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. areas. It was felt that approaching the potential members Community engagement is, for example, seen to be of individually was the most respectful and acceptable way value in: the development of more effective and appro- in this community. There is no formal community struc- priate consent processes; improved understanding of the ture for the border population, such as a border “com- aims and forms of research; higher recruitment rates; the mittee” that we could have approached, and there was no identification of important ethical issues; the building of mechanism for formal elections either. In its first year better relationships between the community and re- the T-CAB consisted of 14 volunteer members who were searchers; the obtaining of community permission to identified by SMRU as being independent (non-em- approach potential research participants; and even in the ployees), “representative” of the community, and capable provision of better health care. of fulfilling the role required. There were six women and At the time of its establishment, the CAB had three eight men, aged between 21 and 57 years, with various main goals. The first of these was that after a period of levels of education, most of whom were community training—about diseases such as malaria and the nature leaders and key workers (e.g. village chairman, pastor, and goals of research—members would be able to advise teacher, social worker). All T-CAB members were either on whether a study is acceptable to, and perceived as Burmese, Thai or Karen. Membership was collectively beneficial by, the communities in the region. The second agreed and a secretary was elected to be the rapporteur. was that the CAB would play a key role in advising re- All but one member spoke Karen; most could also speak searchers on the ethical and operational aspects of pro- Burmese, and a few spoke some basic English or Thai. posed studies, including informed consent procedures, To be a member, they had to be literate in their own lan- fair compensation, risks and benefits, and protecting the guage, willing to serve as a volunteer, and not a political confidentiality of research subjects. The third goal was figure. A new T-CAB is established at the beginning of that the CAB would act as a “bridge” between the com- each year; with new members approved by the existing munities and researchers. It would on the one hand pro- members, according to the representative criteria in the vide communities with an opportunity to express views T-CAB charter. on proposed research and to influence and direct research As described in our paper in 2010, there are many aims, and on the other provide a means by which the challenges in setting up a CAB. Some of these relate to researchers might feed back the results of the research to the question of how the relevant “community” is to be the community. The T-CAB was not set up to replace identified. Given the wide range and diversity of reli- existing methods of community engagement but to sup- gious, political, language, and ethnic groups in the region plement it in a more formal way. the question of what constitutes the community and who A series of interviews conducted with the T-CAB may be a community “representative” is both complex members revealed that the goals of the CAB had evolved and politically sensitive. from those set out at the Board’s inception. CAB mem- The 2012 CAB has 12 members aged between 26 and bers felt that in addition to the above goals, they see the 60 years who live in a range of different settings in the CAB as a place to learn and to better themselves. They border area. They are generally seen as more “represen- also feel that through Board membership their responsi- tative” than the first committee. Seven of them live in bilities towards their communities have increased. For villages opposite the SMRU clinics on the Myanmar side example they now see themselves as health educators of the border and five on the Thai side. There are nine and health care workers, and find they are obliged to help men and three women on the CAB, and half of them out in non-health matters including getting travel docu- have served since the CAB was established. There are ments for their fellow villagers. These roles and respon- currently three NGO workers, two teachers, two farmers, sibilities were not part of the original remit of the CAB, two village officers, a pastor, a taxi driver, and a house- but have evolved out of the experience of CAB mem- wife. bership and in doing so pose new challenges for the CAB When the CAB was established, a decision was made as an institution. Because the CAB is in theory inde- that whilst there would need to be a CAB secretary, no pendent, it can evolve in a way that is responsive to the other formal “offices” would be established in an attempt community needs. Supporting the CAB, especially in to create an environment, at least in the meeting room,

Copyright © 2013 SciRes. Openly accessible at http://www.scirp.org/journal/health/ 232 K. M. Lwin et al. / Health 5 (2013) 229-236 where—insofar as this was possible—everyone was equal. or Burmese by a T-CAB member identified at the start of The concern was that were a “chair” to be created, the the meeting as the minute taker (not necessarily the chair most influential members would be elected and other or co-chair). Minutes in Karen/Burmese are handwritten members would be unable to express their own views. and at the end of the meeting, photocopied and circulated The findings from our interviews suggest that whilst the to all members. This avoids the requirement for costly CAB worked reasonably well without a chair, the mem- translations and also ensures that meeting minutes are bers feel more comfortable with a chair and co-chair as available to everyone in a timely fashion. they are more used to a structured committee. Hence from 2011 onwards, the CAB elected a chair and a co-chair. 2.4. Review of Studies Since the CAB has been in existence every SMRU 2.3. Organisation of Meetings clinical study has been presented by the researcher to the The CAB has met formally 33 times (up to December CAB for discussion. The members give suggestions and 2012) since its establishment. It has considered and advise on the ethical and operational aspects of studies: commented on 31 studies during this time. The T-CAB what informed consent procedures are appropriate, how has reviewed a wide range of study types: twelve clinical much information should be provided to potential sub- trials, seven social science projects, five observational jects, how much compensation is deemed fair and not studies (with no medical intervention), five evaluations coercive, and how the confidentiality of research subjects of diagnostic tests, one prevalence survey of a malaria- can be protected, as well as assessing other culturally related genetic condition, and one malaria prevalence sensitive issues as they see fit. study. Meetings are usually moderated by an SMRU staff Advising on the use of locally appropriate language to who sets the agenda before the meeting and sends out the communicate with patients and potential study partici- meeting invitation. The moderator ensures that there is pants is a key function of the T-CAB. Information sheets lively discussion and members get to voice their opinions. for study participants are written in Burmese or in Karen. Meetings typically involve an update of the important These information sheets are reviewed by the T-CAB as issues that occur in the members’ areas, the presentation an independent check that the meanings of terms are of up-coming studies followed by discussion and a re- clear in both languages. Information sheets are typically view of the information that will be provided to partici- built around a field-tested template, as for the majority of pants. The CAB met formally twice in 2008, four times studies the basic ideas of consent do not vary importantly, in 2009 (in 2009, there was fighting and instability along and only study specific terms need to be added. the border), nine times in 2010, ten times in 2011, and The majority of studies conducted by SMRU recruit eight times in 2012. Within T-CAB meetings the discus- participants who attend clinics either with fever, or for sion is normally in Burmese and then translated into antenatal services. Most of the studies discussed by the Karen, with the moderator asking questions of members T-CAB do not represent new demands from participants to check understanding. Thai and English are also used that cause major ethical concerns, but there are some when appropriate. studies that have justified special attention, the following As described in our 2010 paper there have been many are three examples of this. challenges in organising these meetings [8]. Meetings require simultaneous high-quality translation into the 2.4.1. Example 1: Age of Consent main languages spoken in the area: Burmese & Karen. An example of T-CAB deliberations was over the The members are a group, with a wide range of experi- question of the age at which a woman could be consid- ence, from health professionals to those with little formal ered an adult and capable of deciding her own treatment education. Ensuring that all participants can follow dis- choices and whether to participate in research. This pro- cussion takes time, and some areas (primarily informed voked a lot of debate and differences of opinion within consent, and the methods and rationale for research) have the T-CAB. A common view was that even if a woman is been revisited several times in order to make sure that all under the age of 18 if she is married and pregnant then members understand. In the first year, minutes were tak- she is an adult and should be able to decide for herself en in English by an SMRU staff member and then trans- whether to join in studies. Other members felt that the lated into Karen and Burmese. This was costly, time Thai legal age of consent, 18, should be respected and consuming and practically challenging, as minutes could binding even if this was not the social norm for the not be emailed to members (most of whom do not own community. Researchers decided that even though local computers or have e-mail accounts), and could only be standards may be determined more by status than actual handed out during the next meeting. age, that it is necessary to follow national legal guide- Since 2011, two sets of meeting minutes are taken; in lines, even if in the context of the Karen border commu- English by an SMRU staff member and either in Karen nity this means treating someone considered an adult

Copyright © 2013 SciRes. Openly accessible at http://www.scirp.org/journal/health/ K. M. Lwin et al. / Health 5 (2013) 229-236 233 woman as a minor. and initiated by university groups did not provoke any suspicion among T-CAB members and so it is unlikely 2.4.2. Example 2: Compensation that there were other unspoken issues. Considerable de- A study was proposed, which would involve the re- tail about the company and the use of data from the study cruitment of people with glucose-6-phosphate dehydro- was required before the T-CAB felt comfortable that the genase deficiency (G6PD deficiency, a common heredi- research was bona fide. tary condition that protects against malaria but also pre- Since 2011 the T-CAB has provided a formal opinion disposes towards haemolysis) to receive primaquine (a on all studies. In order to ensure that they are not biased, licensed and widely used antimalarial). This required a form is completed after adequate time for deliberations, standby blood donors in the unlikely event that a blood put in a sealed envelope and given to the researchers transfusion was suddenly required. Primaquine is usually after the meeting. The CAB’s opinion about a study is not recommended for people with G6PD deficiency, but now documented and made available upon request to the an effective radical cure of Plasmodium vivax malaria relevant ethics committees. In addition to study-specific (most other drugs cannot prevent relapse) was wanted for ethical issues and operational concerns, the authors noted this population and so dosages and safety needed to be that over the life of the CAB the content of the topics assessed in a highly controlled environment. discussed by the CAB has noticeably shifted to more The T-CAB discussed the risks and benefits of the complicated ethical issues like data sharing and bio- study, and eventually decided that there was a small risk banking. of emergency transfusion among participants to be We have also been encouraging researchers to present weighed against a potentially large benefit to local peo- their results to the CAB, both at a convenient interim and ple if treatment guidelines could be revised to allow an at the end of the study, as a way of providing feedback to effective drug for vivax malaria to be widely used. the community. This is over and above the feedback However, the requirement for standby blood donors gen- given to an ethics committee, who usually just get simple erated intense debate over what could and could not be reports annually and at study close out. expected of community members, and whether this crossed a threshold at which payment should be made to 2.5. Capacity Building compensate for the time and inconvenience demanded. In addition to reviewing proposals for research, CAB This was the first time compensation for non-study meetings also provide training opportunities for T-CAB patients had been discussed—in this case these were members in areas relevant to the discussion. To be able standby blood donors. to offer advice the T-CAB members need a minimum It is hoped that the T-CAB can now be a key part of level of knowledge of the specific issues relating to re- drawing up a blanket policy on payments to study par- search methodology and of the diseases and drugs being ticipants, to achieve consistent standards between studies. studied at SMRU. The Karen, who make up most of the There is a real dilemma as there are various international border population, are one of the most persecuted mi- sponsors of studies and they have differing policies on norities in the region, and apart from NGO-run schools remuneration. The credibility of a community agreed there is limited access to education. Although the CAB position would help insist on consistent guidelines when members have a higher than average level of education dealing with sponsors. in the community, most of them have little or no knowledge of medical research or formal ethical concepts. In 2.4.3. Example 3: Concerns around Drug the beginning we focused on the following themes: Company Led Research vs. University Led types of malaria, its epidemiology, treatment and the Research current knowledge gaps; tuberculosis; HIV/AIDs; and Rapid diagnostic tests (RDTs) for the diagnosis of the challenges of obtaining valid informed consent. malaria can help facilitate rapid, effective treatment. This In 2011-2012 topics included more complex subjects is particularly important in resource-limited settings. like the history of artemisinin combination therapy for Many RDTs have been developed, and testing their sen- malaria, artemisinin resistance, challenges in antimicro- sitivity and specificity against microscopy in various bial resistance, concepts in medical research including epidemiological settings is important. RDTs are generic research methods, randomised controlled trials, blinding, and some proprietary, and this subject was discussed as a and the role of ethics committees and community en- study of a new RDT was presented. Some members of gagement. Discussions and activities included topics that the T-CAB were concerned that knowledge to be gained are not directly related to specific research projects, but through a collaboration and unpaid volunteers might later related primarily to developing the T-CAB itself. These be withheld by a company that wished to profit form it. workshops allow for an opportunity to look in more ge- Other SMRU studies of RDTs (using similar methods) neral detail at issues surrounding the involvement of the

Copyright © 2013 SciRes. Openly accessible at http://www.scirp.org/journal/health/ 234 K. M. Lwin et al. / Health 5 (2013) 229-236 community in medical research, and at more general where the population is fluid and comprises many over- ethical questions surrounding SMRU and the local po- lapping sub-communities. pulation. Classroom teaching and group work forms the The average CAB member is literate, has basic educa- backbone of training, but where possible this is support- tion, has a better than average job, and is not “displaced”, ed by other teaching methods. The presentation and han- whereas the average community member is illiterate, dling of the equipment to be used is a useful teaching tool. poor, vulnerable and most of them earn daily wages. Visits to study facilities to observe activities, for example What is the “border community” and the sub-commu- guided tours of our microbiology and malaria laborato- nities that it consists of, and how representative is the ries and insectariums, help members to understand where T-CAB of this fluid and hard to define population? What blood samples go and what they are needed for. are the unique ethical challenges when researchers engage with host communities for longer periods? What are 3. DISCUSSION the key success indicators, and how can they be meas- ured? How successful has the T-CAB been, and accord- 3.1. Evaluating the CAB ing to whom? Very little has been published on the evaluation of community engagement, which is surprising given its 3.2. Future Directions importance in the context of international research ethics. The T-CAB is not intended to replicate an ethics Whilst there have recently been some examples of committee or a scientific committee. Its role is comple- published attempts to share experiences in and models of mentary but different from both. The long-established good practice in community engagement, there remains a relationship between SMRU and the populations it serves, dearth of evidence and advice about the development, of which the T-CAB forms an important component, introduction and evaluation of sustainable community combined with the leadership role in the T-CAB of ar- engagement activities, and there have been a number of ticulate local Karen staff, has meant that many potential calls for the evaluation of the many different models of problems that an outside research team might face in engagement. The T-CAB has functioned long enough to establishing new clinical studies are identified and ad- allow some assessment of its performance in relation to dressed at an early stage. The T-CAB is semi-indepen- research, and how it has met the aspirations of the re- dent, i.e. it is not part of the unit hierarchy, and therefore searchers when it was established. What have been the is able to provide a useful and important space for the strengths and weaknesses of this particular approach? discussion of ideas and fresh opinions. It offers an op- What have been the real functions as opposed to what portunity for community members to speak to research- was envisaged? What alternatives might be considered, ers and to SMRU with enhanced authority. The existence and where do we go from here? Although the authors are of the T-CAB also promotes critical thinking among re- clearly not able to offer an unbiased assessment of the searchers wishing to introduce new studies. These re- impact of the T-CAB within the wider community, se- searchers are aware that that they must consider carefully veral lessons have been learnt. how best to explain and justify these in ways that will be The T-CAB emerged from a particular environment acceptable to T-CAB members, who they must address and time. The board has developed from a group of as local representatives charged primarily with safe- strangers drawn from different sub-communities that guarding the most vulnerable, ensuring that research ad- make up the border community. Amongst the members dresses local needs, and respecting the interests and there are many differences in ethnic and political back- rights of potential research subjects. grounds, locations, religion, and legal status; and yet Extensive and continuing training was an important when brought to SMRU every four to eight weeks they factor which made it possible for the T-CAB to engage have formed an effective and functioning group. Al- effectively with SMRU, and the fact that this was possi- though the CAB model was chosen as a way of formal- ble and is on-going is one important advantage of conti- ising community engagement, it is not the conventional nuity in a long-term CAB. T-CAB members needed to CAB model, where a CAB is established for a particular gain experience and develop the skills required to make study or programme, e.g. an HIV vaccine study, for a judgements about which research studies will be rela- fixed length of time in a defined geographical area where tively unproblematic and which will raise substantive the community members are homogenous, at least for the ethical issues calling for in-depth discussion and analysis. purpose of the particular study or programme, and CAB It is the opinion of SMRU too, that the T-CAB has been members are somewhat representative of the community. and continues to be valuable, and that the CAB can very Instead, the T-CAB reviews a wide range of studies, and usefully complement external scientific or ethical review its members are a heterogeneous group of individuals as a way of ensuring that research is informed by genu- who live either side of the porous Thai-Myanmar border, ine community engagement and is conducted to the

Copyright © 2013 SciRes. Openly accessible at http://www.scirp.org/journal/health/ K. M. Lwin et al. / Health 5 (2013) 229-236 235 highest possible ethical standards. of the T-CAB and discuss how the goals, membership It is striking that there has been little research on the and other operational aspects have matured from its be- effectiveness of and challenges associated with different ginnings to its current incarnation. The experience of forms of engagement and little or no evidence base on running T-CAB meetings over several years has created which to base engagement strategies. Against this back- a membership that are now exposed to the ethical and ground, plans are currently underway to evaluate sys- practical issues surrounding medical research. The mem- tematically the CAB over the next year using a combina- bers, the community, and the researchers have all bene- tion of qualitative and quantitative approaches. One area fited in one way or another and we continue to refine so far unaddressed is the view of the local commu- strategies to make it a practical, fit-for-purpose, effective nity(ies). To what extent does the T-CAB serve their and sustainable CAB. needs? Do they know of the existence of the T-CAB? If so do they get feedback from the T-CAB, and are they 5. ACKNOWLEDGEMENTS able to approach the T-CAB about any concerns they This work is funded in part by the Li Ka Shing Foundation. The may have? Wellcome Trust of the Great Britain supports the Mahidol Oxford Tropical Medicine Research Unit and the Shoklo Malaria Research 3.3. Lessons Learnt Unit. MP, PYC, NPJD and KML are supported by a Wellcome Trust The T-CAB has been in existence for almost four Strategic Award (096527). The authors thank the Global Health Bio- years and valuable lessons have been learnt which will ethics Network, Oxford. The authors are grateful to all past and present hopefully help its sustainability. T-CAB members for the dedication and participation in the CAB ac- x Flexibility: the structure and operations of a long term tivities. CAB must be flexible and evolve over time in order

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