Vol.5, No.2, 229-236 (2013) Health
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: phaikyeong@tropmedres.ac
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
Community engagement is increasingly pro-
moted to strengthen the ethics of medical re-
search in low-income countries. One strategy is
to use community advisory boards (CABs):
semi-independent groups that can potentially
safeguard the rights of study participants and
help improve research. However, there is little
published on the experience of operating and
sustaining CABs. The Shoklo Malaria Research
Unit (SMRU) has been conducting research and
providing healthcare in a population of refugees,
migrant workers, and displaced people on the
Thai-Myanmar border for over 25 years. In 2009
SMRU facilitated the establishment of the Tak
Province Community Ethics Advisory Board
(T-CAB) in an effort to formally engage with the
local communities both to obtain advice and to
est ablish a participatory framework within which
studies and the prov ision of heal th ca re can take
place. In this paper, we draw on our experience
of community engagement in this unique setting,
and on our interactions with the past and pre-
sent CAB members to critically reflect upon the
CAB’s goals, structure and operations with a
focus on the practicalities, what worked, what
did not, and on it s future directions.
Keywords: Ethics, Community Engagement;
Community Advisory Boards; Developing Countri es;
Thailand; Myanmar; Global Health; International
There is now a widespread recognition of the impor-
tance of community engagement, for example through
community advisory boards, in guiding the conduct of
clinical research [1]. This is particularly so for research
conducted in developing countries, away from major
hospitals, and for studies that will recruit vulnerable
groups of people [2,3]. Potentially, CABs can play a
number of important roles. These include ensuring that:
the information given to study participants is under-
standable; that the study is culturally acceptable; that
issues of con sen t, conf id entiality, and co mpens ation ( wh ere
appropriate) have been addressed according to locally
acceptable standards; and, more broadly, that the rights
of participants are safeguarded [4-6]. These considera-
tions are particularly important in communities where
norms, standards and expectations are likely to be dif-
ferent from those of the ethical and scientific review
committees that govern clinical research. Most CABs are
ad hoc, short term and are established to inform particu-
lar studies. There is little published experience of “ge-
neral purpose” CABs which have existed for several
years and have reviewed many different studies [7].
The Tak Province Community Ethics Advisory Board
(T-CAB) was set up in January 2009 as an effort initiated
by the Shoklo Malaria Research Unit (SMRU), part of
the Mahidol Oxford Tropical Medicine Research Unit
(MORU), to formally engage with the communities it
serves [8]. The aim was both to obtain advice and also to
establish a participatory framework within wh ich studies
and the prov ision of h ealth care can take place. The hope
was that what is in reality a range of vulnerable and
complex communities could eventually be not just pas-
sive recipients of services, but could identify their own
problems and organise solutions. It was hoped that in a
small way, this process might be supported through the
participation of individuals from the communities in un-
derstanding and planning local medical services and re-
Copyright © 2013 SciRes. OPEN A CCESS
K. M. Lwin et al. / Health 5 (2013) 229-236
search activities.
The Thai-Myanmar border community and the ration-
ale and structure of the T-CAB have been described in
detail previously, and a brief summary with some addi-
tional background is provided below. In this paper we
describe the evolving experience of the advisory board as
it has matured over several years and discuss possible
future directions.
1.1. The Thai-Myanmar Borderline
Population in the Tak Province:
Demographics and History
The Thai-Myanmar border region has been unstable
for several decades. Since the 1980s political conflicts
within Myanmar have forced hundreds of thousands of
refugees to take shelter in Thailand. In addition the eco-
nomic stagnation in Myanmar has driven millions of
migrant workers to the border region and into Thailand
in search of work and healthcare. As a consequence of
these two sets of factors, the political situation in Myan-
mar has shaped the population of the border region, and
recent changes in Myanmar continue to affect it. An es-
timated 2 - 3 million Burman and Karen migrants and
refugees now live in Thailand, and a large proportion of
these have no legal status. The border population is
highly mobile, moving between the two countries and in
some cases resettling to third countries. Major political
changes inside Myanmar have occurred since the estab-
lishment of the T-CAB and the effects of these on the
population in this area over the coming years are uncer-
tain. Health care provision is very limited in the border
areas such as Kayin state (directly across the border from
Tak province). Often people will travel for long distances
to access health care on the Thai side of the border, in-
cluding at clinics run by SMRU.
1.2. Shoklo Malaria Research Unit: Its
Origins and the Ethical Issues Relating
to Research & the Community
Since 1986, the Shoklo Malaria Research Unit (SMR U -
MORU), attached to the Faculty of Tropical Medicine,
Mahidol University in Bangkok, and the University of
Oxford, UK, has worked among the border population to
reduce the impact of multi-drug resistant malaria and
other infectious diseases. SMRU’s focus has always been
on the groups at most risk from malaria: children and
pregnant women. Beyond the serious impact that malaria
has in the Myanmar “displaced” population, there is also
a global dimension to malaria on the Thai-Myanmar
border because the malaria parasites found in this part of
Asia are some of the most drug-resistant on earth and
their expansion and spread is a very real threat (research
has already demonstrated that the most drug-resistant
malaria parasites found in Africa originated in Southeast
Asia) and must be stopped. This is particularly urgent
and important in the “displaced” population living along
the border since there is now evidence that the malaria
parasites in this region have become resistant to the ar-
temisinin combination therapies (ACTs) now at the fore-
front of global malaria treatment [9-11]. The conducting
of research in this setting presents a range of important
ethical issues not encountered elsewhere. Some of these
issues have been discussed previously in relation to this
populat i on [ 12 ,13].
The main SMRU offices and laboratories are in the
border town of Mae Sot. The centre of clinical activities
for refugees is a health care network consisting of a hos-
pital in Mae La refugee camp and five clinics spread
along the Thai-Myanmar border. These facilities are run
by locally trained Karen and Myanmar staff, many of
whom grew up and live locally. Further information on
the structure of SMRU is available at
1.3. Tak Province Border Community Ethics
Advisory Board (T-CAB): Structure &
Since its creation in the 1980s, SMRU has been in-
formally engaging with village and community leaders,
key workers, patients, and their relatives, a process
which over the years has improved the provision of
healthcare and the conduct of research. However, it was
recognised within SMRU that there was a need to estab-
lish a more robust and formal participatory framework
within which discussion of the implications for commu-
nities of research studies could take place. Although all
research conducted by SMRU is rev iewed by at least two
ethics committees: the University of Oxford Tropical
Medicine Ethics Committee (OxTREC, based in Oxford)
and the Mahidol University Faculty of Tropical Medicine
Ethics Committee (based in Bangkok), it was felt a sup-
plementary formal advisory body would add value.
It was in this context that the T-CAB was established
in 2009. Its founding document, the T-CAB charter
(which is available in English, Thai, Karen and Burmese)
describes the operational guidelines and constitution of
the CAB.
2.1. Goals
Although community engagement is promoted as a
marker of good ethical practice in the context of interna-
tional collaborative research in low income countries,
there is no widely agreed definition of community en-
gagement, and the approaches adopted and the justifica-
tions given for its use vary. In addition to its agreed in-
Copyright © 2013 SciRes. OPEN ACCESS
K. M. Lwin et al. / Health 5 (2013) 229-236 231
trinsic value as a way of treating communities with ap-
propriate respect, community engagement is also usually
taken to be of instrumental value in many different ways.
Community engagement is, for example, seen to be of
value in: the development of more effective and appro-
priate consent processes; improved understanding of the
aims and forms of research; higher recruitment rates; the
identification of important ethical issues; the building of
better relationships between the community and re-
searchers; the obtaining of community permission to
approach potential research participants; and even in the
provision of better health care.
At the time of its establishment, the CAB had three
main goals. The first of these was that after a period of
training—about diseases such as malaria and the nature
and goals of research—members would be able to advise
on whether a study is acceptable to, and perceived as
beneficial by, the commun ities in the region. The second
was that the CAB would play a key role in advising re-
searchers on the ethical and operational aspects of pro-
posed studies, including informed consent procedures,
fair compensation, risks and benefits, and protecting the
confidentiality of research subjects. The third goal was
that the CAB would act as a “bridge” between the com-
munities and researchers. It would on the one hand pro-
vide communities with an opportunity to express views
on proposed research and to influence and direct research
aims, and on the other provide a means by which the
researchers might feed back the results of the research to
the community. The T-CAB was not set up to replace
existing methods of community engagement but to sup-
plement it in a more formal way.
A series of interviews conducted with the T-CAB
members revealed that the goals of the CAB had evolved
from those set out at the Board’s inception. CAB mem-
bers felt that in addition to the above goals, they see the
CAB as a place to learn and to better themselves. They
also feel that through Board membership their responsi-
bilities towards their communities have increased. For
example they now see themselves as health educators
and health care workers, and find they are obliged to help
out in non-health matters including getting travel docu-
ments for their fellow villagers. These roles and respon-
sibilities were not part of the original remit of the CAB,
but have evolved out of the experience of CAB mem-
bership and in doing so pose new challenges for the CAB
as an institution. Because the CAB is in theory inde-
pendent, it can evolve in a way that is responsive to the
community needs. Supporting the CAB, especially in
non-health matters, is not SMRU’s role.
2.2. CAB Membership
At establishment, potential T-CAB members were ap-
proached by SMRU staff through personal contact (Oc-
tober 2008) [8]. They were drawn from an existing pool
of key community workers residing in SMRU catchment
areas. It was felt that approaching the potential members
individually was the most respectful and acceptable way
in this community. There is no formal community struc-
ture for the border population, such as a border “com-
mittee” that we could have approached, and there was no
mechanism for formal elections either. In its first year
the T-CAB consisted of 14 volunteer members who were
identified by SMRU as being independent (non-em-
ployees), “representative” of the community, and capable
of fulfilling the role required . There were six women and
eight men, aged between 21 and 57 years, with various
levels of education, most of whom were community
leaders and key workers (e.g. village chairman, pastor,
teacher, social worker). All T-CAB members were either
Burmese, Thai or Karen. Membership was collectively
agreed and a secretary was elected to be the rapporteur.
All but one member spoke Karen; most could also speak
Burmese, and a few spoke some basic English or Thai.
To be a member, they had to be literate in their own lan-
guage, willing to serv e as a volunteer, and not a political
figure. A new T-CAB is established at the beginning of
each year; with new members approved by the existing
members, according to the representative criteria in the
T-CAB charter.
As described in our paper in 2010, there are many
challenges in setting up a CAB. Some of these relate to
the question of how the relevant “community” is to be
identified. Given the wide range and diversity of reli-
gious, political, language, an d eth nic group s in the reg ion
the question of what constitutes the community and who
may be a community “representative” is both complex
and politically sensitive.
The 2012 CAB has 12 members aged between 26 and
60 years who live in a range of different settings in the
border area. They are generally seen as more “represen-
tative” than the first committee. Seven of them live in
villages opposite the SMRU clinics on th e Myanmar side
of the border and five on the Thai side. There are nine
men and three women on the CAB, and half of them
have served since the CAB was established. There are
currently three NGO workers, two teachers, two farmers,
two village officers, a pastor, a taxi driver, and a house-
When the CAB was established, a decision was made
that whilst there would need to be a CAB secretary, no
other formal “offices” would be established in an attempt
to create an environment, at least in the meeting room,
where—insofar as this was possible—everyone was equal.
The concern was that were a “chair” to be created, the
most influential members would be elected and other
members would be unable to express their own views.
The findings from our interviews suggest that whilst the
Copyright © 2013 SciRes. OPEN A CCESS
K. M. Lwin et al. / Health 5 (2013) 229-236
CAB worked reasonably well without a chair, the mem-
bers feel more comfortable with a chair and co-chair as
they are more used to a structured committee. Hence from
2011 onwards, the CAB elected a chair and a co-chair.
2.3. Organisation of Meetings
The CAB has met formally 33 times (up to December
2012) since its establishment. It has considered and
commented on 31 studies during this time. The T-CAB
has reviewed a wide range of study types: twelve clinical
trials, seven social science projects, five observational
studies (with no medical intervention), five evaluations
of diagnostic tests, one prevalence survey of a malaria-
related genetic condition, and one malaria prevalence
study. Meetings are usually moderated by an SMRU staff
who sets the agenda before the meeting and sends out the
meeting invitation. The moderator ensures that there is
lively discussion and members get to voice their opinions.
Meetings typically involve an update of the important
issues that occur in the members’ areas, the presentation
of up-coming studies followed by discussion and a re-
view of the information that will be provided to partici-
pants. The CAB met formally twice in 2008, four times
in 2009 (in 2009, there was fighting and instability along
the border), nine times in 2010, ten times in 2011, and
eight times in 2012. Within T-CAB meetings the discus-
sion is normally in Burmese and then translated into
Karen, with the moderator asking questions of members
to check understanding. Thai and English are also used
when appropriate.
As described in our 2010 paper there have been many
challenges in organising these meetings [8]. Meetings
require simultaneous high-quality translation into the
main languages spoken in the area: Burmese & Karen.
The members are a group, with a wide range of experi-
ence, from health professionals to those with little formal
education. Ensuring that all participants can follow dis-
cussion takes time, and some areas (primarily informed
consent, and the methods and rationale for research) have
been revisited several times in order to make sure that all
members understand. In the first year, minutes were tak-
en in English by an SMRU staff member and then trans-
lated into Karen and Burmese. This was costly, time
consuming and practically challenging, as minutes could
not be emailed to members (most of whom do not own
computers or have e-mail accounts), and could only be
handed out d ur i ng the next meeti ng .
Since 2011, two sets of meeting minutes are taken; in
English by an SMRU staff member and either in Karen
or Burmese by a T-CAB member identified at the start of
the meeting as the minute taker (not necessarily the chair
or co-chair). Minutes in Karen/Burmese are handwritten
and at the end of the meeting, photocopied and circulated
to all members. This avoids the requirement for costly
translations and also ensures that meeting minutes are
available to everyone in a timely fashion.
2.4. Review of Studies
Since the CAB has been in existence every SMRU
clinical study has been presented by the researcher to the
CAB for discussion. The members give suggestions and
advise on the ethical and operational aspects of studies:
what informed consent procedures are appropriate, how
much information should be provided to potential sub-
jects, how much compensation is deemed fair and not
coercive, and how the confiden tiality of research subjects
can be protected, as well as assessing other culturally
sensitive issues as they see fit.
Advising on the use of locally appropriate language to
communicate with patients and potential study partici-
pants is a key function of the T-CAB. Information sheets
for study participants are written in Burmese or in Karen.
These information sheets are reviewed by the T-CAB as
an independent check that the meanings of terms are
clear in both languages. Information sheets are typically
built around a field-tested template, as for the majority of
studies the basic ideas of consent do not vary importantly,
and only study specific terms need to be added .
The majority of studies conducted by SMRU recruit
participants who attend clinics either with fever, or for
antenatal services. Most of the studies discussed by the
T-CAB do not represent new demands from participants
that cause major ethical concerns, but there are some
studies that have justified special attentio n, the following
are three examples of this.
2.4.1. Example 1: Age of Consent
An example of T-CAB deliberations was over the
question of the age at which a woman could be consid-
ered an adult and capable of deciding her own treatment
choices and whether to participate in research. This pro-
voked a lot of debate and differences of opinion within
the T-CA B. A common v iew wa s th a t ev en if a wo man is
under the age of 18 if she is married and pregnant then
she is an adult and should be able to decide for herself
whether to join in studies. Other members felt that the
Thai legal age of consent, 18, should be respected and
binding even if this was not the social norm for the
community. Researchers decided that even though local
standards may be determined more by status than actual
age, that it is necessary to follow national legal guide-
lines, even if in the context of the Kar en border commu-
nity this means treating someone considered an adult
wo man as a minor.
2.4.2. Example 2: Compensation
A study was proposed, which would involve the re-
cruitment of people with glucose-6-phosphate dehydro-
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K. M. Lwin et al. / Health 5 (2013) 229-236 233
genase deficiency (G6PD deficiency, a common heredi-
tary condition that protects against malaria but also pre-
disposes towards haemolysis) to receive primaquine (a
licensed and widely used antimalarial). This required
standby blood donors in the unlikely event that a blood
transfusion was suddenly required. Primaquine is usually
not recommended for people with G6PD deficiency, but
an effective radical cure of Plasmodium vivax malaria
(most other drugs cannot prevent relapse) was wanted for
this population and so dosages and safety needed to be
assessed in a highly controlled environment.
The T-CAB discussed the risks and benefits of the
study, and eventually decided that there was a small risk
of emergency transfusion among participants to be
weighed against a potentially large benefit to local peo-
ple if treatment guidelines could be revised to allow an
effective drug for vivax malaria to be widely used.
However, the requirement for standby blood donors gen-
erated intense debate over what could and could not be
expected of community members, and whether this
crossed a threshold at which payment should be made to
compensate for the time and inconvenience demanded.
This was the first time compensation for non-study
patients had been discussed—in this case these were
standby blood donors.
It is hoped that the T-CAB can now be a key part of
drawing up a blanket policy on payments to study par-
ticipants, to achieve cons istent standards between studies.
There is a real dilemma as there are various international
sponsors of studies and they have differing policies on
remuneration. The credibility of a community agreed
position would help insist on consistent guidelines when
dealing with sponsors.
2.4.3. Example 3: Concerns around Drug
Company Led Research vs. Universi ty Led
Rapid diagnostic tests (RDTs) for the diagnosis of
malaria can help facilitate rapid, effective treatment. This
is particularly important in resource-limited settings.
Many RDTs have been developed, and testing their sen-
sitivity and specificity against microscopy in various
epidemiological settings is important. RDTs are generic
and some proprietary, an d this subject was discussed as a
study of a new RDT was presented. Some members of
the T-CAB were concerned that knowledge to be gained
through a collaboration and unpaid volunteers might later
be withheld by a company that wished to profit form it.
Other SMRU studies of RDTs (using similar methods)
and initiated by university groups did not provoke any
suspicion among T-CAB members and so it is unlikely
that there were other unspoken issues. Considerable de-
tail about the company and the use of data from the study
was required before the T-CAB felt comfortable that the
research was bona fide.
Since 2011 the T-CAB has provided a formal opinion
on all studies. In order to ensure that they are not biased,
a form is completed after adequate time for deliberations,
put in a sealed envelope and given to the researchers
after the meeting. The CAB’s opinion about a study is
now documented and made available upon request to the
relevant ethics committees. In addition to study-specific
ethical issues and operational concerns, the authors noted
that over the life of the CAB the content of the topics
discussed by the CAB has noticeably shifted to more
complicated ethical issues like data sharing and bio-
We have also been encouraging researchers to present
their results to the CAB, both at a convenient interim and
at the end of the study, as a way of providing feedback to
the community. This is over and above the feedback
given to an ethics committee, who usually just get simple
reports annually and at study close out.
2.5. Capacity Building
In addition to reviewing proposals for research, CAB
meetings also provide training opportunities for T-CAB
members in areas relevant to the discussion. To be able
to offer advice the T-CAB members need a minimum
level of knowledge of the specific issues relating to re-
search methodology and of the diseases and drugs being
studied at SMRU. The Karen, who make up most of the
border population, are one of the most persecuted mi-
norities in the region, and apart from NGO-run schools
there is limited access to education. Although the CAB
members have a higher than average level of education
in the community, most of them have little or no knowl-
edge of medical research or formal ethical concepts. In
the beginning we focused on the following themes:
types of malaria, its epidemiology, treatment and the
current knowledge gaps; tuberculosis; HIV/AIDs; and
the challenges of obtaining valid informed consent.
In 2011-2012 topics included more complex subjects
like the history of artemisinin combination therapy for
malaria, artemisinin resistance, challenges in antimicro-
bial resistance, concepts in medical research including
research methods, randomised controlled trials, blinding,
and the role of ethics committees and community en-
gagement. Discussions and activities in cluded topics that
are not directly related to specific research projects, but
related primarily to developing the T-CAB itself. These
workshops allow for an opportunity to look in more ge-
neral detail at issues surrounding the involvement of the
community in medical research, and at more general
ethical questions surrounding SMRU and the local po-
pulation. Classroom teaching and group work forms the
backbone of training, but where possible this is sup-
ported by other teaching methods. The presentation and
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K. M. Lwin et al. / Health 5 (2013) 229-236
handling of the equipment to be used is a useful teaching
tool. Visits to study facilities to observe activities, for
example guided tours of our microbiology and malaria
laboratories and insectariums, help members to under-
stand where blood samples go and what they are needed
3.1. Evaluating the CAB
Very little has been published on the evaluation of
community engagement, which is surprising given its
importance in the context of international research ethics.
Whilst there have recently been some examples of
pub lish ed attempts to share experiences in and models of
good practice in community en gagement, there remains a
dearth of evidence and advice about the development,
introduction and evaluation of sustainable community
engagement activities, and there have been a number of
calls for the evaluation of the many different models of
engagement. The T-CAB has functioned long enough to
allow some assessment of its performance in relation to
research, and how it has met the aspirations of the re-
searchers when it was established. What have been the
strengths and weaknesses of this particular approach?
What have been the real functions as opposed to what
was envisaged? What alternatives might be considered,
and where do we go from here? Although the authors are
clearly not able to offer an unbiased assessment of the
impact of the T-CAB within the wider community, se-
veral lessons have been learnt .
The T-CAB emerged from a particular environment
and time. The board has developed from a group of
strangers drawn from different sub-communities that
make up the border community. Amongst the members
there are many differences in ethnic and political back-
grounds, locations, religion, and legal status; and yet
when brought to SMRU every four to eight weeks they
have formed an effective and functioning group. Al-
though the CAB model was chosen as a way of formal-
ising community engagement, it is not the conventional
CAB model, where a CAB is established for a particular
study or programme, e.g. an HIV vaccine study, for a
fixed length of time in a defined geographical area where
the community members are homogenous, at least for the
purpose of the particular study or programme, and CAB
members are somewhat representative of the community.
Instead, the T-CAB reviews a wide range of studies, and
its members are a heterogeneous group of individuals
who live either side of the porous Thai-Myanmar border,
where the population is fluid and comprises many over-
lapping sub-communities.
The average CAB member is literate, has basic educa-
tion, has a better than average job, and is not “displaced”,
whereas the average community member is illiterate,
poor, vulnerable and most of them earn daily wages.
What are the “border community” and the sub-commu-
nities that it consists of, and how representative is the
T-CAB of this fluid and hard to define population? What
are the unique ethical challenges when researchers en-
gage with host communities for longer periods? What are
the key success indicators, and how can they be meas-
ured? How successful has the T-CAB been, and accord-
ing to whom?
3.2. Future Directions
The T-CAB is not intended to replicate an ethics
committee or a scientific committee. Its role is comple-
mentary but different from both. The long-established
relationship between SMRU and the populations it serves,
of which the T-CAB forms an important component,
combined with the leadership role in the T-CAB of ar-
ticulate local Karen staff, has meant that many potential
problems that an outside research team might face in
establishing new clinical studies are identified and ad-
dressed at an early stage. The T-CAB is semi-indepen-
dent, i.e . it is no t part of the unit hierar chy, and theref ore
is able to provide a useful and important space for the
discussion of ideas and fresh opinions. It offers an op-
portunity for community members to speak to research-
ers and to SMRU with enhanced authority. The existence
of the T-CAB also promotes critical thinking among re-
searchers wishing to introduce new studies. These re-
searchers are aware that that they must consider carefully
how best to explain and justify these in ways that will be
acceptable to T-CAB members, who they must address
as local representatives charged primarily with safe-
guarding the most vulnerable, ensuring that research ad-
dresses local needs, and respecting the interests and
rights of potential research subjects.
Extensive and continuing training was an important
factor which made it possible for the T-CAB to engage
effectively with SMRU, and the fact that this was possi-
ble and is on-going is one important advantage of conti-
nuity in a long-term CAB. T-CAB members needed to
gain experience and develop the skills required to make
judgements about which research studies will be rela-
tively unproblematic and which will raise substantive
ethical issues calling for in-depth discussion and analysis.
It is the opinion of SMRU too, that the T-CAB has been
and continues to be valuable, and that the CAB can very
usefully complement external scientific or ethical review
as a way of ensuring that research is informed by genu-
ine community engagement and is conducted to the
highest possible ethical standards.
It is striking that there has been little research on the
effectiveness of and challenges associated with different
forms of engagement and little or no evidence base on
Copyright © 2013 SciRes. OPEN ACCESS
K. M. Lwin et al. / Health 5 (2013) 229-236 235
which to base engagement strategies. Against this back-
ground, plans are currently underway to evaluate sys-
tematically the CAB over th e next year using a combina-
tion of qualitative and quantitative approaches. One area
so far unaddressed is the view of the local commu-
nity(ies). To what extent does the T-CAB serve their
needs? Do they know of the existence of the T-CAB? If
so do they get feedback from the T-CAB, and are they
able to approach the T-CAB about any concerns they
may have?
3.3. Lessons Learnt
The T-CAB has been in existence for almost four
years and valuable lessons have been learnt which will
hopefully help its sustainability.
Flexibility: the structure and op erations of a long term
CAB must be flexible and evolve over time in order
to continue to be fit for purpose.
Researchers, ethics committees and other stake-holders
must be realistic about what the CAB can do. The
CAB is not meant to replace an ethics or a scientific
committee, rather it plays a complementary role fill-
ing the gaps in the current approval system (SMRU
studies are reviewed by two ethics committees, one in
Bangkok and one in Oxford).
Long term CABs have an advantage over study spe-
cific ad-hoc CABs, as their members can build exper-
tise through training and experience, and are exposed
to a variety of different studies and study designs.
CABs should be adequately funded and should have a
dedicated facilitator(s).
There should be adequate time in meetings for mem-
bers to have in-depth discussions and time to deliber-
ate on topics that concern the members (not necessar-
ily the researchers). Meeting duration and frequency
should be adequate to build group momentum and
group dynamics.
On-going evaluation in one form or another is impor-
tant to ensure that the CAB is still fit fo r purpose and
members are motivated.
Repetition is necessary to improve understanding of
research concepts, specific research studies and ethi-
cal issues.
Social activities in between meetings or after meet-
ings are necessary to build relationships among mem-
bers and between members and researchers.
In this paper we describe the background and rationale
of the T-CAB and discuss how the goals, membership
and other operational aspects have matured from its be-
ginnings to its current incarnation. The experience of
running T-CAB meetings over several years has created
a membership that are now exposed to the ethical and
practical issues surrounding medical research. The mem-
bers, the community, and the researchers have all bene-
fited in one way or another and we continue to refine
strategies to make it a practical, fit-for-purpose, effective
and sustainable CAB.
This work is funded in part by the Li Ka Shing Foundation. The
Wellcome Trust of the Great Britain supports the Mahidol Oxford
Tropical Medicine Research Unit and the Shoklo Malaria Research
Unit. MP, PYC, NPJD and KML are supported by a Wellcome Trust
Strategic Award (096527). The authors thank the Global Health Bio-
ethics Network, Oxford. The authors are grateful to all past and present
T-CAB members for the dedication and participation in the CAB ac-
[1] Emanuel, E.J., Wendler, D., Killen, J. and Grady, C.
(2004) What makes clinical research in developing coun-
tries ethical? The benchmarks of ethical research. The
Journal of Infectious Diseases, 189, 930-937.
[2] Nuffield Council on Bioethics (2002) The ethics of re-
search related to healthcare in developing countries Nuf-
field Council on Bioethics, London.
[3] Tindana, P.O., Singh, J.A., Tracy, C.S., Upshur, R.E.,
Daar, A.S., Singer, P.A., et al. (2007) Grand challenges in
global health: Community engagement in research in de-
veloping countries. PLoS Medicine, 4, e273.
[4] Boga, M., Davies, A., Kamuya, D., Kinyanjui, S.M.,
Kivaya, E., Kombe, F., et al. (2011) Strengthening the
informed consent process in international health research
through community engagement: The KEMRI-Wellcome
Trust Research Programme Experience. PLoS Medicine,
8, e1001089. doi:10.1371/journal.pmed.1001089
[5] Marsh, V., Kamuya, D., Rowa, Y., Gikonyo, C. and Mo-
lyneux, S. (2008) Beginning community engagement at a
busy biomedical research programme: Experiences from
the KEMRI CGMRC-Wellcome Trust Research Progr am m e,
Kilifi, Kenya. Social Science & Medicine, 67, 721-733.
[6] Reddy, P., Buchanan, D., Sifunda, S., James, S. and Nai-
doo, N. (2010) The role of community advisory boards in
health research: Divergent views in the South African
experience. Journal of Social Aspects of HIV/AIDS, 7,
[7] Hyder, A.A., Krubiner, C.B., Bloom, G. and Bhuiya, A.
(2012) Exploring the ethics of long term research en-
gagement with communities in low- and middle-income
countries. Public Health Ethics, published online.
[8] Cheah, P.Y., Lwin, K.M, Phaiphun, L., Maelankiri, L.,
Parker, M., Day, N.P., White, N.J., et al. (2010) Commu-
nity engagement on the Thai-Burmese border: Rationale,
Copyright © 2013 SciRes. OPEN A CCESS
K. M. Lwin et al. / Health 5 (2013) 229-236
Copyright © 2013 SciRes. OPEN A CCESS
experience and lessons learnt. International Health, 2,
123-129. doi:10.1016/j.inhe.2010.02.001
[9] Phyo, A.P., Nkhoma, S., Stepniewska, K., Ashley, E.A.,
Nair, S., McGready, R., et al. (2012) Emergence of ar-
temisinin-resistant malaria on the western border of Thai-
land: A longitudinal study . Lancet, 26, 1960-1966.
[10] Carrara, V.I., Sirilak, S., Thonglairuam, J., Rojana-wat-
sirivet, C., Proux, S., Gilbos, V., et al. (2006) Deploy-
ment of early diagnosis and mefloquine-artesunate treat-
ment of falciparum malaria in Thailand: The Tak Malaria
Initiative. P LoS M edici ne, 3, e183.
[11] Dondorp, A.M., Nosten, F., Yi, P., Das, D., Phyo, A.P.,
Tarning, J., et al. (2009) Artemisinin resistance in plas-
modium falciparum malaria. New England Journal of
Medicine, 361, 455-467. doi:10.1056/NEJMoa0808859
[12] Pratt, B., Zion, D., Lwin, K.M., Cheah, P.Y., Nosten, F.
and Loff, B. (2012) Closing the translation gap for justice
requirements in international research. Journal of Medi-
cal Ethics, 38, 552-558.
[13] Parker, M. (2012) Moral and scientific boundaries: Re-
search ethics on the Thai-Burma border. Journal of Medi-
cal Ethics, 38, 552-558.