A hill tribe community advisory board in Northern Thailand: lessons learned one year on

Abstract

Northern Thailand and its neighbouring regions are home to several minority ethnic groups known as hill tribes, each with their own language and customs. Hill tribe communities live mostly in remote agricultural communities, face barriers in accessing health, and have a lower socio-economic status compared to the main Thai ethnic group. Due to their increased risk of infectious diseases, they are often participants in our research projects.

To make sure our work is in line with the interests of hill tribe communities and respects their beliefs and customs, we set up a hill tribe community advisory board. We consult the members before, during, and after our projects are carried out. This manuscript recounts how we set up the community advisory board and our reflections following one year of activities. Our experience strongly supports engaging with community advisory boards when working with minority ethnic groups in lower and middle-income settings. In particular, we found that over time, as researchers and members familiarise with one another and their respective environments, exchanges gain meaning and benefits increase, stressing the advantages of long-term collaborations over short or project-based ones.

Background

The Chiang Rai Clinical Research Unit (CCRU), part of the MORU Tropical Health Network, was set up in 2013 in the provincial capital of Chiang Rai, Northern Thailand. CCRU conducts research and community projects on infectious diseases prevalent in this province such as scrub typhus [1]. The Chiang Rai province in Thailand is nestled between Myanmar and Laos, with striking lush mountains running north-to-west and fertile fields stretching out east to the Mekong river. For decades, the province has been the cross-roads of peoples and cultures, and is home to several ethnic minority groups. Approximately 20% of the 1.3 million people living in Chiang Rai province are from hill tribe ethnic groups. The main hill tribe ethnic groups are Hmong, Akha, Lahu, Lisu, Karen, and Yao. Hill tribe communities usually live in rural and remote parts of the province. Because of this and due to their relatively low socio-economic status, they are at high risk of infectious diseases and are therefore common participants to our clinical research projects.

Researchers, healthcare workers, ethics committees and others who are not from these hill tribe communities are unable to fully grasp the cultural, moral, and ethical frameworks of hill tribe communities, making it difficult to judge whether our activities are in line with them. In addition, from our own qualitative work, we found that hill tribe members often faced challenges accessing healthcare and understanding research information due to language barriers and uncertain legal status [2, 3]. The hill tribe languages do not have written forms. These barriers lead to inequities in healthcare access and research participation.

To try and overcome these challenges, we established a hill tribe community advisory board (CAB), modelled after the long-standing Tak Province Community Ethics Advisory Board (T-CAB) facilitated by the MORU Tropical Health Network [4, 5].

Main text

CABs comprising of community members, or variants, are the most widely documented structures for supporting community engagement [5,6,7]. The T-CAB, which was established in January 2009, comprises Burmese and Karen migrants living along the Thai-Myanmar border. They advise researchers on health research and health programmes on the Thai-Myanmar border.

Prior to this the establishment of the hill tribe Chiang Rai CAB (CR-CAB), the following activities were undertaken. Firstly, we observed a T-CAB meeting to understand the running of the meeting. Secondly, we conducted in-depth interviews with the T-CAB members and facilitators to understand the main roles of the T-CABs and the challenges encountered. Thirdly, we interviewed hill tribe leaders, healthcare workers, and community representatives in the main district (Mueang in Thai) of Chiang Rai province. Interviewees were selected from villages and primary care units we had collaborated with and where a high proportion of hill tribe communities resided. We started the interviews by explaining the potential scope of a CAB and asked interviewees if they thought it could be useful to communities and researchers locally. We also had a series of internal team meetings to discuss how the CAB would complement our existing community engagement initiatives.

Responses from the interviews were positive. The interviewees helped us identify potential CAB members, providing us contacts of people who had a hill tribe background or worked closely with hill tribe communities and they thought would be a good fit. In line with their recommendations, we invited those who could communicate in one or more hill tribe languages as well as Thai, were able to read, write, and communicate in Thai, and were respected figures in their communities. From the list of potential members, we made a shortlist trying to include the widest-range of roles and ethnicities while maintaining gender balance. We now have a total of fifteen members (a number chosen based on our experience with the T-CAB and other CABs we facilitate, to guarantee sufficient attendees in case of absences yet not enough to hinder productive discussions), from seven ethnic groups (Akha, Lahu, Hmong, Karen, Lisu, Mien, and Thai). Seven are female and eight male, with ages ranging between 42 and 68 years. The individuals originate from several districts within the Chiang Rai province. The distance between their locations and the usual meeting venue ranges from 12 to 83 km. We initially wished to recruit mostly farmers or day labourers from communities but were advised not to, as communication would have been too challenging, i.e. requiring translations to and from each hill tribe language, and throughout the year they would have been too busy with seasonal agricultural work to attend meetings.

Our first meeting was held in September 2023, and we have been meeting monthly since then. Meetings typically last 2.5 to 3 h and are held on Friday mornings, following the advice of our members. They take place in the city of Chiang Rai at the Hill Tribe Museum and Education Center [8]. Meetings start with a summary of the meeting from the previous month, followed by one or more presentations on past, current, or planned studies and related questions to and from CAB members, in this stage CAB members also raise their advice or opinion on presented studies, followed by a coffee break and then a round table where members discuss and share experiences and advice on the various issues (health-related or not) affecting their communities. Questions to the CAB may be general (e.g. “do you understand this project?” “what is not clear?”), or detail-oriented (e.g. if one particular sentence or figure is clear or not, who could be contacted to record materials in Lahu, where can information on a specific disease be found, which medium would be the best to provide health informatiton). Similarly, questions from the CAB related to presented projects projects may be general: (e.g. “after conducting research, where will the results be sent?”; or specifically related to presented projects “can we have access to mental health information or psychological counseling techniques?”; “does Covid-19 vaccine lead to blood clots?”). Meetings are carried out in Thai or Northern Thai dialect with translations to and from English, if presenters do not understand Thai. Because our team speaks Thai, there are rarely communication or language difficulties, but when they arise they are rapidly solved with the help of CAB or CCRU members. At the end of the meetings, details of the next meeting are discussed, followed by a communal lunch. Members are compensated 500 THB (about 14 USD) plus transportation (about 8–14 USD, depending on distance to the meeting venue). This corresponds to the daily wage of a semi-skilled labourer plus the average local cost of fuel to and from the venue.

With each meeting, CAB members and our team got increasingly familiar with each other and more comfortable asking each other questions. Researchers approach the CAB members for advice on aspects of their work; from study design to strategies for result dissemination and, particularly, recruitment and the informed consent process. The critical feedback provided has helped avoid several pitfalls. CAB members ask the opinion of the CCRU team on health-related news, they relay questions their communities have, and ask for advice on how to answer them.

We set up a mobile-phone chat initially intended to communicate about meeting logistics, upload meeting minutes, and CAB-related communications. Over time it has grown into a platform for sharing news, details of events of interest, and health-related messages among CAB members as well as a tool for rapid CAB consultation and asking for advice or support.

Since its launch, the CR-CAB has reviewed and suggested changes to the participant information materials for all research conducted by CCRU, including some studies from other parts of the MORU network. For example, they noted that using teaspoons to indicate the amount of blood drawn in studies, as recommended by Western and Thai ethics committees, is not appropriate because hill tribe communities do not normally use teaspoons. The members also aided in developing a communication strategy to convey sensitive hepatitis B and C laboratory results to 1,405 participants of a household survey. Additionally, the members helped identify 15 individuals who speak five non-Thai languages to be contacted as translators or interpreters for future health research. They also assisted in coordinating the translation of a video that will be used to explain a clinical trial to potential participants. With the help of the CR-CAB, culturally inappropriate or insensitive language and concepts, as well as examples communities could not understand or relate to, were avoided. The CAB reviewed the questionnaire for a mental health project to be carried out in 48 schools near the Thai-Myanmar and Thai-Laos borders. The members suggested alternatives for terms their communities would struggle with, recommended incorporating instructions before certain sections or questions, proposed formatting and question-order edits, and highlighted that in hill tribe communities, the family head may fill out forms for their family members. They also stressed the importance of feeding the survey results back to the communities, as this is usually not done. A tabular summary of the meeting topics, CAB feedback, and news from communities are given in Table 1.

Table 1 Summary of presentations, discussions, feedback provided, and community concerns reported by CAB members at each of the CAB meetings

The CR-CAB activities are being evaluated through self-administered questionnaires completed by members after each meeting, as well as through informal discussions and team debriefs. In the questionnaires, members rated the topics presented as very important (highest level of a three point scale) for their community 79% of the time and quite important (middle level of a three point scale) 21% of the time. When asked to estimate what they had learned, 89% of respondents selected “a lot” (corresponding to the highest level of a three-point scale) and 96% stated that they planned to share their new knowledge with others. Aside from formal evaluation, the topics that elicited most interest were related to COVID-19, childhood obesity, and mental health among school children.

Attendance at the time of writing averages 78%, despite some members having to drive almost an hour each way to attend meetings. To date, none of the initial members have left the CAB. All those who attended the meetings as presenters and observers said the experience would benefit their future work and they expressed interest in attending other CAB meetings in the future. Of those presenting studies yet to be implemented or specific questions relating to ongoing studies or other procedures, all adapted their strategies or documents as advised by the CAB. When asked what they appreciated the most, learning about the culture and practices of the ethnic groups and the challenges they face was listed by 80% of presenters.

CAB members appreciated learning and sharing about health issues in other parts of the district, gaining more knowledge about infectious diseases and their prevention, research projects and their benefits, and relaying the information to their community; they also suggested directing future efforts to mental health, climate-related diseases, and non-communicable diseases.

We encountered some difficulties in establishing and implementing the CAB. Explaining the potential roles and functions of a CAB to prospective members was challenging, as the concept was unfamiliar to them. During the first few meetings, when members were not yet well-acquainted, facilitators had to make considerable efforts to encourage participants before obtaining feedback. Members also needed time to familiarize themselves with research concepts. However, these obstacles gradually disappeared over time. Also, the members of this CAB cover roles of relevance in their communities, and are not farmers or labourers, who represent the majority of the population. This choice was made to ease communication at the meetings, as minority ethnic groups with less educated backgrounds are unlikely to speak Thai. However, we need to recognise the risk of elitism which may be exacerbated by belonging to the CAB, which could lead to members eventually not being able to adequately represent their communities and compromise the CAB’s function.

Another challenge we are mindful of, is the risk of members developing views close to those of the researchers or feeling pressure to agree with researchers, leading to a lack of independence [9]. To minimise this risk, we are keeping the CAB as a long-term core activity rather than one funded from any specific project and are trying to keep team members responsible for CAB activities independent from those leading and carrying out clinical research, who usually attend as presenters or guests and do not hold any official positions.

As we aim to run community-led projects, we will also need to find the right balance between providing sufficient training to ensure ethical standards are followed, maintain the independence of the communities, and make sure CAB members are not instrumentalised to mirror the interests of researchers.

Despite these challenges, we have found that the CAB has proven to be an invaluable tool, not only for improving communication with participants but also for better understanding the health concerns of communities and the challenges they face in everyday life. It helps us put our work into perspective and regularly reminds us of our duties as researchers to the communities we work with, ensuring that we align with their needs and share our findings appropriately. In contexts where language, geography, or logistics create distance between researchers and communities, CABs serve as a means to meet and socialize in an informal setting where power dynamics are more balanced. After the initial work required to establish the CAB, the resources needed are minimal compared to the benefits.

Conclusions

Our experience shows that time and sustained interactions are key because community members cannot be expected to advise ‘ad hoc’ on topics they know little of. Researchers have found that these ‘working relationships’ are crucial in engagement with community members [10, 11]. Over time, CR-CAB members become familiar with research, and researchers become familiar with the communities. Mutual respect and connections are built, and accountability, trust, and empowerment grow almost spontaneously. Consequently, the returns on investments in CABs will be exponentially greater the longer the CAB is in operation. We believe that governmental, non-governmental, and funding organizations should prioritize long-term commitments over one-off or project-based community consultations. This is especially important where research literacy is low, as is often the case in low- and lower-middle-income settings.

In the future, we will have to safeguard the independence of the CAB from any research project, including those led by members of our unit, and make sure increasing exposure to research as CAB members will not erode any ties to the communities. We also aim to encourage researchers from other organizations working in the province to consult with the CR-CAB. As a first step, we have informed them that the CAB meets monthly and have invited them to attend our meetings as observers. Additionally, we plan to consult CR-CAB members on health research priority setting, both to inform our work and to benefit other researchers in the region. Including the voices of under-reached communities in this process is rare but increasingly encouraged to address health inequities [12]. Much research has examined the role of CABs in high-income countries but less is known about CABs in low- and middle-income countries [7]. We will share our experiences from engaging with the CR-CAB, particularly with other CAB facilitators in low- and middle-income settings who may encounter similar challenges.