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The need for multidisciplinary training in health and research ethics in low- and middle-income countries

The development of local capacity to address ethical dimensions of public health research is critical in addressing the significant disease burden shouldered by populations in low- and middle-income countries (LMICs). However, the complex realities of poverty, faltering education systems, poorly resourced health services, political marginalisation, and diverse cultural beliefs can pose significant challenges for developing sustainable capacity in ethics expertise and programmes that meaningfully engage the communities served. Building the capacity of local research teams is needed to empower and engage local populations and to create a more holistic approach to communities that considers the ethical, social, cultural, political and historical dimensions essential for successful public health programming. The ethics training course detailed below represents an approach to social science training that combines international and academic expertise in ethics with local expertise and cultural knowledge for innovative ethics programme development, where current development models are lacking. [1, 2]

The Myanmar-Thailand border, the Shoklo Malaria Research Unit and malaria elimination

As an LMIC setting, the Myanmar-Thailand border provides a prime example of the difficulties in developing a training programme in ethics for local practitioners. From the Thai state’s perspective, mass movement of persons from Burma/Myanmar began in 1984, as ‘persons fleeing fighting’ massed in informal shelters along the border region were permitted entry into neighbouring Thailand through formalised ‘temporary shelters’. [3, 4] The Shoklo Malaria Research Unit (SMRU) began studying multi-drug resistant falciparum malaria in 1986 in the refugee camps housing these displaced persons from Myanmar in Tak Province, Thailand. At that time, malaria, as the primary cause of death and morbidity, was the most serious health problem facing this population. In the process of changing the modern therapeutics of malaria infection, the SMRU – via concerted efforts with local partners – relegated malaria to a rare cause of illness and death among the 130,000 people who now live in the camps. These gains were extended to the predominantly Burman cross-border migrant communities along the border, estimated at around 200,000 migrants, reducing falciparum malaria transmission to nil on the Thai side of the border. Beginning in 2014, an unprecedented coordination of local ethnic health organizations in Eastern Karen/Kayin State, Myanmar, led by the SMRU’s Malaria Elimination Task Force (METF), resulted in the establishment of 1,200 malaria posts coupled with mass drug administration campaigns to greatly reduce falciparum malaria across Karen/Kayin State.

The METF programme has been a hard-fought success. Fifty years of systematic disenfranchisement of Burmese and Karen communities along the border region of Western Thailand and Eastern Myanmar have led to broken education and health systems, greatly limiting local capacity development via multidisciplinary public health training. Community Engagement (CE), the backbone of the METF programme, aimed at promoting local community participation in the border region, quickly discovered that local health workers needed multidisciplinary skills and a firm grounding in social science and ethics to ensure success of the programme for malaria elimination.

Developing a course in ethics

Working with Professor Decha Tangseefa, a political science professor and social science researcher at the Faculty of Political Science at Thammasat University, Thailand, the CE team originally developed a framework for CE that later constituted the ‘9 Dimensions’. [5, 6] This framework grew out of years of social science research among refugees and migrants along the Myanmar-Thailand border, led by Prof Tangseefa, building on three major themes to conceptualize the complexities of this ‘in-between space’: power, place, and people.[7-9]

Following completion of the Targeted Malaria Elimination Programme (TME) and in the course of the METF programme, senior CE Team members reflected and identified their own shortcomings in training on issues of ethics and yearned for a deeper understanding of the multidisciplinary approach needed for successful CE. The CE team and technical advisors to the TME programme met with Prof Tangseefa to develop a course in ethics and social science for local health practitioners that addressed many of the key areas necessary for CE. This was based on a participatory approach, where ‘students’ met with the ‘instructor’ to identify areas where the participants required further instruction. Key areas to be covered in the course included: ethical theory, research ethics, justice, gender and care ethics, human rights, humanitarian intervention, poverty, development, immigration, and globalization and economic justice.

These topics were covered in monthly training modules led by Prof Tangseefa, which included group work culminating in monthly presentations by CE team members over the course of 9 months in 2017 and 2018. Over this time, the course evolved to meet the needs of the local practitioners, most importantly including changes in text befitting the level of training and language abilities of the CE Team members. [10] This nearly year-long process culminated with a short ‘writing course’ to prepare a manuscript for the ‘9 Dimensions’ as used in the TME and subsequently used as a CE guide for the METF Programme. [11-14]

The ‘9 dimensions’ include:

I. History of the people
II. Space
III. Work
IV. Knowledge about the world
V. Intriguing obstacle (rumour)
VI. Relationship with the health care system
VII. Migration
VIII. Logic of capitalism influencing openness and
IX. Power relations.

Ways forward

The course described here is a longitudinal course for ethics and social science training among historically marginalised groups. Most CE team members have completed secondary education, with only a few going on to complete higher levels of education. As alluded to above, they represent a ‘lost generation’ of health practitioners. Time, significant investment, and political will are still needed to develop local capacity for conducting ethically sound public health programmes as a stop-gap measure until the Myanmar health system is itself able to reach marginalised communities along the border. This course represents a ‘bottom-up’ approach that leverages academic expertise to address the needs expressed by local practitioners.

The architects of this course understand that much remains to be done to make such courses in global ethics more sustainable. A full course would allow for ‘reflection’ to adjust the curriculum to meet local practitioner needs, including baseline evaluations to determine goals as well as metrics to ‘grade students’ at the completion of the course. The group work and presentations provided the instructor an opportunity to assess participant understanding of ethics topics covered through didactics, but this could be supplemented with testing through midterm and final exams. Elements of the TDR Global Competency Framework [15] or similar grading schemes may provide a more robust method of assessing local practitioners’ knowledge and skills in ethics, research operations, quality and risk management, and scientific thinking.

However, those who developed this course understand its potential to engender a ‘grassroots’ approach to training in ethics that provides real skills to local practitioners in addressing practical ethical dilemmas as they arise organically in the field. The backbone of both the TME and METF programmes was the CE Team members’ ability to navigate a rugged, culturally diverse, and politically polarized post-war environment to attain and sustain high levels of community participation for anti-malarial mass drug administration. This course further bolstered the sustainability and versatility of the CE team via a multidisciplinary approach to conceptualising health inequities in this dynamic border region. In addition, it will enable local practitioners to cut across disease-specific programming, often dictated by international bodies and donors, and advocate for meeting the broader public health and development priorities of the local communities.

CO-AUTHORS
LADDA KAJEECHIWA, MAY MYO THWIN AND SUPHAK NOSTEN: SHOKLO MALARIA RESEARCH UNIT, MAHIDOL-OXFORD RESEARCH UNIT, FACULTY OF TROPICAL MEDICINE, MAHIDOL UNIVERSITY, MAE SOT, THAILAND

References

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