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Community Services

Community involvement facilitates recruitment and retention in different research studies and programs. To manage this process MU-JHU has a Community team under the Psychosocial division. This unit includes the Community Liaison Officer and Community Educators.

The team arranges for community meetings, video screenings, media engagements and the development of IEC materials to aid in sensitization activities. To better inform their processes they work with the Community Advisory Board and the Youth Trials Board.

MUJHU Community Advisory Board (CAB)

The CAB was formed in 1998 to provide a stronger link between the community within Kampala, surrounding districts and researchers. By providing a forum for discussion, it seeks to promote research on HIV/AIDS through community mobilization, education and involvement. It is currently composed of religious leaders, study participants, women and community leaders, youth representatives, AIDS NGO representatives and social workers, but membership varies depending on the target of current research studies.

  • To educate communities about HIV/AIDS prevention trials conducted at MU-JHU and MU-WRP sites.
  • To assess community information needs regarding research activities at the sites
  • To discuss community concerns, beliefs and perceptions about research
  • To dispel myths and rumours about HIV/AIDS prevention research
  • To enhance information sharing among the PI’s and the CAB through meetings, training, feedback and real-life experiences

CAB Activities

Program and community involvement

CAB members meet on a regular basis to discuss community concerns and needs as relates to HIV/AIDS research.
Committee members work together with the community to identify barriers to recruitment and retention, as well as catchment areas, mobilization and sensitization.

Serving as an advocate for community and research participant interests, CAB members work for the protection of human subjects in all research projects, ensuring that ethical issues are being addressed properly. The CAB seeks to maintain confidentiality, dispel rumours, and educate communities about research opportunities and programs. Community campaign issues include male partner involvement in PMTCT, early couple counselling and testing and psychosocial support.

The committee also works through conducting focus groups to learn what the community knows about vaccines and fears that might influence their decision to vaccinate.

Community Feedback

Focus groups conducted about HIV vaccines have found that common community concerns about potential vaccines include that they contain a strong strand of HIV, are intended to wipe out Africans and affect reproduction in future. Focus groups found that the community has mixed attitudes about immunization, the majority of women lacked information, and that men determine whether their babies should be immunised.

The focus groups were able to give constructive feedback to researchers, with suggestions to:

  • Educate the community about HIV vaccine trials
  • Ensure that the government is aware that the drug used is safe for the population
  • Access vaccine if it is found effective
  • Provide medical care for study participants

The CAB actively participates in national and international AIDS events, such as the annual World AIDS Vaccine Day and World AIDS Day. The MU-JHU CAB is part of the formation of the National CAB Networking Forum that took place in 2005 in conjunction with MU-WRP, RAKAI, IAVI and the Medical Research Council. The CAB also takes part in regional CAB meetings and NIH sponsored meetings.

Youth Advisory Board

Youth Trial Board (YTB) started in 2018 as a pilot to bridge the gap between researchers and the research participants involved in clinical trials, the challenges they face such that people’s health can be improved as well as their medication.

This project started with nine board members who represented three clinical trial sites namely Makerere University-Johns Hopkins University (MU-JHU) Research Collaboration/MU-JHU Care LTD, Joint Clinical Research Centre and Baylor Uganda. Currently, this project has six members who are spear-led by the YTB coordinator Charles Kiganda and supervised by Dr. Grace Miriam Ahimbisibwe and Juliane Etima (MU-JHU Psychosocial Division Director).

YTB members have regular meetings both physical and online, where they discuss key issues affecting young people involved in clinical trials. Some of the topics discussed at previous meetings include:

  • The definition of a clinical trial
  • The randomization process
  • Consent and assent forms

It conducts stakeholder meetings with key people involved in clinical trials such as research leads, Institutional Review Boards (IRBs) to make sure that young people’s involvement in clinical trials is a priority rather than an option.

YTB hopes to be a voice for the voiceless young people involved in clinical trials both on the local and international platforms through various workshops and conferences. We have created a platform for the voiceless young people involved in clinical trials. It has designed Dolutegravir antiretroviral medication messages talking about the risk of Dolutegravir in pregnancy.

Currently, YTB exists in Uganda, Zimbabwe, South Africa, Russia and UK and we hope that it can be expanded to other countries conducting child and adolescent research.

For more information, contact us at  partnerships@mujhu.org