Developing policy that effectively implements rights-based community participation has long faced challenges in defining and addressing the complex realities of the participation process . To achieve meaningful community participation that leads to progressive realization of the right to health, it is necessary to analyze the paths through which community participation is structured, functions, and relates to other sectors of society [51, 52]. In the Western Cape, policymakers question whether the CMHF provides an accurate reflection of community needs, resources, and values in order to build partnerships through HCs for increased community participation in the health system. Where policy limitations may undercut community participation, reinforcing existing political and social structures and perpetuating health inequalities, these limitations must be explicitly addressed in the development of community participation policy .
In order for community leaders to be seen as authoritative spokespeople in the eyes of the community and the health system, providing a foundation for realizing the health benefits of participation, the method of selection, representation, and participation must be perceived as creating political legitimacy and procedural justice. For example, the benefits of meaningful participation cannot be accomplished if minority and disadvantaged groups are not accurately represented in participatory institutions or do not have substantial voice within the health system . In defining the process by which representatives are elected, appointed, or assigned to HCs, the operational aspects of community participation must be understood before rights-based health outcomes are realized , as the form of selection of community members—by direct election from the entire community, election from specified interest groups, or appointment from local government—is crucial to the programmatic success of any participatory institution .
Beyond the representation process, the legitimacy of community participation requires that representative individuals possess sufficient knowledge of the health system and dedicated commitment to the participatory institutions. Yet representation creates a series of opportunity costs that many community members cannot afford (including lost pay, travel costs, and training difficulties ), and these costs may limit representation only to elites who may not be seen as legitimate spokespersons for the community at large. Even when those traditionally left out of the health system are able to be represented, the political and social dynamics may create an environment in which representation is not possible [19, 55]. Therefore, policymakers must come to understand who is included in the definition of the community and who could potentially be excluded through the implementation of community participation policy.
Given these imperatives for—yet limitations to—the community participation structures outlined in the Draft Policy, this analysis identifies five structural obstacles to community participation in the Western Cape:
There is organizational uncertainty as to what the role of the CMHF is or should be. The CMHF lacks clearly defined authorities within the new DHS, as the CMHF’s informal consultative origins are not commensurate with the formal institutional arrangements that currently structure engagement within the health system.
There is complexity in identifying, selecting, or electing those who truly represent the community. Without established processes for determining community representation, it is often difficult to determine if representatives are participating in the best interests of the communities for whom they claim to speak, denying legitimacy to HC structures.
There is little government support for building the capacity of community representatives. The Department of Health has not instituted a structure to build HC capacity to engage with the health system.
There is a lack of administrative training for HC members. Once a committee member, there are few substantive training or administrative support structures to carry out required community representation functions.
There is unclear commitment to implementing policy for community participation. In the aftermath of developing the Draft Policy, policymakers have not sought to institutionalize community participation structures in implementing the DHS.
From this analysis, it becomes clear that provincial policy holds a crucial role in overcoming these obstacles, facilitating or inhibiting the development of representative institutions conducive to community participation.
When the CMHF was formed in 1995, its establishment came about during a time of major restructuring in the Western Cape health system. At the national level, the Department of Health was seeking to bring together fourteen autonomous health authorities; at the local level, the City of Cape Town alone had twenty-seven distinct authorities providing health services. In this restructuring, the new Provincial Health Department sought to implement national policy by merging various health authorities under the mantle of one DHS. As a forum to discuss these structural reforms with affected communities, the CMHF served an essential, albeit informal, role in bringing together health officials and community members to collaborate and coordinate during the provincial implementation of the national Policy for the Development of the District Health System. With the Western Cape having since moved to formalize other institutional arrangements in the health system, the CMHF’s informal structures cannot effectively structure health system participation without legislatively defined roles and responsibilities.
Since the Western Cape has begun to put in place formal institutions for DHS oversight, the CMHF has not been able to collaborate adequately in a process in which it has no legislative standing or defined mandate within the DHS. This organizational uncertainty in its formal authority greatly inhibits the community’s ability to participate in sophisticated institutional arrangements and rigid lines of authority . As noted by a key stakeholder, “provincial treasury, national treasury, national acts around finance determine how our budgets get formulated – a consultative body can’t really be involved in all of these processes.” Given these institutional limitations to community participation under informal arrangements, CMHF representatives expressed significant alienation from the health system, highlighting how a lack of defined authority has left the CMHF without any formalized basis to engage with the DHS.
To alleviate this organizational uncertainty, the Draft Policy was sought as a means to formalize the CMHF pursuant to provincial legislation. With no other institution responsible for community participation, compounded by a concern that the DHS has neglected the community engagement principles central to the National Health Act, stakeholders emphasized the continuing need for HCs, arguing that “it raises a concern of how seriously we take our very own policies as a government and how serious we are in the implementation of our policies and guidelines.” With growing concern that the continued existence of the CMHF will be threatened where it is not institutionalized under law, stakeholders lamented how the CMHF’s exclusion from the health system might significantly weaken or eliminate a role for community participation:
"If you really want people governing and people having a say, then the structure doesn’t create that. The structure creates a kind of opportunity of engagement, but it’s really dependent on the way we actually do it and the way we engage with it."
As such, many community members fear that health reforms will not adequately allow for community participation, creating a pressing imperative for their efforts to secure implementation of the Draft Policy and thereby formalize the CMHF as a basis for engagement within the DHS.
Not fully addressed in the Draft Policy, there remains complexity in identifying, selecting, or electing community representatives to the HCs. As this problem was identified by a key stakeholder:
"It’s a highly politicized process. In my own opinion, it’s not necessarily the right people who come forward to represent their communities…The people who get elected in my personal estimation, are the wrong people who get elected for the wrong reasons, for the wrong things. And it’s not of their own doing or their own making, but it’s the motivation for stepping forward and being a community participator."
Several stakeholders noted that the lack of clearly defined processes for representation creates an environment in which community representatives do not have a clear relationship to the communities for whom they claim to speak. Emblematic of the limitations to true representation, elections for HC members are frequently forgone in place of direct appointment from the committee chair. In situations in which these members are not elected or selected by standard procedures, engagement with community participation structures may serve only for personal enrichment, with community representation reinforcing existing bases of political and social capital and reflecting nothing more than personal opinion . Rather than representing or understanding their communities, it is believed that several community representatives were motivated strongly by self-interest, volunteering to participate in health committees merely to gain the qualifications necessary to seek future employment and leaving the committee once employed (nominating a family member or friend as a replacement without any additional confirmation). With such processes undercutting efforts to achieve community participation, a stakeholder criticized:
"You know you’re speaking on behalf of a community of people. You have the responsibility and an obligation to that community…and often I find that we are dealing with personalities and I sometimes think, “Who are the voices behind these people and do they even understand those voices?” So how do they actually communicate those needs and don’t paper it with their own personal issues?"
These non-standard selection processes, allowing personal interests to play a role in joining committees and representing interests, can present potential obstacles to representation, denying HCs the impartiality, public spirit, and effective conflict resolution structures necessary for community participation.
As health officials seek to engage with these community representatives, the government lacks a clear vision of how the DHS can institutionally support community engagement to promote meaningful participation in the health system. Reflecting on the relationship between the DHS and HCs, one Department of Health official noted:
"We’ve restructured the structure, but now we’re kind of working out the mechanics of the structure and how the DHS engages and how it works in practice. And part of that has to deal with the community and having a voice closer to management and informing processes. There hasn’t been a lot of energy into really grappling with that."
Despite serving as the main government entity responsible for the provision of health services, the provincial Department of Health has not traditionally held responsibility for building community capacity for participation, with many of these functions undertaken by civil society representatives rather than Department physicians . The Department has been restructured to emphasize Primary Health Care and rights-based community participation; however, the Department leadership comes primarily from medical backgrounds, and stakeholders within the Department noted the enduring limitations of this medicalized workforce:
"The Department at the moment is doctor heavy and comes with the thinking around the way doctors operate and the medical model… The ideology is not developmental. It’s not rights-based. With that kind of culture, I don’t know if we are the right people to do it, even if we had some obligation to support them [community representatives]."
As a result of this organizational culture, it was believed—both inside and outside the Department of Health—that many health officials continue to question whether the Department has the obligation or ability to engage in capacity building to support community representatives. Without institutional support to enable representatives, a stakeholder questioned: “Are we going to wait for health committees to somehow organically develop this capacity or do we actually invest in looking into how to increase capacity in health committees?” With community members voicing frustration with the Department of Health, these community members saw themselves not as partners with the Department but as “watch dogs” of the Department, lacking an ability to participate within the Department’s institutional structures.
Even with the Draft Policy, there remains ambiguity over how the Department might communicate effectively with its constituents, give voice to community representatives, and relate institutionally to community participation structures. As a stakeholder warned, “the whole idea of putting the structure in place was to bring the services closer to people, to have the decision-making processes closer to where the action is happening.. We are going to fall short if we just put the structure in place and we don’t actually stay true to the idea.” As stakeholders seek support for the Draft Policy, it is clear that legislation is only the first step, with institutional support programs necessary to build the capacity and trust of community representatives to participate in the health system.
Beyond building capacity for community participation, HC members often noted the need for administrative training – as defined by communities themselves, but including, at a minimum, basic computer skills, administrative committee procedures, and information on prevailing health issues, DHS bureaucratic functions, and HC participation responsibilities. With this training only just begun, one of the trainers reflected on how training could impact the role of the community representatives in the health system:
"The interesting thing for me was that when we were doing this training that people’s eyes opened. “Yeah that makes sense.” And it was heartening to see that people did understand what’s happening to them, why they were getting sick. Because a lot of the training was around what makes you sick, what makes you better – understand Primary Health Care first before you can understand your role in the Primary Health Care system. People did want to know. People are smarter than people expect. They can work some things out because they are survivors."
Confirming the findings of an earlier study conducted by The Learning Network for Health & Human Rights (Learning Network) at the University of Cape Town , the most common concern of HC members was the need for greater training in community representation and understanding of HC roles and responsibilities.
Yet among officials within the Department of Health, even among those who were otherwise supportive of community participation, there was criticism of training efforts and concern for achieving training goals. As reflected by a key Department stakeholder, “there was a big drive [for training]…but from my side, very little return for the investment.” With Department officials finding that community representatives lacked the professionalized conduct necessary to benefit from administrative training, Department representatives criticized attendees for failures in “respecting people’s time, contacting [Department members], keeping informed, making sure they arrive at the right time, constituting a proper meeting, taking proper meeting procedure… All of that is missing from this process.” While HC members regretted that unavoidable issues (such as access to transportation and prior commitments) had restricted training attendance, limiting the benefits of these previous trainings, these community representatives nevertheless emphasized the importance and success of these trainings.
Such opposing perspectives on the value and impact of training (between Department officials and community representatives) highlight the divergent ways in which the two groups define training success. Because the Department is a large governmental institution that is evaluated on the basis of achieving measurable targets within a limited budget, cost-benefit analysis defines its success or failure; in comparison, community members and trainers may gauge success on factors not amenable to quantifiable measures such as individual empowerment or community engagement . Further, with this administrative training thought to provide a demonstrable impact only once a threshold number of representatives have been trained, the Department would need to scale-up training to see a measurable association between representative training and community participation.
As the health system is reorganized so that management can be brought closer to communities and communities can have a voice in policy, many question the lack of focus on effective community participation in health system management and lack of commitment to engaging HCs under the new DHS. Despite changes in national policy, many of the provincial stakeholders feel ‘stuck’ in the old system and are operating as if no change has taken place. Effectively shifting from a paternalistic medical model to a participation-based model requires a significantly different approach to health and healthcare that has not been addressed in provincial policy. With less attention paid to establishing effective institutions for community participation at the local level, policy reforms have not focused on building and supporting effective HCs. Since the adoption of the Patients Rights Charter and the White Paper in 1997, over a decade passed before stakeholders developed the Draft Policy to institutionalize HCs; and rather than adopting this Draft Policy, the eventual District Health Council Bill extends this lack of commitment to community participation and excludes HCs altogether. Supporting HCs through participatory policy would require investment in: how to mobilize communities to select representatives; how to ensure that HCs meet regularly; how to engage health services management; and how to coordinate communities with management at the local clinic level. Where leaders in the health system continue to neglect community voices, there is a need for effective and engaged policymakers who have a clear understanding of what kind of community participation is required and how such participation can be realized in a way that allows community representatives to become more active members in the policymaking process .
Indicative of this lack of policy commitment to community participation, the Department of Health promulgated new legislation in December 2010 to institutionalize a District Health Council . Excluding a formal basis for community representation, the Western Cape District Health Council Bill defines the new District Health Council structure as including:
a Chairperson, as a member of the metropolitan or district municipal council in the specific health district, nominated by the relevant council;
a person appointed as a representative of the Provincial Minister;
a member of the council of each local municipality within the health district, nominated by the members of the relevant council; and
not more than five other persons, appointed by the Provincial Minister after consultation with the municipal council of the metro or district municipality.
While such a District Health Council could elicit community participation through its authority to “consult with or receive representations from any individuals, organizations, or institutions on any matter regarding health or health services” and to “ensure that appropriate and comprehensive information is disseminated to the local communities on the health services in the health district” , this new legislation never establishes formal structures for community participation.
Without requiring formal community representation under this new policy, stakeholders expect that the establishment of a District Health Council will lead to the dissolution of the CMHF, ending longstanding efforts in the Western Cape to foster formal community participation in the health system. As the Department of Health reviews previous community participation structures in preparation for the establishment of the new District Health Councils, government officials are contemplating the prospective loss of the CMHF, explaining that:
"This is going to be a challenge. Because we’ve legitimized these structures, because we interact with them, because we give them funding. And once a District Health Council comes into being, [the CMHF and sub district foras] have the perception they are legitimate. But they are actually not legally legitimate in terms of the structure. It’s going to call all of this into question."
In the absence of legislative institutionalization, the CMHF and HCs have evolved over time to serve a quasi-official role for community participation in the health system, and yet their future is unclear.
Recognizing that the goals, expectations, and methods of community participation must be clearly defined and formally established to ensure a positive working relationship between the health system and community representatives, policymakers must outline specifically defined objectives, roles, and responsibilities to create mutually-accepted, effective, and legitimate institutions to represent the community’s needs. Through a policy framework for community participation, this new District Health Council can develop a transparent and interactive process by which the community’s specific roles are clearly defined, each representative is perceived as a valid representative of the community, capacity is built for engagement with the health system, and the health system is responsive to community concerns.