Empowered and Resilient Communities

– A Need for New Perspectives

Mats Målqvist, Uppsala University, Department of Women’s and Children’s Health,
International Maternal and Child Health, mats.malqvist@kbh.uu.se

This workshop will focus on developing a new perspective for both understanding and em-powering local communities in the context of an outbreak of infectious disease.

Disadvantaged and vulnerable groups around the world continue to suffer death, disability and major social and economic disruption from emerging infectious diseases. However, in order to effectively counter health threats like zoonotic disease outbreaks and epidemics in poor communities, the local structural determinants of health need to be taken into consideration. On paper, community participation that assigns ownership and empowerment is widely recognized as a means to alter these social determinants of health. All too often however, there is a poor understanding of the dynamics and culture of the local community and interventions are based solely on time-bound success indicators. This prevents true ownership of behavioural change processes from taking hold.

A deeper understanding of those mechanisms which assign social position and cultural influence in a specific community is needed in successful community participation both for slowly emerging threats and epidemic outbreaks. There is a need for new perspectives!

The focus areas of the workshop are:

•    How can the capabilities and resources of local communities be harnessed?
•    How can such communities be strengthened so that they are better prepared for emerging threats?
•    How can our response systems be adapted so that they can make better use of local knowledge beyond epidemiology?
•    How can continuity in the process of empowering local communities be achieved?
•    How can a balance be reached between the pressures of responding rapidly in a crisis and the time needed for knowledge and behaviour change to take root?
•    How realistic is it to apply anthropological understanding under time-pressure?

The impact of social determinants on health outcomes

Health threats, be they the rise of non-communicable diseases, maternal mortality or emerging infectious diseases, affect the most vulnerable to a larger extent than the better off. This is now well established in the scientific literature and the social determinants of ill health have been thoroughly investigated. The focus on inequity in health during the last ten years has highlighted and given explanatory frameworks for how the mechanisms for this work. Having fewer resources to be able to seek care, to eat healthily, to avoid harmful practices and to pay for adequate care is one explanation. Having the decision-making power that comes with financial resources and education is another. Discrimination and cultural misunderstandings have also been brought up as an explanation for inequity in health outcomes. The Commission on the Determinants of Health (CSDH) has concluded that there is an intricate combination of many things: material, behavioural, psycho social as well as health system factors, the so called intermediary determinants, that mediates the differences in health outcome between different strata in society (1). The CSDH concludes that this is all driven by the social position assigned to people and groups in society. How we value gender, ethnicity, income, occupations and education impacts on how these mediating factors play out in relation to health.
To counter emerging health threats like zoonotic disease outbreaks and epidemics the structural determinants of health need to be tackled since it is the most disadvantaged and vulnerable groups that not only are most affected, but also where momentum of the health threats is greatest. This is evident in the HIV and TB epidemics: diseases driven by poverty and aggravated social conditions. To only focus on the intermediary level will be to address the symptoms and not the causes. Therefore a deeper understanding of mechanisms assigning social position and cultural influence is needed.

Successes of the policy-driven, top down approach

One way to overcome the disparate health outcomes in different groups has traditionally been to work on the policy level. Whether it is imminent public health threats like Ebola or Zika virus outbreak or the increasing level of childhood obesity, the problem at hand is most often addressed with a top-down approach. This is needed in order to change our perceptions of social position and to mitigate the ill effects of the intermediary determinants. Human Rights Conventions’ International guidelines, government policies and regulations, affirmative action policies, health insurance systems and social pro-tection schemes are examples of how perception of social position can be modified and altered. Such vertical approaches have had great success-es in improving public health after the second world war with the eradication of smallpox, wide-spread immunization campaigns, distribu-tion of family planning to mention a few. All in all, these top-down interventions in global public health are heavily promoted and used and could be considered the “Gold standard” for achieving sustainable change.

Community participation: a vital factor for success

At the same time there is a great surge in interest for community-based approaches. The
 Alma-Ata declaration of Primary Health Care for all in 1978 (2), not only stressed community- based clinics but also emphasized the importance of the Community Health Worker (CHW), a topic which was furthermore mentioned at the health conference in Ouagadougou 2008 (3). To achieve lasting changes on the grassroots level, policies and government regulations are not enough. A more in-depth understanding of how health outcomes are generated at the local level is needed, addressing how the structural determinants of health are formed in each local context. As an acknowledgement of this insight, community participation has been highlighted as a key function in global health, and is currently a standing component of all health intervention initiatives. Major funders expect an account of how this participation has been achieved when reporting, and when applying for funds it is usually obligatory to state how community participation should be promoted. But, just as social position invariably determines the health outcome, there are also distinct preferences when it comes to intervention strategies. Large-scale initiatives applied using a top-down approach, are favoured over local
 community-based initiatives. In global health research participatory, action-oriented research methods are still under-developed and under-financed, with less impact than epidemiological descriptions and evaluation of vertical interventions. Financial reporting requirements dictate top-down quantitative set-ups and short funding intervals discourage the continuity needed to strengthen communities and behaviour change processes.

Defining community participation

But what does community participation mean? The Ouagadougou declaration urges governments to:

promote health awareness among the people, particularly adolescents and youth; build the capacity of communities to change behaviours, adopt healthier lifestyles, take ownership of their health and be more involved in health-related activities; and create an en-vironment to empower communities in the governance of health care services in accordance with the Primary Health Care approach (3).

A community-driven approach to improved health thus includes capacity building, behaviour change, lifestyle adoption, ownership transfer and empowerment. Is this really what the global health actors such as major funding agencies, WHO and governments mean by community participation?

Is the bottom-up approach of involving communities actually a feasible and valued strategy? Or is it just a politically correct opinion and a nuisance requirement from funders? How do we deliver on the good intentions stated in Ouagadougou?

The vital role of people’s science in combatting the Ebola epidemic

The eventual containment of the Ebola outbreak in 2014 demonstrated how essential empowerment and ownership are in outbreak situations. It was not until the community became involved in the needed behaviour changes and devised strategies to handle the threat from within, that the outbreak could be controlled. The inability of the global health actors to recognize the vital role of the local community led to much suffering and unnecessary deaths.
In his book ‘Ebola – How a People’s Science Helped End an Epidemic’ Paul Richards explains how this is a striking example of how top-down solutions were favoured by the global community and how little understanding existed of how to harness local capacity among international actors faced with the threat of Ebola (4). Initial responses to the epidemic all bore witness to a generic top-down understanding of what was needed. The health systems were, justly, considered weak, the international interest and investment were accused of being too little too late and the solutions suggested all applied an outsider perspective.

Yet the factors that finally curbed the epidemic were indigenous, starting in the community, and Richards even claims that the top-down strategies actually did harm and sustained the epidemic in the initial phases by being culturally insensitive, spreading information and assigning blame rather than collaborating with the people. It was not until the community perspective was included, as defined by the Ouagadougou declaration, that a “co-production” of the response could start that finally curbed the epidemic. When biomedical knowledge was integrated with local understanding, socially acceptable solutions could be promoted. It was only when “communities learnt to think like epidemiolo-gists and epidemiologists to think like commu-nities” (4) that the response became effective. The initial inability of the global health actors to recognize the existence and importance of people’s science led to much suffering and unnecessary deaths.

Limitations of a top-down strategy when tackling the HIV epidemic

Similarly, the global response to the HIV epidemic that hit southern Africa in the late 1990s and early 2000s was, and still is, to a large extent, driven by a top-down strategy. Much effort has been put into vertical information campaigns, introducing messages of ABC (Abstain – Be faithful – Condomize) that have now more or less been abandoned. Little emphasis was however put on understanding the local circumstances and the cultural dimensions perpetuating the epidemic (5). The challenge has been, and still is, mainly framed within a bio-medical discourse with a vertical top-down approach (6), and the current, newly introduced, strategy of Test and Treat is basically building on the same perspective. All this, despite the fact that it is well established that the cultural underpinnings of the HIV epidemic need to be addressed. Stigma, culturally harmful practices and destructive gender norms are still left unchallenged: issues that can only be tackled by a bottom-up strategy. Just as in the case of the Ebola epidemic, there is a need for behaviour changes that can only be achieved through locally-based motivation to challenge social and structural determinants (7).

Finding new ways to work that harness community involvement

The case of the Upper West Africa Ebola epidemic in 2013–2015 is maybe an extreme example, generated by an extreme disease, but a similar pattern of action and intervention philosophy can be recognised in slower  processes, such as the current HIV/TB epidemic, and more general public health challenges as well. If we are going to be able to decrease inequity in health, which is needed to protect the most vulnerable and thereby create capability and resilience towards emerging health threats, there is a need to find new ways to work with communities. For this to happen, the position and worth given to community knowledge and bottom-up approaches need to change, new structures for financing and accountability are needed and a shift from a medical prescribing perspective to a truly participatory modus operandi is imperative.

References

1. World Health Organization. 2013. Commision on Social Determinants of Health (CSDH): Background 3: Key concepts. [Online]. Available: http://www.who.int/social_determinants/en/
2. [Accessed March 1 2014].
3. International Conference on Primary Health, C. 1978. Declaration of Alma-Ata. WHO Chron, 32, 428–30.
4. WHO/AFRO 2008. Ouagagougou Declaration on Primary Health Care and Health Systems in Africa: Achieving Better Health for Africa in the New Millennium Brazzaville.
5. Richards, P. 2016. Ebola: How a people’s science helped end an epidemic, African Arguments, London, Zed Books Ltd.
6. Merson, M.H., O’Malley, J., Serwadda, D., Apisuk, C. 2008. The history and challenge of HIV prevention. Lancet, 372, 475–88.
7. Hallonsten, G. 2012. Not the whole story. PhD, Lund University.
8. Gupta, G.R., Parkhurst, J.O., Ogden, J.A., Aggleton, P. & Mahal, A. 2008. Structural approaches to HIV prevention. Lancet, 372, 764–75.