Micky Hingorani
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We are a multi network site so we don’t have a period when there are no studies taking place. There are a lot of things that we do as cooperate social responsibility. We support Dzama school project where we have built school blocks and teacher houses. We also support with the school feeding program. This school is within our catchment area and it is in a village where we recruit more participants for various studies.
As a site we also take part in national events like World Aids day commemorations and candlelight memorial. We give financial and material support towards these events.
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The CAPRISA team managed to engage stakeholders by educating them, addressing their non trial related needs like building schools. This made them gain more support and trust from the community by indicating that they had more interests in community problems other than research.
The community research groups also enabled them solve issues that were more likely to emerge from community dissatisfaction. more still, the strategies to solve the emerging issues were contributed to by the community members.
We have sustained community interests through;
Outreach activities that sensitive communities about HIV and other common ailments, events that offer HCT services.
MRC/UVRI has built shelters to serve as dispensaries in 2 fishing communities of Bukakata landing site.
Some community based research programs offering house to house follow up on HIV infected persons make community develop more trust in the organisation.
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The CAPRISA approach built trust and confidence of the study population, this helped in the recruitment and retention of participants in the study.
Our site carried out a HIV study in a community and as part of their contribution they noticed that they community had scarcity of water. They provided a borehole water for them. That really made a lot of difference. During the planning stage of the present trial that we are carrying out, we were to the community and they were very interested and have been taking part in the trial and have been coming for their visit.
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Though we have not been involved in the actual implementation of research trials, one thing that has not come out is how this trust is built especially when it is your first time to work in a particular community. In most research studies that have taken place in Zambia, the complaints from the community members is the use of Community Advisory board members that do not reside in the location where the research is taking place. There are instances where the protocol clearly states the involvement of people living in the community where the research is taking place. However, this is ignored and the research team engages people living outside the research site.
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Our site has been has been in place for more than 15 years now and we have been engaging the community using the local existing structures such as Local Government Authorities, community leaders at ward and street levels as well as community based organization and other influential personnel in the community. Fortunately we started with HIV cohorts in general population, whereby there was no much interventions or investigation product and participants were prevailed to have free medical care of minor ailments. With involvement of broader community stakeholder engagements it was possible to gain trust from the surrounding community. In one of the projects our site supported the renovation of health center and dispensaries in the study catchment area and in some facilities the site assisted purchase of laboratory reagents thus increasing trust and mutual respect between the site and community in general.
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Think about the CAPRISA case study highlighted in the online training module for Lesson 9. How did their comprehensive approach contribute to their success and network of relationships created over time? What are some examples of how you have sustained relationships with communities after and between trials?
CAPRISA approach to the community was engaging stakeholders on trial and non trial related issues and they made the efforts to learn the cultural and social factors that impact on research outcomes. They developed trust and had mutual respect for the community and this helped them achieve good outcomes in the CAP 004 trial. They worked within the ethical framework on research implementation and had meetings with the CAB and the relevant stakeholders. They supported the community in non trial related work and discussed issues linked to community needs and not only what the researchers. They also engaged with the department of health and education.
At our research centre, we have sustained relationships by providing training to the community on HIV and non HIV related issues. We have also developed peer educators and they have become the voice of promoting prevention and treatment messages. Post trials, we have continued with community education and provided other study results so that the community may be kept informed about the research field. We have worked in several communities for over a decade as we have build trust and relationships at the ward level. Several of our community staff have roles in the OSS (Operations Sukuma Sake) group which helps meet the needs of the community in the various wards.
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This is a challenging situation,
However i think before conducting the study, the research team and especially the community outreach team should have conducted a focus group discussion with the MSM and other advocacy group members to understand their views and what are the threats around their practices , and what is to expect if they participate in the trial. together they will discuss on strategies to mitigate the harms if/when they happen, since they are the main stake holders in this case.
Additionally is important to engage other authorities /bodies working with human rights and other activists, using information from these discussion the research team should develop a site management plan for the trial.
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Hi Guys,
Sorry for just coming back this late, I had no access to network for some days.
Thank you Jessica , Nokulanga and Charles for your contribution for future trials we are planning to conduct seminars for health care providers in the study catchment area especially about VISP and other basics related to participation in HIV vaccine trial, There was a time we tried to invite traditional healers in our stake holders engagement meetings they did not come, maybe we use a different approach or may be try joining their meeting if they have meeting. I have been also thinking about engaging football clubs at community level, thou is sort of difficult but in guess is possible since most of youths (males) like soccer.
Charles, Thank you for sharing your experience.
Erica
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It is critical that once participants are enrolled in a study every effort should be employed to ensure they complete their study visits. Going forward it would be helpful to implement GPP during protocol development for these anticipated events with stakeholders by developing a communication and issues management plan.
We had a similar incident where participants who seroconverted during the study blamed the site for infecting them and attempted to sue. We engaged the CAB and reached out to participants to allay the fear that their participation in the study will result in HIV infection. This GPP course has now taught us that issues that are anticipated should be planned for in communication and issues management plan.
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When community members protest against poor or lack of services by their local authorities, causing disruption of traffic, attendance of research scheduled events may be disrupted. This type of unanticipated events are difficult to predict and mitigation planned. sometimes it may require the site to plan for additional provision of funds for transport reimbursement since it may force study participant to use longer routes to the site, or participants may need to be rescheduled.
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Jessica I appreciate your input that stakeholder engagement is not limited to time but an ongoing, “live” process. Now the final protocol is with you it has gone through you regulatory process and ready for recruitment. The challenge this poses is that the mother brings this participant to study ques for the process. The mother then goes to another health care provider for her medical attention.
Now because the protocol only provided a budget for treatment of participants for study related harms/injuries and minor ailments, upon consultation can stakeholders require that mothers too should be treated and ask the sponsor to review the budget? How can this be enforced to comply with GPP?
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Community protest has at one point affected our site when there was a crack down by the Government to implement traffic safety rules. The Government was trying to reinforce use of safety belts. This affected the turn up of the study participants for their protocol visits and recruitment of new ones.Majority of the vehicles had not complied with law. The few vehicles that had complied hiked the bus fare of which majority of the participants could not afford. The participants had to be rescheduled depending on their protocol window period.
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In our site the CAB members are usually involved in the consent review processes and give a feedback before the trial is set to recruit.
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Stakeholder mapping has not been taking place in our site. We do involve the CAB members where updates of the upcoming protocols are discussed and their recruitment strategies discussed. The CAB members involve various community representatives though not all are represented.Mapping applies on the recruitment sites e.g. the bar owners.
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I have leant a lot concerning stakeholder engagement and it’s broader perspective in clinical trials. One immediate change that I would wish to implement is the mapping of the stakeholders required in a clinical trial and involving them in all the processes. There has to be a budget for the Community stakeholder engagement. GPP course is empowering us both in knowledge and skills.