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The Practicality and Sustainability of a Community Advisory Board at a Large Medical Research Unit on the Thai-Myanmar Border

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The Practicality and Sustainability of a Community Advisory Board at a Large Medical Research Unit on the Thai-Myanmar Border Vol.5, No.2, 229-236 (2013) Health doi:10.4236/health.2013.52031 The practicality and sustainability of a community advisory board at a large medical research unit on the Thai-Myanmar border Khin Maung Lwin1,2, Thomas J. Peto2,3, Nicholas J. White2,3, Nicholas P. J. Day2,3, Francois Nosten1,2,3, Michael Parker4, Phaik Yeong Cheah2,3* 1Shoklo Malaria Research Unit, Mae Sot, Thailand 2Mahidol Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Mahidol University, Bangkok, Thailand; *Corresponding Author: [email protected] 3Centre for Tropical Medicine, Nuffield Department of Clinical Medicine, University of Oxford, Oxford, UK 4The Ethox Centre, Department of Public Health and Primary Health Care, University of Oxford, Oxford, UK Received 17 December 2012; revised 18 January 2013; accepted 25 January 2013 ABSTRACT 1. INTRODUCTION Community engagement is increasingly pro- There is now a widespread recognition of the impor- moted to strengthen the ethics of medical re- tance of community engagement, for example through search in low-income countries. One strategy is community advisory boards, in guiding the conduct of to use community advisory boards (CABs): clinical research [1]. This is particularly so for research semi-independent groups that can potentially conducted in developing countries, away from major safeguard the rights of study participants and hospitals, and for studies that will recruit vulnerable help improve research. However, there is little groups of people [2,3]. Potentially, CABs can play a published on the experience of operating and number of important roles. These include ensuring that: sustaining CABs. The Shoklo Malaria Research the information given to study participants is under- Unit (SMRU) has been conducting research and standable; that the study is culturally acceptable; that issues of consent, confidentiality, and compensation (where providing healthcare in a population of refugees, appropriate) have been addressed according to locally migrant workers, and displaced people on the acceptable standards; and, more broadly, that the rights Thai-Myanmar border for over 25 years. In 2009 of participants are safeguarded [4-6]. These considera- SMRU facilitated the establishment of the Tak tions are particularly important in communities where Province Community Ethics Advisory Board norms, standards and expectations are likely to be dif- (T-CAB) in an effort to formally engage with the ferent from those of the ethical and scientific review local communities both to obtain advice and to committees that govern clinical research. Most CABs are establish a participatory framework within which ad hoc, short term and are established to inform particu- studies and the provision of health care can take lar studies. There is little published experience of “ge- place. In this paper, we draw on our experience neral purpose” CABs which have existed for several of community engagement in this unique setting, years and have reviewed many different studies [7]. and on our interactions with the past and pre- The Tak Province Community Ethics Advisory Board sent CAB members to critically reflect upon the (T-CAB) was set up in January 2009 as an effort initiated CAB’s goals, structure and operations with a by the Shoklo Malaria Research Unit (SMRU), part of focus on the practicalities, what worked, what the Mahidol Oxford Tropical Medicine Research Unit did not, and on its future directions. (MORU), to formally engage with the communities it serves [8]. The aim was both to obtain advice and also to Keywords: Ethics, Community Engagement; establish a participatory framework within which studies Community Advisory Boards; Developing Countries; and the provision of health care can take place. The hope Thailand; Myanmar; Global Health; International was that what is in reality a range of vulnerable and Research complex communities could eventually be not just pas- Copyright © 2013 SciRes. Openly accessible at http://www.scirp.org/journal/health/ 230 K. M. Lwin et al. / Health 5 (2013) 229-236 sive recipients of services, but could identify their own a global dimension to malaria on the Thai-Myanmar problems and organise solutions. It was hoped that in a border because the malaria parasites found in this part of small way, this process might be supported through the Asia are some of the most drug-resistant on earth and participation of individuals from the communities in un- their expansion and spread is a very real threat (research derstanding and planning local medical services and re- has already demonstrated that the most drug-resistant search activities. malaria parasites found in Africa originated in Southeast The Thai-Myanmar border community and the ration- Asia) and must be stopped. This is particularly urgent ale and structure of the T-CAB have been described in and important in the “displaced” population living along detail previously, and a brief summary with some addi- the border since there is now evidence that the malaria tional background is provided below. In this paper we parasites in this region have become resistant to the ar- describe the evolving experience of the advisory board as temisinin combination therapies (ACTs) now at the fore- it has matured over several years and discuss possible front of global malaria treatment [9-11]. The conducting future directions. of research in this setting presents a range of important ethical issues not encountered elsewhere. Some of these 1.1. The Thai-Myanmar Borderline issues have been discussed previously in relation to this Population in the Tak Province: population [12,13]. Demographics and History The main SMRU offices and laboratories are in the border town of Mae Sot. The centre of clinical activities The Thai-Myanmar border region has been unstable for refugees is a health care network consisting of a hos- for several decades. Since the 1980s political conflicts pital in Mae La refugee camp and five clinics spread within Myanmar have forced hundreds of thousands of along the Thai- Myanmar border. These facilities are run refugees to take shelter in Thailand. In addition the eco- by locally trained Karen and Myanmar staff, many of nomic stagnation in Myanmar has driven millions of whom grew up and live locally. Further information on migrant workers to the border region and into Thailand the structure of SMRU is available at in search of work and healthcare. As a consequence of http://www.shoklo-unit.com/. these two sets of factors, the political situation in Myan- mar has shaped the population of the border region, and 1.3. Tak Province Border Community Ethics recent changes in Myanmar continue to affect it. An es- Advisory Board (T-CAB): Structure & timated 2 - 3 million Burman and Karen migrants and History refugees now live in Thailand, and a large proportion of these have no legal status. The border population is Since its creation in the 1980s, SMRU has been in- highly mobile, moving between the two countries and in formally engaging with village and community leaders, some cases resettling to third countries. Major political key workers, patients, and their relatives, a process changes inside Myanmar have occurred since the estab- which over the years has improved the provision of lishment of the T-CAB and the effects of these on the healthcare and the conduct of research. However, it was population in this area over the coming years are uncer- recognised within SMRU that there was a need to estab- tain. Health care provision is very limited in the border lish a more robust and formal participatory framework areas such as Kayin state (directly across the border from within which discussion of the implications for commu- Tak province). Often people will travel for long distances nities of research studies could take place. Although all research conducted by SMRU is reviewed by at least two to access health care on the Thai side of the border, in- ethics committees: the University of Oxford Tropical cluding at clinics run by SMRU. Medicine Ethics Committee (OxTREC, based in Oxford) 1.2. Shoklo Malaria Research Unit: Its and the Mahidol University Faculty of Tropical Medicine Origins and the Ethical Issues Relating Ethics Committee (based in Bangkok), it was felt a sup- to Research & the Community plementary formal advisory body would add value. It was in this context that the T-CAB was established Since 1986, the Shoklo Malaria Research Unit (SMRU- in 2009. Its founding document, the T-CAB charter MORU), attached to the Faculty of Tropical Medicine, (which is available in English, Thai, Karen and Burmese) Mahidol University in Bangkok, and the University of describes the operational guidelines and constitution of Oxford, UK, has worked among the border population to the CAB. reduce the impact of multi-drug resistant malaria and other infectious diseases. SMRU’s focus has always been 2. EVOLUTION OF THE T-CAB on the groups at most risk from malaria: children and 2.1. Goals pregnant women. Beyond the serious impact that malaria has in the Myanmar “displaced” population, there is also Although community engagement is promoted as a Copyright © 2013 SciRes. Openly accessible at http://www.scirp.org/journal/health/ K. M. Lwin et al. / Health 5 (2013) 229-236 231 marker of good ethical practice in the context of interna- non-health matters, is not SMRU’s role. tional collaborative research in low income countries, there is no widely agreed definition of community en- 2.2. CAB Membership gagement, and the approaches adopted and the justifica- At establishment, potential T-CAB members were ap- tions given for its use vary. In addition to its agreed in- proached by SMRU staff through personal contact (Oc- trinsic value as a way of treating communities with ap- tober 2008) [8]. They were drawn from an existing pool propriate respect, community engagement is also usually of key community workers residing in SMRU catchment taken to be of instrumental value in many different ways.
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