Lesson 9 Discussion Question

The Caprisa site invested over time in building capacity within the communities, which proved to be a great basis to build trust, and to truly connect with the local community before a clinical trial starts.

Referring to chapter 3.5 of GPP, a study sponsor could e.g. build a connect with the local Community by providing clinical trial information, long before the study starts, during the trial upon study closure, and ultimately about the study results. Currently we do provide newsletters to study participants with an update about the study progress. The same newsletters could be distributed by the site staff to the CAB members.

CAPRISA’s approach was effective as it included non-HIV related activities that played a huge impact on the community. Community engagement should be addressed with a holistic approach. Many times there are other factors that influence a persons behavior such as adherence to study product or attending study visits. HPTN 073 for instance implement C4: Client, Centered, Care, Coordination. This approached allowed study participants to address their own psycho-social barriers and determinants of health.    Once these were identified participants created their own action plans and deliverable. Following these steps staff at the clinic aligned the patient external resources to assist with their self created action plan.

CAPRISA’s approach to community engagement proved successful because they engendered themselves as part of the community. They built trust with the communities by doing non study related community work that empowered the community and made them part of the community.

At our site, we maintain relationships in the community by Imbizo (meetings) where we tackle different HIV related issues and education. We would get various stakeholders to be a part of them event. EG, we would get guys from GK sport to have some aerobics and boot camp and then educate about the importance of living healthy and looking after yourself, then go into HIV prevention and HIV prevention research.

The CAPRISA Team had great stratergies that helped with the implementation of their research. Their stakeholder engagement activities were on point and were developed. It is important to engage with the community in other aids and not only when you as the site need the community for your research in orderr to build relationships. Recently in our community there was a lot of protests and unrest, matriculants had to be accomodated elsewhere so that their studies would not be interrupted. As the staff in our site we  collected donations amongst our organisation to help with food and toiletries for the students. This was outside our mandate but when working with community you must engage with them in all aspect and needs in order to build trust and strengthen the relationship.

At our site sustaining relationship with stakeholders has been an ongoing commitment, maybe because we have trials after trials, as a result that connectivity is not broken because we touch base with participants from the data base and we use past participants as role models or spokes people in community.  We have had non-research related incidences of fire, riots where we help with feeding and get donations for clothes to help victims as a result we are known in the community. Big Community events with other NGO’s through network or partnership on WAD, Heritage Day, Womens Day, Valentine Day etc. we team up.

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?

Their approach to engaging the community and stakeholders went well beyond trial related issues.  This shows real interest in the well-being of the community and not only a one-sided need in trial matters.  They made the effort to investigate the area’s social and cultural environment which ensured that it wasn’t a misguided effort. By doing this they built trust and mutual respect. And when it came to trial-related activities they followed the correct channels.

As resources in between trials sometimes limit a site to contribute and partake in non-trial related stakeholder activities, sites need to be very creative to be able to still keep stakeholders engaged.  It is also important to remember that keeping a relationship healthy with stakeholders does not always have to mean with a monetary contribution, but the basic willingness to help out in manpower already makes a big difference. So where you can’t give money, give some of your time.

Sustained relationships over time with communities you are doing work with/in is important to establishing credibility and trust–this is important in garnering community support for the work and research being done. Communication and continued engagement of the community helps to sustain relationships and reinforce the established trust in the time between research/trials.

Sustaining relationships with stakeholders (both organizations and stakeholder groups) is something my organization has struggled with–to date, most of our approach to engagement has been one-off and project specific which is a problem when it comes time to start a new project/program–since oftentimes the same stakeholders need to be re-engaged. To address, we are thinking through our approach to stakeholder engagement as a whole for the organization and working to put a formal plan on paper to serve as our standard approach that will be incorporated more systematically to our work. This will include better implementation of evaluation to gauge current/past successes as well as weaknesses and areas that we need to improve upon, particularly in terms of garnering stakeholder input and involvement in our work.

CAPRISA followed the GPP guidelines by involving the stakeholders right from the start and they further worn the study population’s trust and confidence by addressing their needs such as building schools and engaged them in non HIV related activities pre/ post the trial period.

In our site we have not been able to sustain such non HIV related activities and more so post the trial period like the CAPRISA did since the budget is specific to various specific studies within a set up period of time. However the community has benefited from  PEPHAR Program, through HIV prevention trainings, renovation  and equipping of  dispensaries/Medical Centers, HIV care and treatment and mitigation of impact through OVC program.

Empowering the community to own the activities post the trial period can help sustain the relationship in resources limited settings. Ownership will take place if the engagement was initiated right from the start of the trial and broader stakeholders involved.

I think CAPRISA succeeded because they were well resourced being able to address community needs obviously endeared them to the community. Did they include non HIV activities like building school, teachers houses, and feeding program in their initial stakeholder engagement budget or it came up as an emerging issue and they requested  a supplementary budget?

In  our site  sustaining support groups after a study is difficult because travel reimbursements  for members stop when the protocol follow up ends, usually because budgets are limited to a study lifespan. However stakeholder engagement especially the CAB goes on because ongoing studies support their monthly meetings.

Broader stakeholders are engaged during our HIV vaccine awareness days on May 18th usually attended by former study participants among other community members and  and WAD days on  01 December

I have now learned that innovative ways exist of leveraging on other stakeholder events to sustain relationships in the light of limited budgets so that one can keep broader stakeholders engaged.

Dagna i agree. they did work with limited resources. i guess its how they are used.

<span style=”line-height: 1.5em;”>volunteers do play i good part also getting an outsiders view.</span>

I think CAPRISA uses ways to gain peoples trust and confidence, the way they build relationships in the community. on the positive side retention in care in accomplished and greater window for recruitment is opened.

CAPRISA also offers education (building schools). this gains more trust and understanding. they are very practical and dont only focus on HIV.

Sustaining relationships when resources are limited.

This is where one has to really ‘dig in’ and mobilize the good will of the community. One of the best sources are volunteers in previous trials.  I suspect they would be very willing to help spread the appropriate message.  When you mention leveraging partnerships and exisitng forums, I also think of other diseases (e.g., TB, malaria), where one could turn to partners involved with these trials to get their help and to also discuss the message that the impact of that diseae may have on HIV (and thus the need for HIV prevention).

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.

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.

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.

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.

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.

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.

We are a multinetwork site and have been fortunate to have had trails running back to back in our community , we have manatined engagement of communities through general sensetizations and participation in national events such as the national candle light and world AIDS day commemorations. The site continues to sit on the  District and City AIDS Cordinating Committee this is a forum where all stake holders implimenting HIV AIDS programs in the the district meet, we continues to use these forums to update and increase the research competency of the communities.