Uganda Celebrates 10 years of Community Research

In November, we (I am a volunteer of the Community Advisory Board at the Makerere University Walter Reed Project) celebrated ten years of cross CAB at the 10th annual Cross-CAB network Forum. The cross CAB is when all the CABs of the different institutions meet togather. Thsi was the tenth anniversary, a milestone achievement really.

Dr. Emmanuel Mugisha outlined the why the Cross CAB annual meetings were started, saying it was because the community was inquisitive about research. At the time that they were started the concept was not understood by the high level researchers but there was a common ground which was the community and that is how all the stakeholders started talking.

It was hard to get people to buy into the concept. In Nov 2005, the first Cross CAB meeting was held, ten years later in the same month, November, we held a Cross CAB meeting, thus its sustainable.

He emphasised that research should empower the communities to have power over their health. Research findings should also move to influence public health policies and implementation.

The CAB is an important platform in making people understand that they have to participate in research. He emphasised that participation in research is voluntary.

Dr. Francis Kiweewa: Highlights of his talk: “Stop being consumers of the science but be part of the science.”

• Many studies fail to take place in Africa because people do not want to participate in research maybe because they are not aware, are ignorant or they are confused.
• Taking part in clinical trials is very important.
• Africans need to stop being consumers of science but also contribute to the making of science. He said “many times people ask me has this vaccine been tested on Americans yet?” Dr. Kiweewa said Africans should know that the virus is less in those areas.

Dr. Joseph Ochieng; Highlights of his talk-

A: The first IRB in Uganda was established in 1986. But research ethics has been active for the last 13 years.

• The last revision of research ethics guidelines was last year by Uganda National Council for Science and Technology (UNCST).
• The ethical review guidelines keep changing and being updated. The world over research ethics is new and we are trying to make it a discipline.

B: Role of community representatives; they should be drawn from the community to help the IRB appreciate the proposed research.
They are expected to represent the cultural and moral values of a community.

C: Consent forms; In our community many people do not want to read so consent forms should be short.

• The Uganda culture is a listening culture. The community representatives should advise the IRB to have few pages.
• People should be able to understand the risks in a consent form. Are the risks clearly stated? Adequate informed consent is key. The benefits can come in later.
• The community representatives should be able to bring out the salient aspects of the research to volunteers.
• You cannot eliminate all risks but the best way is put on the table all the harms that the volunteers would be going through when they undergo the research.
• If you do research that does not go to theIRB, there are few journals that will accept it. If the science is bad then the research is bad.
• In research accountability is having a publication.

Adeodata Kekitiinwa: Highlights of her talk:

• Adolescents have the highest mortality rate for HIV in Uganda. Majority do not fear HIV they fear pregnancy most.
• There is a lot of sexual exploitation of adolescents by adults.
• There is a lot of exploitation by the adults because even if you are giving transport refund you are closing one eye for the adolescents.
• The global trend in HIV is declining but among the adolescents it is increasing and they need to be included in research. There is an urgent need to research about HIV in adolescents.
• There is a lot of alcohol and substance abuse among them. It is not because they have HIV that abuse these but because they are adolescents.

A: Informed Consent for adolescents in research;

• Informed consent must be given and should be taken home so that they do not make a rush decision. (24 hours) those with low mental capacity should be given a chance to take longer to consent.
• As we talk about research we have to tell adolescents about the benefits, -tell them about any intervention without mincing words.

B: Rights of Adolescents in research;

• Some adolescents head households but they will decide about which family member will be able to involved in that process. Health workers go wrong when they make their decisions on which family member to participate with adoloscents in the research.
• An adult judgement cannot override the decision of an adolescents- that does not sound African.
• There are some adolescents that head households but legally they are not allowed to consent on their own.
• Research should not be done among adolescents with a low mental state- if they had nutrition issues when young.
• Many adolescents would participate in research just to have the transport refund. In the process the researchers are jeopardising the rights of the adolescents.
• We have issues of adolescents being abused by family members.
• Adolescents even if they head households are not legally acceptable to make that decision to participate in research.

C: Ambience for research venue;

• Institutions doing research among adolescents must be able to have the sensitivity and privacy. The venues were they do research should have the ambience.
• Long waiting time - not conducive for adolescents
• We have started study visits on phone so that they may be able to miss school.
• Mandatory parental escorts in research for adolescents.
• Who deals with them in research must be taken care of, shared confidentiality is shared with the care taker.
• If the adolescent says NO you stop there - do not force them concluded Dr. Kenkiinwa.