Scientific Papers

From disease- to people-centred pandemic management: organized communities, community-oriented primary care and health information systems | International Journal for Equity in Health

Strong community networks experienced in health education, a local philosophy of mutual aid, communication between health authorities and the population, sufficient human resources at the primary health care level, trust in the government and financial support seem to be factors present in countries that reported low mean excess mortality rates for 2020 and 2021.

In the literature, an increase in democratic governance [16] and in community involvement in decision making [13, 21, 22] were associated with a decrease in excess mortality, whereas higher levels of trust in government were associated with a higher compliance with proposed COVID-19 preventive measures [22, 23].

A strength of this study is the ability to use all-cause deaths compared to previous years to assess the impact of COVID at the ecological level, albeit this was based on the assumption that registration of deaths remained the same notwithstanding the social disruption seen in countries with the highest excess mortality. Limitations of this ecological study are the incompleteness of the countries that could be included and the lack of an in-depth description of the pandemic response per country, making it necessary to interpret the findings with caution. The inclusion of all possible confounding factors falls outside the scope of this study, which aimed to describe the elements related to people-centred care. For some countries like Togo, even related to this strategy, very little has been published and an in-depth analysis would be an important contribution to existing knowledge.

Tailored local people-centred strategies

The experience in Togo, Kenya, Mongolia and Thailand suggests that in country settings or populations where trust in the government is low, local strategies, involving local leaders and understanding local beliefs, can help address rumours and misinformation [24, 25]. The impact of the absence of such strategies can be seen for Peru, Ecuador and Bolivia, leading to high levels of excess mortality amidst a socio-political crisis and initial neglect for the role of primary health care [26, 27]. Local strategies are especially relevant for socio-culturally diverse populations, or in times of internal conflict or war as well as for specific vulnerable populations within countries.

A similar strategy was used in Ireland with Irish Roma, a population distrustful to the rest of society, and traveller groups’, people without a fixed abode, organizations. The goal was to minimise the widening of existing health inequity through a community-health partnership with primary healthcare professionals trusted by these populations. Beside communication tailored to the culture (norms, beliefs, and values) and literacy needs, they successfully advocated for public health measures like access to water and sanitation, financial and logistic support and prioritized access to COVID-19 testing. This project levelled access to health care and reduced COVID-19 exposure in this population [25].

The potential of involving people in reducing the impact of a health crisis calls for a debate and a scientific assessment on the need to integrate contextual knowledge or the people´s knowledge systems in health service and health system management [9]. If we look at a health problem like COVID-19 with a narrow medical lens, the health sector creates an expensive best-care practice for individuals, driven by pharmaceutical actors that see the pandemic as an opportunity for short-term profits [28]. This is neither affordable nor acceptable for a large share of the world’s population. A start is being made for inclusive initiatives within the Coalition for Epidemic Preparedness Innovations (CEPI), a global partnership between public, private, philanthropic, and civil society organisations launched in 2017, to develop universally accessible vaccines and other biologic countermeasures against epidemic and pandemic threats [29].

Interconnectedness versus individualism

The strict respect for individual freedoms and rejection of measures focusing on the common good in western countries is particularly ill-suited to the management of global threats. Individualism leads to divergent views, including the disruption of social norms in countries like the UK, Canada, Australia, and the USA. The absence of a shared social ethic weakens communal bonds and impacts individual stress, frustration, anxiety, confusion, and powerlessness [30]. Insight into the unsustainability of the prevailing individualism of Euro-American countries, where the individual improves his own life with little regard for the future, is growing. The more individualistic people were, measured by the weight they give to their personal interests rather than their in-group’s interest, the higher the chances they would not adhere to epidemic prevention measures [31].

The need to put interconnectedness central in health was identified during the High-Level Commission, ‘40 years of Alma Ata’, with the term “mutual care”. This concept includes, beside people as individuals, families and communities, the health and social care workforce, and the environment at large [32]. This wisdom on the balance of a person with others and their environment originates from ancient cultures across the globe. The African concept Ubuntu, the essence of being human, translated incompletely as “in existing with and through others”, reflects interconnectedness in the present, the past and the future; my life affects not only now but also in the future the lives of others [33]. In Bolivia, this is described through the words “to live good” (“buen vivir”), a translation from the Aymara expression “Suma Qamaña” or “Sumaq Kawsay” in Quechua or “Ñande Reko” in Guarani, a literal translation of “being whole”, to live with beauty and harmony. The well-being comes from the understanding that our existence is related to the world; we do not only depend on Mother Earth or Pachamama but are also part of it. For the Sumaq kawsay the relationship and balance an individual has with the community and the natural environment is fundamental. They therefore urge communities to organize themselves and function in a way that the whole community benefits, to achieve a satisfactory life, to promote community life, sharing and caring for each other as part of life systems that promote reciprocal care. The Pachamama (mother earth) is not seen as a resource to use without limits but as a living creature with whom we must learn to live in harmony; if we destroy our environment, we destroy ourselves. Healthy food, healthy water, and healthy air are the main natural remedies that preserve human health; if Mother Earth is healthy, we are healthy. “To live good” means being complementary and living together in solidarity without excessively competing with one another and the natural environment [34].

Interconnectedness has been the basis of many pandemic experiences in Latin America. In Chile, the Journal of the Association of Family Physicians (Revista Chilena de Medicina Familiar) published a special issue on person- and community-centred experiences [35]. In Mexico, this experience is reflected in “self-help groups”, where people share their strategies and knowledge in the management of their diseases, with a proven benefit to treatment adherence and user satisfaction [36]. In Peru, the oldest and best-documented experience is the program “the life reform” and the health circles from the largest social health security system (EsSalud), where some workers in median and big companies were formed as health promotors to supervise and promote a healthy life for their colleagues [37].

Proportionate Universalism through community oriented primary care

People have a central role in disease prevention and health promotion through self-care backed up by adequate health literacy and a supportive environment [38]. As such, the initial solution proposed in many countries, predominantly virus- and biomedically-focused, like new pharmaceutical products, vaccines, and national Test-and-Trace programmes, was incomplete. It de-emphasised the diversity between people, their organization and their potential in helping tackle the pandemic. Building structures that promote continuous community engagement to mitigate current and future healthcare crises, including lifestyle diseases, requires a health system based on primary healthcare. A primary healthcare organized in a way that facilitates a structural collaboration between the population and the healthcare team [39]. This was proposed in Alma Ata [40] and piloted in the framework of Community Oriented Primary Care (COPC) since the 1940s in South Africa, where its development was hindered during the height of apartheid [41]. The initial global pandemic directions underestimated the role of primary care as a trusted information source and as an expert in local social and health needs [42].

For COPC to be effective there are preconditions related to the communities as well as to the health care organization. To work with and engage communities, legitimate representatives and a clearly defined goal facilitate engagement. These representatives can form a health committee at the level of the primary care service to analyse prominent health problems and identify how to address their underlying causes [43]. The primary healthcare and community-driven health pathways need collaboration and coordination within the health sector, and with other sectors like social services, employment, education, and basic services like water and sanitation. At the primary care level, a clearly defined practice population and incentives for community engagement, health promotion and disease prevention are necessary. Putting primary health care and communities central to future health care crises can facilitate a locally tailored response that takes the level of need or disadvantage in a population into account [44].

Public health and primary care play a central role in tailoring the pandemic response to people´s needs [30]. Understanding health related to social, cultural, economic and environmental factors is crucial. These factors are known as the social determinants of health, and they provoke the unfair and avoidable differences in health status seen within and between countries [44]. Ignoring these factors through a one-size-fits-all isolated health system and disease-focused response is unlikely to be effective nor inclusive when attempting to cope with a public health emergency. Social determinants of health tended to deteriorate during the pandemic, including early childhood development, education, food security, social inclusion and openness to diversity [45]. A refocus on community-oriented primary care is crucial as it takes these factors into account. Involving well-informed communities and their social determinants in pandemic preparedness and rapid response strategies is essential to reduce, or at least not exacerbate, existing health inequities [46].

The role of technology to support public health, people, and health services

Technology can facilitate the identification of vulnerable populations, social determinants of health and health problems through data measurement and sharing. If equity is not explicitly addressed, healthcare responses can unwillingly exacerbate health inequalities.

In 2008, health care improvement was described by Berwick and colleagues as the triple aim: improving population health, enhancing the care experience, and reducing costs, where the aims reinforce one another [47]. In 2014 a fourth aim, avoiding burnout of health care providers, was added as an essential component, and in 2022 the fifth aim, advancing social justice and inclusion. If this last aim is not considered, the risk of standard improvements like an uptake of preventive care through alerts in the electronic health record, can increase disparities for people who do not access care. Actions around the fifth aim could be partnering with community-based organizations to organize screening and vaccination for non-responders of national call and recall systems, working with community health workers to make health education more relevant and acceptable, and communicating strategies to address specific concerns and transportation provision to facilitate access [48].

To tackle health inequity it is essential to invest in its measurement as well as in data sharing between health care and community-based organizations. Data stratified by relevant social categories, including self-reported race, ethnicity and gender identity and data on social needs, and barriers to care, such as transportation, food insecurity and housing [48], assisted in pandemic management. In the UK these data showed how pre-existing racial and socioeconomic inequalities exacerbated COVID-19 health outcomes for ethnic minority populations [1], whereas in Belgium these data enhanced equity by facilitating the organization of a priority-vaccination for those most at risk [49].

Inevitably in many countries, technology, vaccine development and treatment trials received the lion´s share of economic and human resources, at the cost of people-centred strategies and health equity [7]. The singular focus on curative, disease-centred and health service-focused approaches and the under-use of community-centred approaches meant that health systems in many countries remained under insurmountable pressures and some, like Brazil, Peru and Bolivia, eventually collapsed [50]. Conversely, other countries such as Uruguay, invested successfully in less costly public information campaigns and primary health care [21].

A comparison of how primary health care is organized in different countries, including how it adapts to local needs and interacts with the community, through health committees, community health workers or with individuals, needs to be further explored. Elements related to the impact of community-centred approaches during a healthcare crisis need to be studied at the local level. In a global world, individualistic and interconnected population groups are present in most countries in the north and the south, making it difficult to interpret the effect of social cohesion and strategies aggregated to a national or even regional level.

Source link