apparently similar malaria prevention practices Scalability of project to islands contexts with more complex social–cultural and environmental conditions. Limited scope of intervention Partners in Leprosy Action CSO initiative to build Implementation grounded in Covers 91% of the target Establishing community capacity, reduce stigma, creation of networks through population compared clinics and conducting local and improve the quality partnerships with local to 72% in the best area capacity building for skin of and access to care for executive, health, and of coverage from the health care patients with leprosy education government public sector offices Sea ambulances Community- Financial model for Community empowerment via Coverage for women on devised solutions to improve sustainable maintenance connecting employment remote islands to access to childbirth care of sea ambulances opportunities with health facilities for PhilHealth framework childbirth increased from 20% to 90% Horizontal mDengue mobile application Address delays in Community empowerment to The intervention is in the engagement Enabling community to authorities’ response to address pressing health beta testing phase and effectively bring dengue reports of exposed concerns evaluation is ongoing breeding sites to authorities’ drains and puddles in attention public sites TABLE 2. Summary of Key Case Studies in Scoping Review Allotey et al.: Community Engagement in Support of Moving Toward Universal Health Coverage 71 groups or sections of the wider population. Consultations reaching patients who had missed diabetes reviews, and can take the form of surveys, group discussions, or even AHWs were also credited with breaking down communica- referenda. tion and cultural barriers. This level of engagement is often undervalued under an Similar AHW programs have demonstrated good cover- 49,50 Arnstein model of participation because though communities age and health outcomes. These programs have provided might contribute to an understanding of the problem, they good models for community-based care and management of 34,50 are not necessarily an active part of the solution. Though it chronic conditions like type 2 diabetes. does provide valuable information to inform policy and services, communities can often feel let down if there is no Case Study of Consultative/Collaborative Engagement: perceived short- to medium-term direct benefit in response Malaria Elimination in Laos to their inputs. White describes the purpose of this engage- A malaria elimination project combined elements of ment as nominal; to provide a level of legitimacy, commu- consultative and collaborative engagement. Here, nities are informed or sensitized as part of the process, which a predesigned package of interventions was presented to may be important, but are not expected to be a part of the community through existing community partners, but a change process. the engagement was required to promote uptake and adherence—primarily a consultative form of engagement. Case Study of Consultative/Collaborative Engagement: Ongoing discussions with the residents informed adapta- Aboriginal Health Workers in Diabetes Monitoring tions in the intervention to be responsive to the needs of Programs the community—even beyond the focus on malaria elim- ination—a strategy that generated buy-in and enhanced A common example of contractual consultation/colla- the coverage of the treatment. Additionally, community boration is the employment of community health workers 45 volunteers were required to overcome the language bar- or provision of incentives for community volunteers. There rier as the target community was a small linguistic min- is an extensive body of literature on the role and effective- ority in Laos. Though beginning as interpreters, the ness of community health workers and community health volunteers took on additional responsibilities and owner- volunteers in community-based programs and in temporarily 46 ship as the project progressed (collaborative elements). It addressing the shortfall in human resources for health, but is noteworthy, however, that this was part of a time- very few examples exist of sustaining community health limited study and was not integrated into local health worker programs. A notable exception is in Indigenous systems. health care programs that integrate a community workforce, including family, and formal and informal carers into the 45 Case Study of Collaborative Engagement: Reducing Malaria health system. Indigenous communities in more remote Transmission in Vanuatu areas, particularly ones that are marginalized by poverty and geography and are historically disenfranchised, run A government-led program in Vanuatu solicited commu- a major risk of being left behind. nity support toward interventions to reduce malaria transmis- The Aboriginal health workers (AHWs) diabetes monitor- sion. The project involved active collaboration of community ing program, for example, uses self-management support. members in the distribution of bed nets and in the manage- Aboriginal health workers are a trained, credentialed cadre ment of the environment to reduce potential breeding sites of the health workforce operating in all states and territories for the vector. The intervention was considered a success, in Australia. In an audit of the monitoring program of resulting in a significant reduction in breeding sites and chronic disease management care in Aboriginal elimination of malaria transmission in sites like the island Community Controlled Health Services, AHWs in one of of Aneityum. However, this outcome has been hard to the services had an integral role in diabetes care, working in replicate and scale up across other islands. A research pro- collaboration with the patient, nurse, and general practitioner ject was therefore undertaken to explicitly explore aspects of (collaborative engagement). In the remaining three services, community participation that may have contributed to the the AHWs’ role was limited to observing patients and pro- success in Aneityum. The existence of strong social mechan- viding information (consultative engagement). The colla- isms within the Aneityum communities was perceived to be borative engagement resulted in higher service delivery an important factor in maintenance of the program, espe- rates and better clinical outcomes. Indeed, the involvement cially after outside actors and funding were withdrawn when of an AHW was found to be an important facilitator for the time-limited intervention ended. In the outer islands, 72 Health Systems & Reform, Vol. 5 (2019), No. 1 however, community participation was more difficult utilization of facility-based deliveries from 20% to 90% and because of the increasing complexity and diversity of social has remained sustainable. and environmental contexts. Indeed, unique histories shaped The collaborative engagement cases outlined above illus- what was possible, acceptable, and considered successful in trate transformative participation that involves shared own- community engagement, and locally successful methods may ership at all levels and therefore has the potential to change 51–53 54 not be easily replicable elsewhere. Finally, the interven- existing institutions and structures. The advantages of co- tion in Aneityum was highly targeted, and the social mechan- creation include increased trust and therefore value and isms that enabled success could have been leveraged for effective utilization of services. Additionally, CSOs are an broader and longer-term health accomplishments. increasingly important and growing sector that introduce a further partner and stakeholder in the community engage- Case Study of Collaborative Engagement: Partners in ment process. Though they usually act as representatives of Leprosy Action sectors in the community, they may also play an almost independent role as a stakeholder with interests related to Partners in Leprosy Action (PILA) in the Philippines is an but separate from that of communities and government. This example of a horizontal, socially innovative, community is usually the case if the CSO is also a private-sector entity. engagement initiative led initially by a civil society organiza- tion, the Philippine Leprosy Mission. The Philippines records the highest number of new leprosy cases in the region and has Case Study of Horizontal Engagement: Dengue Mobile challenges with case detection and accessing the new cases to Application provide treatment and manage the spread. The Philippine The mDengue mobile application was developed in 2016 Leprosy Mission mobilizes patients, their carers, and district as a community initiative fueled by dissatisfaction with the health staff for training and development of resources to help to public health response to potential mosquito breeding sites. build capacity, reduce stigma, and improve the quality of and Raised initially during a community meeting, the community access to care for patients with leprosy. The initiative works highlighted their frustration with the persistent delays of with the Department of Education to access schools and screen environmental health officers to deal with reports of exposed for skin health, to avoid the stigma of leprosy. The development drains and puddles in public sites. The mobile application, of partnerships and engagement with local stakeholders which is openly accessible and verifiable, enables the upload through workshops and training events have led to co-creation of photographs and Global Positioning System coordinates to of solutions that have helped to strengthen the district-level an open-access site that displays the time to response by the health systems. PILA was possible because of the devolution public health officer. Contrary to concerns, the development of authority to local government, providing the context for and trial process has strengthened the relationship between the active engagement with civil society organizations (CSOs) various stakeholders in the community and district health working at the grassroots level. The PILA initiative covers services, and further mobile applications are under develop- 91% of the target population compared to 72% in the best ment to enhance opportunities for joint projects. area of coverage from the health department. Case Study of Collaborative Engagement: Sea Ambulances DISCUSSION Another CSO initiative, also in the Philippines, brings together the private sector, community, and health services. Progress toward UHC requires not only technical knowledge Described as a social entrepreneurship program, the program but also political know-how. A critical part of developing was conceptualized to address poor access for women on political know-how is community engagement, especially to remote islands to facilities for deliveries. Although there are advance health in marginalized groups that are underserved 56–58 sea ambulances, the numbers are not enough to service the by the mainstream health system. Indeed, it is important need. There were some boats that could be used for transporta- to note that all of the case studies on engagement were in the tion, but these had high fuel and maintenance costs. The com- context of those who are not well served by the existing munity co-created a financial model that first helped to upgrade mainstream health care system. This may reflect the unusual a local health facility, which was then accredited by the Health nature of the cases and therefore a publication bias, so it Department. The accreditation enabled eligibility for raising cannot be assumed that engagement is or should be limited funds through reimbursements, which could, in turn, subsidize to these contexts. Nonetheless, the application of engage- the maintenance of the boats. The joint initiative increased ment in these cases shows how community participation Allotey et al.: Community Engagement in Support of Moving Toward Universal Health Coverage 73 contributes toward making the universality of health care of a nonparticipatory process, curtailing the overall effectiveness possible. of the health-sector reform process, especially with regard to These same mechanisms enable devolved or decentralized ensuring accountability and rights. In contrast, a sectorwide health system models in mainstream health care, which can approach, not only to health but also to education and welfare, enhance the quality and sustainability of UHC in the face of was introduced in New Zealand because of community consulta- growing demands on health systems worldwide. Such systems tion and political lobby. The result was the Whānau Ora generally provide smaller population groups with greater homo- approach, which has led to a significant extension and utilization geneity of interests and ease of diverse representation. In of and satisfaction with health services. Like the Australian Australia, decentralization has resulted in the development of AHW program, Whānau Ora recognizes the health disparities primary health networks with greater accountability to the target across the Indigenous population and aims to support commu- populations. The primary health networks have had contractual nities rather than individuals as the primary locus for health care. obligations to commission appropriate health care services. This is an approach that was developed with the Maori commu- Community engagement, in this instance, has been through nity and takes into account cultural and acceptable practices for statutory bodies like the Consumers Health Forum and commu- the target communities. nity advisory groups. A major advantage is in the ability to tailor health services to the needs of local communities, given the CONCLUSION variation in geography, demography, socioeconomic status, and health needs of the various populations across Australia. The above discussion on decentralization, contextual under- standings, and need for systemswide approaches highlight the The selected cases demonstrate the importance of the politi- need for a better understanding of the role of power in UHC. As cal, social, and environmental contexts in enabling the success of the compilation of evidence for the value of community community engagement as a mechanism to make progress engagement for health grows, it is also important to identify toward UHC. Three interrelated elements in particular stand the methods, from a health system perspective, for engaging out: time frame, scope, and community embeddedness of inter- communities effectively in efforts to achieve UHC. ventions. It is interesting to note that, except for the AHW case study, the top-down engagement examples examined herein came with end dates, whereas the bottom-up engagement exam- Power Balance ples aimed to provide an ongoing service/meet an ongoing need. There are two separate challenges of power balance in com- The time limitations of top-down engagement may be in part due munity engagement: the power balance between community to grant funding cycles but also reflect top-down tendencies in engagement systems and existing governing structures and community engagement: that engagement is often instrumental the power balance within the community itself under engage- —a tool to solve a particular problem—rather than an integral ment. These involve control of resources, control of partici- part of the broader health system. Applications of community pation and debate, and the capacity to shape interests. engagement limited in scope and duration can generate lasting The reason Arnstein and many other advocates of com- success in solving particular problems, such as eradication of munity engagement have focused on the issue of power and malaria on the island of Aneityum, when successfully embedded citizen control is that without decision-making ability, com- in target communities. However, ongoing engagement pro- munity engagement can easily become a sham. This is espe- vided entry points for the malaria intervention in Laos, and the cially important because most community engagement flexibility of that intervention enabled issues of drinking water projects are driven by external groups. In the long term, and other basic health care to be addressed. Such integration when community engagement mechanisms do not promote goes beyond using local knowledge and perspectives of problems the ability to make and implement decisions, this creates unavailable to high-level decision makers to improve information frustration that undermines participation; paradoxically, the flows and delivery mechanisms for particular issues and provides ability of community engagement to hold existing govern- the necessary platform for working toward UHC. ment structures to account requires the support from those Other studies have also highlighted the need for a systemwide very same structures. approach to community engagement rather than processes that The second power balance issue lies within communities are often ad hoc. An analysis of World Bank health-sector and societies. Although participatory mechanisms are sup- reforms, for instance, highlighted the constraints that the posed to provide a voice for marginalized groups, success in approach to community engagement imposed on program man- achieving equitable outcomes depends on power distribution, agement and service delivery. The engagement was on the basis level of participant motivation, and presence of facilitating 74 Health Systems & Reform, Vol. 5 (2019), No. 1 groups. Indeed, bottom-up processes may amplify local as quality of care, patient satisfaction, and health ser- power asymmetries relative to status quo. vice utilization. Addressing power balance in community engagement 2. Evidence of community partnership activities that are requires good design—and new knowledge to enable design. sustained beyond or end with funding cycles and the Though standardizing participatory approaches is counter- factors that affect these outcomes. productive, there needs to be a clear interface between 3. Lessons from implementation of interventions that fail. representative and participatory government structures to 4. How to scale up successful community engagement clarify decision making and implementation responsibilities interventions to other localities. and ensure clear channels of communication and action. Understanding how these interfaces influence outcomes Engaging communities in decisions that affect their lives is remains a major research need. key to strong and robust societies. Universal health coverage recognizes the core contribution of health and well-being to sustainable development and the provision of health care as a public good, a fundamental right, and a shared responsi- Methods for Effective Engagement bility. When community engagement goes beyond instru- Community engagement is an important process in the imple- mentalism and recognizes this right and responsibility, it mentation of health interventions, but there is a general dearth can be effective in ensuring that health services are available in the documentation of process-related evidence. Several stu- to all—especially marginalized groups. dies have attempted to assess the evidence for the effectiveness of community engagement in the development of health policy. DISCLOSURE OF POTENTIAL CONFLICTS OF Though there are clear benefits such as increased health literacy, INTEREST the outcomes are often poorly specified and it is often difficult to draw out the elements of participation that are effective and No potential conflict of interest was reported by the authors. why. It is interesting to note that where benefits of community engagement are explicitly addressed, the outcomes listed focus FUNDING on values and social goods and not on quantitatively measurable cost or program effectiveness indicators. Research from This work was supported by the WHO Western Pacific Australia, for instance, describes the benefits as recognition of Regional Office Manila. rights to equitable health care, perception of public value, and robust and enduring relationships. Measurable outcomes ORCID include increased compliance to treatment regimes, increased 20,68 health literacy, and value for money. Pascale Allotey http://orcid.org/0000-0002-6942-5774 David T. Tan http://orcid.org/0000-0003-4820-2878 Community engagement is also an important means of Liza Haslan Tan http://orcid.org/0000-0002-8563-2765 identifying mechanisms to move toward UHC as well as an end in itself. 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Community Engagement in Support of Moving Toward Universal Health Coverage

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Health Systems & Reform, 5(1):66–77, 2019 Published with license by Taylor & Francis Group, LLC ISSN: 2328-8604 print / 2328-8620 online DOI: 10.1080/23288604.2018.1541497 Research Article Community Engagement in Support of Moving Toward Universal Health Coverage Pascale Allotey *, David T. Tan , Thomas Kirby, and Liza Haslan Tan UN University International Institute for Global Health UNU-IIGH, Federal Territory of Kuala Lumpur, Malaysia CONTENTS Abstract—Community engagement describes a complex political Introduction process with dynamic negotiation and renegotiation of power and authority between providers and recipients of health care in order to Methods achieve a shared goal of universal health care coverage. Though Discussion examples exist of community engagement projects, there is very Conclusion little guidance on how to implement and embed community References engagement as a concerted, integrated, strategic, and sustained component of health systems. Through a series of case studies, this article explores the factors that enable community engagement particularly with a direct impact on health systems. INTRODUCTION Universal health coverage (UHC) has its foundations in the Alma Ata Declaration of 1978 when in one of only a few unanimous votes, member states agreed on a call to action to protect and promote the health of all people through primary health care. Primary health care was “based on practical, scientifically sound and socially acceptable methods and technology made universally accessible through people’s full participation and at a cost that the community and country can afford.” The Alma Ata Declaration recognized Keywords: community engagement, universal health coverage inequalities in health status as socially, politically, and eco- Received 24 August 2018; revised 16 October 2018; accepted 21 October 2018. nomically unacceptable; affirmed the importance of eco- *Correspondence to: Pascale Allotey; Email: pascale.allotey@unu.edu nomic and social development as a prerequisite to the attainment of health as a human right; and emphasized the © 2019 UN University critical role of participation of individuals and communities This is an Open Access article distributed under the terms of the Creative Commons Attribution 3.0 IGO License (https://creativecommons.org/licenses/ in the planning and implementation of their health care. by/3.0/igo/), which permits non-commercial re-use, distribution, and reproduc- Despite significant challenges, and 40 years on, the tion in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. This article shall not be used or underlying principles and values of the Alma Ata reproduced in association with the promotion of commercial products, services Declaration continue to drive an agenda for equitable and or any entity. There should be no suggestion that the World Health Organization (WHO) endorses any specific organization, products or services. The use of the accessible health systems. Building on lessons over the WHO logo is not permitted. This notice should be preserved along with the 40 years, UHC is being promoted to ensure access to the article's original URL. Disclaimer The authors are staff members of the World Health Organization and are themselves alone responsible for the views right health services, at the right time, for all, without expo- expressed in the Article, which do not necessarily represent the views, deci- sure to financial hardship. UHC requires the establishment sions, or policies of the World Health Organization or Taylor & Francis Group. 66 Allotey et al.: Community Engagement in Support of Moving Toward Universal Health Coverage 67 of financing models that enable the provision of services and In this article, we explore how the process of engagement ensure that those for whom the services are provided do not with communities can be implemented to inform and incur catastrophic expenditure. UHC aims to strengthen enhance health systems and support progress toward UHC. health systems; reduce inefficiencies; develop strategies to We begin with the assumption that as a constitutional right in enhance the reach of quality, affordable services to even the most countries, community engagement in the design of most marginalized; and revitalize the structures that enable health policy and health care is desirable and an important the enjoyment of the right of all to the highest attainable intervention. We provide a brief overview of the concept of standard of health. UHC thus proposes a framework through community engagement and the challenges of undertaking which health and well-being, as defined in the Sustainable community engagement. We then outline the findings of Development Goals can be addressed. a scoping review that compiles a series of case studies on Financing is the key component of UHC, to balance the community engagement in health systems in the Western 3–7 cost of quality care against limited resources. In addition Pacific region. These provide the basis for a discussion of to the financing of coverage, it is important to understand factors that enable community engagement within health what services might be needed as well as how they might be systems. We highlight the gaps in current policy dialogue delivered. To that end, there have also been a wide range of and research on community engagement and conclude with innovations and technologies that have focused on quality recommendations for future directions for engaging commu- essential services and service models to ensure that care nities toward the achievement of UHC. provided can be patient centered. However, there is also a demand side to the financing and provision of health care, the behaviour of individuals, families, and communities Community Engagement—An Overview that make up the population must be considered. The evi- Community engagement describes a complex political pro- dence on how to implement UHC to deliver on reaching even cess with dynamic negotiation and renegotiation of power the most marginalized is limited, particularly in the mechan- and authority between providers and recipients of a service isms to support participation in the design and implementa- 8,9 or between political authorities and citizens. The purpose of tion of strategies and programs to achieve UHC. The community engagement is to establish a collaborative rela- outcomes of poor engagement of consumers of health care tionship toward the achievement of a common goal. Ideally, services include, among others, poor uptake of services, in the process, communities become increasingly empow- inappropriate overuse of services, low health literacy, and 10,11 ered, gain a shared sense of ownership of the agenda, and poor understanding of health and health care. assume joint accountability. Within the context of UHC, The need for engagement is normative and recognized not effective community engagement would enable communities only as inextricably linked to democratic principles but also as to be integral to decision making about the sorts of services integral to the right to health. The Sustainable Development that are provided and how they are delivered. Communities Goals call for integrated, intersectoral approaches that are under- could hold providers accountable for the quality and out- pinned by social justice, equity, and human rights. These neces- comes, invest time and effort to ensure sustainability, and be sarily require strategies that enable inclusiveness and active participants in their health care. opportunities to give voice to communities. It has also been In practice, community engagement covers multiple levels argued that grounding the case for UHC in human rights, legal of negotiating power, described here and summarized in and ethical arguments, and the promotion of community engage- Table 1. Examples of specific activities that have included ment provides a compelling case to strengthen the economic case communities at some level are not uncommon. Authorities for UHC. Global politics highlight a strengthening of demo- may engage communities through consultations with com- cratic processes, and citizens are increasingly vocal. Access to munity leaders or key stakeholders to gather information; health care is often a significant part of election manifestos, and they may seek collaborative cooperation with communities increasing access to information means that people are generally for improved service delivery, by sensitizing communities better informed about issues that affect their health. Health through surveys and town meetings or actively soliciting systems have had to be responsive to changing health priorities, partnerships with civil society groups and mobilization of such as the types of services that need to be covered, the needs of community volunteers; and they may reach beyond colla- different population groups as population demographic profiles 14,15 boration, inviting co-creation of health solutions through change, and the types of treatments that may be considered shared decision making. essential and/or optional. 68 Health Systems & Reform, Vol. 5 (2019), No. 1 Engagement Type Description Consultative Engagement carried out to disseminate or obtain information. The community does not play a role in decision making or action Collaborative Community shares in the implementation of an intervention, although they may not have participated in intervention design or decision making Co-creation Community actively designs intervention Horizontal engagement Community is the primary driver of intervention, with limited participation from governing authorities TABLE 1. Engagement-Type Framework Used in Scoping Review Community engagement also includes horizontal engage- that community engagement has had to take a backseat to ment. Horizontal engagement describes internal processes of those activities that are considered easier to address and 11,25 participation within communities with limited involvement measure. For funding agencies and governments, from state authorities or external political processes. addressing the supply side of health service delivery still Communities respond to their needs independent of the provides a less complex, structured, and measurable pro- health system that they perceive as unwilling or unable to cess and outcome than the demand (community) side. provide the support required to protect their health. Through Some studies have argued that though individuals and grassroots actions, they mobilize and are self-directed to communities may like the idea of engagement, they address a need in the absence of state support. would be reluctant to be involved in broader policy-level These different types of community engagement achieve discussions beyond those decisions that might have a direct 26–28 different outcomes. Arnstein, a seminal scholar in participa- impact on them. Others suggest that participation tion, suggests a “ladder” of participation , with the highest from communities is unwarranted and tokenistic and can 2,10 level describing community engagement efforts where health be seen as an attack on the medical establishment. and health care are co-created, where decisions for concep- Further reasons for the lack of prioritizing of community tualization, planning, implementation, and evaluation of ser- engagement include that health has traditionally been vices and systems are shared. Communities, in this form of viewed as owned by experts and delivered to people engagement, are “makers and shapers” of the health system through various government mechanisms. For instance, and not merely passive “users and choosers” (p. S14). relatively successful models of UHC, such as the National Arnstein argued that other forms of participation that involve Health Service in the UK and social insurance models in consultation but do not place communities in an equal deci- South Korea and China, were initially implemented with- sion-making role are at best tokenistic. However, more out any significant community engagement. recent scholars suggest that the implied hierarchy in With the increasing recognition that communities need to Arnstein’s ladder analogy is not particularly constructive; be an integral part of health system design as well as imple- the rungs in the ladder may serve different purposes and mentation, there is a major gap in the evidence on the therefore more involvement (higher up the ladder) is not implementation of community engagement; that is, how always appropriate and may not necessarily result in the health systems can embed community engagement in mov- most desirable participatory outcome. The International ing toward achieving UHC. The boundaries of what consti- Association of Public Participation refers to a spectrum of tutes community engagement in health systems are poorly public participation that recognizes the more nuanced defined and descriptions of how to engage, and analyses of forms of participation, which we outline below (see Table 1). what works, are not often described in detail. In this review, therefore, we sought to identify, through case studies, the factors that have enabled community engagement, particu- 30,31 larly with a direct impact on health systems. Community Engagement for UHC—The Challenge Embedding community engagement as a concerted, inte- grated, strategic, and sustained component of health sys- METHODS 23,24 tems has been and remains a challenge. Policy makers argue that there is limited robust evidence that directly We focused primarily on case studies that provide some data links participation with health outcomes. Others contend on the process of community engagement as well as the Allotey et al.: Community Engagement in Support of Moving Toward Universal Health Coverage 69 outcomes that were achieved. The brief for this commis- Seven key case studies are summarized in Table 2. Although the sioned article restricted case studies to those reported in examples outlined below provide some insights into community English and situated in countries within the WHO Western engagement, they are, for the most part, reports of time-limited Pacific Regional Office region and addressed the following research studies and therefore it is difficult to determine their questions: sustainability beyond the duration of the project. 1. In what ways have health systems engaged commu- Case Study of Consultative Engagement: Listening to the nities in strategies to achieve universal health coverage Voices of Children —what are the types of engagement? Part of a larger research study in Vanuatu and Papua New 2. What factors enable or hinder engagement and effec- Guinea, “Voices of Pacific Children with Disability,” was tiveness of engagement? a consultative and collaborative project introduced to 3. What are the key considerations for effective commu- respond to the neglected needs of children with nity engagement to achieve universal health coverage? disabilities. The project elicited the voices of children with disabilities, enabling them to engage with the process Cases were identified through the Proquest, Wiley, Sage, and of identifying the complex intersectionality of lack of power NCBI databases, as well as through the grey literature, to as a child, discrimination faced both in their homes and identify project and program reports from government, civil schools, and the lack of resources that would enhance their society and nongovernmental organizations (NGOs). The capability to function despite the disability. The responses search strategy targeted publications from 2000. The search from the children were used to inform the development of yielded 137 articles; 18 provided some description of a level health and welfare policy and services for a group that is of engagement with or participation from communities. often neglected in health service provision. This is an exam- Cases that described no link to health systems were ple of the use of a consultative approach toward engagement. excluded. The children’s perspectives were important even though they We included in our search projects that involve population were not in a position to participate actively in the imple- groups, patient groups, and stakeholders in health systems. mentation of interventions for their welfare. In broad terms, we were interested in evidence of the efforts Though consultative and collaborative engagement have of health systems’ work with individuals and communities distinct features, engagement efforts can often shift, with initial aimed at improving health and health care at one end and in consultation developing into collaboration. Alternatively, the community-directed projects that informed health care sys- same engagement program may be carried out in different tems at the other. We explored the broader contexts that ways, taking on the features of consultation or collaboration. enabled or hindered community engagement and programs In a resource produced by the World Health Organization that attempted to give voice, particularly to marginalized and (WHO) on strategies for health systems strengthening, popula- vulnerable groups. Health systems were broadly defined to tion consultations are described as a mechanism to elicit infor- include activities of NGOs and other multilateral agencies. mation from interested or affected parts of the population, in The selected cases were chosen because of their particular order to gauge expectations and opinions about health system– relevance to enhancing health systems. The results are pre- related decisions. The results can be used to anticipate any sented to reflect the different types of participation, according unforeseen consequences and to refine decision making. The to the framework of engagement types shown in Table 1.We process is designed to be inclusive and can influence the out- then discuss the factors that enable the integration of commu- come; however, it does begin with an a priori determined nity engagement in UHC. It is important to note that the results direction. For this reason, consultations are of value for mon- are restricted to the English-language literature and limited by itoring the effectiveness, from the perspective of the users, of the lack of detailed implementation descriptions in most pro- health system interventions. jects and studies about the specific aspects of participation or Consultations and deliberations also aim to achieve fair- engagement that yielded success or failure. ness and transparency. They are particularly effective, for instance, in seeking feedback and assessing the differential Findings: Case Examples benefits of particular programs and identifying potential Case examples are presented below, highlighting the implemen- harms or challenges for subgroups of the population. tation of community engagement approaches and raising discus- Consultations do not generally seek whole-of-population sion points on the attributes of different methods of engagement. representativeness; by design, they focus on special interest 70 Health Systems & Reform, Vol. 5 (2019), No. 1 Engagement Factors Affecting Integration Type Engagement Approach Purpose with UHC Outcome Consultative Listening to the Voices of Provide avenue for Engaging with children with Informing of policy and Children Using creative/ perspectives of disabilities provided an entry services for neglected play methods to facilitate a “voiceless” group, point for engaging with group communication of children’s disabled children, to be parents and families who for perspectives heard reasons of stigmatization would not otherwise engage with the health system. This opened up the opportunity for patient-centered care Consultative/ AHWs in diabetes monitoring Support health service Extent to which AHWs were Improved collaborative programs Increased delivery planning and integrated with registered communication with involvement of AHWs for action at the local and nurses and general patients, better recall breaking down regional levels practitioners. Institutional of patients wih communication barriers with affirmation and support for diabetes who had community patients AHWs’ role missed diabetic reviews Malaria elimination in Laos Promote uptake and Leveraging existing partnership Increased adherence to Recruitment of community adherence to program, with community. Flexibility the intervention, volunteers to engage overcome language to respond to broader health development of community, report on and barriers needs identified by volunteers address villager concerns community. Time-limited intervention. Lack of long- term integration into local health systems Collaborative Reducing malaria transmission Distribution of bed nets Strength of existing social Successful intervention, in Vanuatu Identify and and management of the mechanisms for eventual but scale-up was less enact social mechanisms for environment community ownership. effective in other long-term embedding of Time-limited intervention. apparently similar malaria prevention practices Scalability of project to islands contexts with more complex social–cultural and environmental conditions. Limited scope of intervention Partners in Leprosy Action CSO initiative to build Implementation grounded in Covers 91% of the target Establishing community capacity, reduce stigma, creation of networks through population compared clinics and conducting local and improve the quality partnerships with local to 72% in the best area capacity building for skin of and access to care for executive, health, and of coverage from the health care patients with leprosy education government public sector offices Sea ambulances Community- Financial model for Community empowerment via Coverage for women on devised solutions to improve sustainable maintenance connecting employment remote islands to access to childbirth care of sea ambulances opportunities with health facilities for PhilHealth framework childbirth increased from 20% to 90% Horizontal mDengue mobile application Address delays in Community empowerment to The intervention is in the engagement Enabling community to authorities’ response to address pressing health beta testing phase and effectively bring dengue reports of exposed concerns evaluation is ongoing breeding sites to authorities’ drains and puddles in attention public sites TABLE 2. Summary of Key Case Studies in Scoping Review Allotey et al.: Community Engagement in Support of Moving Toward Universal Health Coverage 71 groups or sections of the wider population. Consultations reaching patients who had missed diabetes reviews, and can take the form of surveys, group discussions, or even AHWs were also credited with breaking down communica- referenda. tion and cultural barriers. This level of engagement is often undervalued under an Similar AHW programs have demonstrated good cover- 49,50 Arnstein model of participation because though communities age and health outcomes. These programs have provided might contribute to an understanding of the problem, they good models for community-based care and management of 34,50 are not necessarily an active part of the solution. Though it chronic conditions like type 2 diabetes. does provide valuable information to inform policy and services, communities can often feel let down if there is no Case Study of Consultative/Collaborative Engagement: perceived short- to medium-term direct benefit in response Malaria Elimination in Laos to their inputs. White describes the purpose of this engage- A malaria elimination project combined elements of ment as nominal; to provide a level of legitimacy, commu- consultative and collaborative engagement. Here, nities are informed or sensitized as part of the process, which a predesigned package of interventions was presented to may be important, but are not expected to be a part of the community through existing community partners, but a change process. the engagement was required to promote uptake and adherence—primarily a consultative form of engagement. Case Study of Consultative/Collaborative Engagement: Ongoing discussions with the residents informed adapta- Aboriginal Health Workers in Diabetes Monitoring tions in the intervention to be responsive to the needs of Programs the community—even beyond the focus on malaria elim- ination—a strategy that generated buy-in and enhanced A common example of contractual consultation/colla- the coverage of the treatment. Additionally, community boration is the employment of community health workers 45 volunteers were required to overcome the language bar- or provision of incentives for community volunteers. There rier as the target community was a small linguistic min- is an extensive body of literature on the role and effective- ority in Laos. Though beginning as interpreters, the ness of community health workers and community health volunteers took on additional responsibilities and owner- volunteers in community-based programs and in temporarily 46 ship as the project progressed (collaborative elements). It addressing the shortfall in human resources for health, but is noteworthy, however, that this was part of a time- very few examples exist of sustaining community health limited study and was not integrated into local health worker programs. A notable exception is in Indigenous systems. health care programs that integrate a community workforce, including family, and formal and informal carers into the 45 Case Study of Collaborative Engagement: Reducing Malaria health system. Indigenous communities in more remote Transmission in Vanuatu areas, particularly ones that are marginalized by poverty and geography and are historically disenfranchised, run A government-led program in Vanuatu solicited commu- a major risk of being left behind. nity support toward interventions to reduce malaria transmis- The Aboriginal health workers (AHWs) diabetes monitor- sion. The project involved active collaboration of community ing program, for example, uses self-management support. members in the distribution of bed nets and in the manage- Aboriginal health workers are a trained, credentialed cadre ment of the environment to reduce potential breeding sites of the health workforce operating in all states and territories for the vector. The intervention was considered a success, in Australia. In an audit of the monitoring program of resulting in a significant reduction in breeding sites and chronic disease management care in Aboriginal elimination of malaria transmission in sites like the island Community Controlled Health Services, AHWs in one of of Aneityum. However, this outcome has been hard to the services had an integral role in diabetes care, working in replicate and scale up across other islands. A research pro- collaboration with the patient, nurse, and general practitioner ject was therefore undertaken to explicitly explore aspects of (collaborative engagement). In the remaining three services, community participation that may have contributed to the the AHWs’ role was limited to observing patients and pro- success in Aneityum. The existence of strong social mechan- viding information (consultative engagement). The colla- isms within the Aneityum communities was perceived to be borative engagement resulted in higher service delivery an important factor in maintenance of the program, espe- rates and better clinical outcomes. Indeed, the involvement cially after outside actors and funding were withdrawn when of an AHW was found to be an important facilitator for the time-limited intervention ended. In the outer islands, 72 Health Systems & Reform, Vol. 5 (2019), No. 1 however, community participation was more difficult utilization of facility-based deliveries from 20% to 90% and because of the increasing complexity and diversity of social has remained sustainable. and environmental contexts. Indeed, unique histories shaped The collaborative engagement cases outlined above illus- what was possible, acceptable, and considered successful in trate transformative participation that involves shared own- community engagement, and locally successful methods may ership at all levels and therefore has the potential to change 51–53 54 not be easily replicable elsewhere. Finally, the interven- existing institutions and structures. The advantages of co- tion in Aneityum was highly targeted, and the social mechan- creation include increased trust and therefore value and isms that enabled success could have been leveraged for effective utilization of services. Additionally, CSOs are an broader and longer-term health accomplishments. increasingly important and growing sector that introduce a further partner and stakeholder in the community engage- Case Study of Collaborative Engagement: Partners in ment process. Though they usually act as representatives of Leprosy Action sectors in the community, they may also play an almost independent role as a stakeholder with interests related to Partners in Leprosy Action (PILA) in the Philippines is an but separate from that of communities and government. This example of a horizontal, socially innovative, community is usually the case if the CSO is also a private-sector entity. engagement initiative led initially by a civil society organiza- tion, the Philippine Leprosy Mission. The Philippines records the highest number of new leprosy cases in the region and has Case Study of Horizontal Engagement: Dengue Mobile challenges with case detection and accessing the new cases to Application provide treatment and manage the spread. The Philippine The mDengue mobile application was developed in 2016 Leprosy Mission mobilizes patients, their carers, and district as a community initiative fueled by dissatisfaction with the health staff for training and development of resources to help to public health response to potential mosquito breeding sites. build capacity, reduce stigma, and improve the quality of and Raised initially during a community meeting, the community access to care for patients with leprosy. The initiative works highlighted their frustration with the persistent delays of with the Department of Education to access schools and screen environmental health officers to deal with reports of exposed for skin health, to avoid the stigma of leprosy. The development drains and puddles in public sites. The mobile application, of partnerships and engagement with local stakeholders which is openly accessible and verifiable, enables the upload through workshops and training events have led to co-creation of photographs and Global Positioning System coordinates to of solutions that have helped to strengthen the district-level an open-access site that displays the time to response by the health systems. PILA was possible because of the devolution public health officer. Contrary to concerns, the development of authority to local government, providing the context for and trial process has strengthened the relationship between the active engagement with civil society organizations (CSOs) various stakeholders in the community and district health working at the grassroots level. The PILA initiative covers services, and further mobile applications are under develop- 91% of the target population compared to 72% in the best ment to enhance opportunities for joint projects. area of coverage from the health department. Case Study of Collaborative Engagement: Sea Ambulances DISCUSSION Another CSO initiative, also in the Philippines, brings together the private sector, community, and health services. Progress toward UHC requires not only technical knowledge Described as a social entrepreneurship program, the program but also political know-how. A critical part of developing was conceptualized to address poor access for women on political know-how is community engagement, especially to remote islands to facilities for deliveries. Although there are advance health in marginalized groups that are underserved 56–58 sea ambulances, the numbers are not enough to service the by the mainstream health system. Indeed, it is important need. There were some boats that could be used for transporta- to note that all of the case studies on engagement were in the tion, but these had high fuel and maintenance costs. The com- context of those who are not well served by the existing munity co-created a financial model that first helped to upgrade mainstream health care system. This may reflect the unusual a local health facility, which was then accredited by the Health nature of the cases and therefore a publication bias, so it Department. The accreditation enabled eligibility for raising cannot be assumed that engagement is or should be limited funds through reimbursements, which could, in turn, subsidize to these contexts. Nonetheless, the application of engage- the maintenance of the boats. The joint initiative increased ment in these cases shows how community participation Allotey et al.: Community Engagement in Support of Moving Toward Universal Health Coverage 73 contributes toward making the universality of health care of a nonparticipatory process, curtailing the overall effectiveness possible. of the health-sector reform process, especially with regard to These same mechanisms enable devolved or decentralized ensuring accountability and rights. In contrast, a sectorwide health system models in mainstream health care, which can approach, not only to health but also to education and welfare, enhance the quality and sustainability of UHC in the face of was introduced in New Zealand because of community consulta- growing demands on health systems worldwide. Such systems tion and political lobby. The result was the Whānau Ora generally provide smaller population groups with greater homo- approach, which has led to a significant extension and utilization geneity of interests and ease of diverse representation. In of and satisfaction with health services. Like the Australian Australia, decentralization has resulted in the development of AHW program, Whānau Ora recognizes the health disparities primary health networks with greater accountability to the target across the Indigenous population and aims to support commu- populations. The primary health networks have had contractual nities rather than individuals as the primary locus for health care. obligations to commission appropriate health care services. This is an approach that was developed with the Maori commu- Community engagement, in this instance, has been through nity and takes into account cultural and acceptable practices for statutory bodies like the Consumers Health Forum and commu- the target communities. nity advisory groups. A major advantage is in the ability to tailor health services to the needs of local communities, given the CONCLUSION variation in geography, demography, socioeconomic status, and health needs of the various populations across Australia. The above discussion on decentralization, contextual under- standings, and need for systemswide approaches highlight the The selected cases demonstrate the importance of the politi- need for a better understanding of the role of power in UHC. As cal, social, and environmental contexts in enabling the success of the compilation of evidence for the value of community community engagement as a mechanism to make progress engagement for health grows, it is also important to identify toward UHC. Three interrelated elements in particular stand the methods, from a health system perspective, for engaging out: time frame, scope, and community embeddedness of inter- communities effectively in efforts to achieve UHC. ventions. It is interesting to note that, except for the AHW case study, the top-down engagement examples examined herein came with end dates, whereas the bottom-up engagement exam- Power Balance ples aimed to provide an ongoing service/meet an ongoing need. There are two separate challenges of power balance in com- The time limitations of top-down engagement may be in part due munity engagement: the power balance between community to grant funding cycles but also reflect top-down tendencies in engagement systems and existing governing structures and community engagement: that engagement is often instrumental the power balance within the community itself under engage- —a tool to solve a particular problem—rather than an integral ment. These involve control of resources, control of partici- part of the broader health system. Applications of community pation and debate, and the capacity to shape interests. engagement limited in scope and duration can generate lasting The reason Arnstein and many other advocates of com- success in solving particular problems, such as eradication of munity engagement have focused on the issue of power and malaria on the island of Aneityum, when successfully embedded citizen control is that without decision-making ability, com- in target communities. However, ongoing engagement pro- munity engagement can easily become a sham. This is espe- vided entry points for the malaria intervention in Laos, and the cially important because most community engagement flexibility of that intervention enabled issues of drinking water projects are driven by external groups. In the long term, and other basic health care to be addressed. Such integration when community engagement mechanisms do not promote goes beyond using local knowledge and perspectives of problems the ability to make and implement decisions, this creates unavailable to high-level decision makers to improve information frustration that undermines participation; paradoxically, the flows and delivery mechanisms for particular issues and provides ability of community engagement to hold existing govern- the necessary platform for working toward UHC. ment structures to account requires the support from those Other studies have also highlighted the need for a systemwide very same structures. approach to community engagement rather than processes that The second power balance issue lies within communities are often ad hoc. An analysis of World Bank health-sector and societies. Although participatory mechanisms are sup- reforms, for instance, highlighted the constraints that the posed to provide a voice for marginalized groups, success in approach to community engagement imposed on program man- achieving equitable outcomes depends on power distribution, agement and service delivery. The engagement was on the basis level of participant motivation, and presence of facilitating 74 Health Systems & Reform, Vol. 5 (2019), No. 1 groups. Indeed, bottom-up processes may amplify local as quality of care, patient satisfaction, and health ser- power asymmetries relative to status quo. vice utilization. Addressing power balance in community engagement 2. Evidence of community partnership activities that are requires good design—and new knowledge to enable design. sustained beyond or end with funding cycles and the Though standardizing participatory approaches is counter- factors that affect these outcomes. productive, there needs to be a clear interface between 3. Lessons from implementation of interventions that fail. representative and participatory government structures to 4. How to scale up successful community engagement clarify decision making and implementation responsibilities interventions to other localities. and ensure clear channels of communication and action. Understanding how these interfaces influence outcomes Engaging communities in decisions that affect their lives is remains a major research need. key to strong and robust societies. Universal health coverage recognizes the core contribution of health and well-being to sustainable development and the provision of health care as a public good, a fundamental right, and a shared responsi- Methods for Effective Engagement bility. When community engagement goes beyond instru- Community engagement is an important process in the imple- mentalism and recognizes this right and responsibility, it mentation of health interventions, but there is a general dearth can be effective in ensuring that health services are available in the documentation of process-related evidence. Several stu- to all—especially marginalized groups. dies have attempted to assess the evidence for the effectiveness of community engagement in the development of health policy. DISCLOSURE OF POTENTIAL CONFLICTS OF Though there are clear benefits such as increased health literacy, INTEREST the outcomes are often poorly specified and it is often difficult to draw out the elements of participation that are effective and No potential conflict of interest was reported by the authors. why. It is interesting to note that where benefits of community engagement are explicitly addressed, the outcomes listed focus FUNDING on values and social goods and not on quantitatively measurable cost or program effectiveness indicators. Research from This work was supported by the WHO Western Pacific Australia, for instance, describes the benefits as recognition of Regional Office Manila. rights to equitable health care, perception of public value, and robust and enduring relationships. Measurable outcomes ORCID include increased compliance to treatment regimes, increased 20,68 health literacy, and value for money. Pascale Allotey http://orcid.org/0000-0002-6942-5774 David T. Tan http://orcid.org/0000-0003-4820-2878 Community engagement is also an important means of Liza Haslan Tan http://orcid.org/0000-0002-8563-2765 identifying mechanisms to move toward UHC as well as an end in itself. 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Journal

Health Systems & ReformTaylor & Francis

Published: Jan 2, 2019

Keywords: community engagement; universal health coverage

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