'Community Advisory Board is a bridge between researchers and community'

Shobha Shukla and Bobby Ramakant, CNS
Engaging communities genuinely in scientific research and keeping them updated is of paramount importance to ensure that ethical issues are addressed as science moves ahead. The Community Advisory Board (CAB) plays a very crucial and important role in involving the community with the actual implementation of any clinical study. In an interview given to Citizen News Service (CNS), Dr Suwat Chariyalertsak, Director of Research Institute for Health Sciences (RIHES), Chiang Mai University, told that the Chiang Mai site in Thailand has two CABs-- the prevention CAB (for MTN017 study) around HIV prevention research and the treatment CAB (for HTPN 052 study) for treatment related research.

Dr Suwat Chariyalertsak-led RIHES has been acknowledged globally for excelling in clinical trial management. HIV Prevention Trial Network (HPTN) has recognized RIHES and awarded it for best retention, community involvement, and laboratory performance, in the past years. RIHES has also received awards for best recruitment of study participants. CNS team witnessed active engagement of not only key populations such as men who have sex with men (MSM) and transgender people around RIHES centres in Chiang Mai but also met CAB members to learn more about their experience of involving community in scientific research.

CNS spoke to CAB Coordinator and also to a member associated with MTN017 study, which is a phase-II extended-safety study of a rectal microbicide which has begun since February 2014 in RIHES, Chiang Mai University site. Rectal microbicides - in the form of gels or lubricants - are products that are currently under research and are being developed and tested to reduce a person's risk of HIV or other sexually transmitted infections from anal sex. The risk of becoming infected with HIV during unprotected anal sex is 10 to 20 times greater than unprotected vaginal sex because as the rectal lining is only one-cell thick, the virus can more easily reach the immune cells and infect them.  [CNS update on MTN017 of June 2014 is online here]

Members of the CAB for MTN017 include people living with HIV (PLHIV), representatives of MSM and transgender networks, people from the community like the village heads, public health officer, Buddhist and Christian religious heads like monks and priests, University and College teachers, lawyers, broadcast journalists among others.

Representatives of two major networks of MSM and transgender people are actively engaged with CAB of MTN017. Caremat (Care for men and transgender living with HIV) which is represented on CAB, helps MSM and transgender living with HIV in Chiang Mai with counselling, and helping access HIV treatment, care and support services. Another MSM and transgender network in Chiang Mai, MPlus, is also represented on CAB of MTN017. MPlus works with young MSMs and transgender and young MSM and transgender sex workers.

Wipada Cheewawat, CAB Coordinator
Wipada Cheewawat, is the CAB coordinator of the MTN017 study. Wipada keeps CAB members informed about the study and also educates the staff to do to the study as per the regulations, following the study protocol. She shared with Citizen News Service (CNS) the importance of having a CAB in any study. She said that, "The CAB acts as a bridge between the researchers and the community. It is important to understand the viewpoints and perspectives of the community people regarding the study. So we meet the community, talk with them, help them understand the study and take suggestions from them. It is like having a participatory collaboration with the community, which is very important since the study is done for them and with them. We should not be doing anything which the community does not understand or does not agree with. They should know why the study is important for them and what would be the good or bad effects of the study on the community and the participants. As our CAB members come from different groups/parts of society, we get to know and share viewpoints of a diverse range of people."

The CAB in Chaing Mai functions in a manner to ensure meaningful and continuous participation of the community. In the CAB meetings held regularly once every two months, the CAB members are kept updated about new and ongoing clinical trials. For the ongoing MTN017 study, updates are presented so that all are informed and aware of what is currently happening in the study; feedbacks from the members are taken on what the community thinks about the study-- their problems and concerns if any. Periodical training of CAB members is also done and once every three years they go on a retreat. There is collaboration between the 2 CABs in Chiang Mai and the CAB in Bangkok at Thai Red Cross (TRC) site.

Dr Suwat informed that the CAB also publishes a newsletter in Thai language once every 2 months. 4000 copies of every newsletter are printed and distributed in 5 provinces around Chiang Mai at the village and sub-district level. He said that, "This newsletter is in Thai language and gives information about HIV research updates from not just our RIHES site but from around the world, interviews of CAB members, among other things. We publish regular updates on clinical trials to keep recipients up to date on information, especially the high risk groups. Likewise we published information around MTN017 to advertise and to inform people, and when people, especially men who have sex with men (MSMs) and transgender (TGs), read it, they contacted us for further information. Sometimes we also disseminate small posters with the newsletter for the recipients to exhibit at clinics or hospitals in their community. When our staff at RIHES visits regional or global HIV science events we request them to write an update in a simple manner in Thai language and include it in our CAB newsletter.”

CAB members are not only updated at every meeting, but also kept involved all through the study (how the trial is proceeding, are there any problems faced by participants, etc) so that they can ask about any issue and clarify their doubts. Constructive and healthy criticism by CAB members is also important as it helps them get in-depth knowledge about the study and address key concerns - its benefits and importance, the standards of care for study participants, the possible side effects and how they will be taken care of by the researchers.  

Sometimes there are concerns about issues around social harm. For example, in one clinical study, parents of a study participant became concerned when they saw that the study product (PrEP) used in the study was otherwise used for treating PLHIV. Then it was only CAB members who had to explain and counsel them that PrEP (Pre Exposure Prophylaxis) is for HIV prevention although the drug used in PrEP is also used as part of antiretroviral therapy to treat HIV. The role of CAB to address concerns that may arise in the community about research is also vital.

Rathchadet R, CAB member
Rathchadet Reankhomfu (Louis), Project Manager, Caremat, who is also a CAB member, was very appreciative of the information sharing at the CAB meetings. He told CNS that, "In these meetings I get updated about clinical trials that are happening not only in Chiang Mai but in any place in the world. The CAB newsletter in Thai language is very helpful as it gives study updates from other parts of the world too and, as my organization works with MSMs and transgender people, these updates are very helpful for them also. I also get a chance to be critical about a new upcoming trial—whether it is good or not good for the participants or how they will be taken care of in the study.”  

“Caremat had a chance to do some outreach activities with MSMs and transgender where I shared information about the MTN017 study which I had got through attending CAB meetings. Most of them were very excited about a possibility of a gel that will protect them from HIV. They wanted to know where the trial is going on, how the drug is applied, and when it will be available. Even though they were told clearly that there is no rectal microbicide as yet, the concept of putting HIV prevention drug into the gel was exciting for them. They wanted to follow the study updates and we gave them our study brochure. We also make all efforts to convince them to use existing HIV prevention methods while the rectal microbicides study moves ahead. Rectal microbicide gel is maybe for the future but not for now, and we should use existing HIV prevention options to protect ourselves from HIV and other STIs.”

CAB has helped the MTN017 staff in making the study participants understand fully about the study so that they are full and willing partners in the process. There is mutual trust between study staff and study participants. "There is no coercion whatsoever at any stage and so retention rates of participants enrolled in the study are very high at the Chaing Mai site" said Wipada.

Also read:

Shobha Shukla and Bobby Ramakant
Citizen News Service - CNS
9 June 2014