Lesson 9: discussion question (post here)

we try to have regular contact with the investigator and request their input via questionnaires after completion of each phase. with this kind of lessons learned, we hope to optimize collaboration. They also have the option to feedback and come back in case of (potential) issues. I think on a day to day basis, it is very important to keep communication lines open even if the discussed issues are sensitive or negative.

we still have a lot of potential to progress as we should have a kind of standardization. this “standardization” will be based on developing new/updated processes and documents but also just get to know each other better so we can use each others knowledge in reaching the similar goal.

Thank for this Question. For us in our trial site Lagos under the RV368 TRUST Study for MSMs which is still on-going. We have been carrying out series of activities during the trial to help sustain with MSM community stakeholders and the broader stakeholders.

We use the quarterly CAB meetings to share best practices, on-going challenges and find probable solutions at interval,

We also host the monthly support group meetings for those on the study found to be positive, in this meeting we build great relationship with our clients by building their skills in community capacity, PHDP and other forms prevention options to help improve the TRUST Study.

We also conduct advocacy activities in conjunction with MSM stakeholders to meet state actors and non state actors to help promote the gains of the study at community level.

We also make of mobitainment and some forms of edutainment to share information of the trial’s on-going activities in lieu with phone calls tracking.

Lastly we follow up too with community dialogue events through World AIDS Day, International Day Against Homophobia IDAHO,etc

Currently, we are building on another parameter of sharing best practices with the continuous sustaining of our HIV Research Literacy activity. While working toward forming a HIV literacy GROUP amongst  MSM community stakeholders and trial participants.

Lucky, your site is blessed to have the resources available to do mobile HIV testing and additional services such as family planning. To be honest, that is where I’ve envisioned the direction of our clinic heading in the future so, hopefully, I’ll have the support and resources necessary to do so. How are you able to offer/fund the additional services?

Our site has maintained relationships within all demographics in our community by continuing to support their causes, both in-person and financially when able. We attend community health fairs, PRIDE events, clinic open houses, and support our community members business as patrons as well as by setting up information tables and inviting community members to come out and enjoy food/drinks while learning more about our clinic, vaccine research, and HIV prevention.

Over the years we have built good relationships with the community to the extent that former study participants regularly visit our study site to find out if there is another study they can particite in or if there is anything else they can help with. Apart from this we maintain communication with key stakeholders via email and phone. We also take part in events and activities organised by the community.

we also continue to have CAB meetings.  Instead of focusing on specific protocols, we spend time on general information on topics of interest.

after trials we take time to go out to the community to disseminate the results of our study to the community.  In between trials, we focus a lot of our community outreach on clinical trials in general and PrEP education.  Its a way to highlight past and future research and show the importance of research participants on creating PrEP regimens.

Dear Colleagues

From our site we are consistently conducting trainings for community based organisations and non-governmental org and also we have mobile HIV Counselling Testing services which keeps our brand grounded in the community. From time to time there are events we facilitates such as World Aids Vaccine Day where invite community to participate. generally we visit and get invited to events so that way we stay relevant to the community. Some of the services we offer former participants is family planning service to them. Also participants are allowed to visit site if they have something to ask even if is not research related but socially. The “What’s Up” updates we do them relating to events on health calendar.

Thanks
Lucky

As Kathrine said, there hasn’t be any “after” or “between” for us as we are trying to develop new sites, but there is “before”.  I feel we learned a lot from the “before”, for example the pacing of our engagement activities. We had a good start with lots of activities that would build our relationship with sites and communities. but the challenge was that as our trial was delayed, and our program activities finished and funding became tight, we didn’t have enough to sustain the relationship building. Looking back, I think we should have better anticipated changes in reality and circumstance, and develop a longer term engagement plan that could have sustained some engagement activities in spite of hiccups and delays.

At CAPRISA we keep contact with the community and previous participants, providing information on science advances, new prevention tools, trial results and participate in open community health days hosted by other organisations/local health clinics. We try to ensure that we are visible in the community at all times

We value good relationships with the communities.To achieve this we make conscious efforts to sustain the partnerships which we believe is synergistic in nature.We have a CAB in place which acts as a link between the research site and the community.We have a stakeholders engagement mechanism in place where we maintain a regular contact with all the relevant stakeholders.We take part in community activities whenever possible especially during national and local celebrations.We have made it our role to update the various stakeholders on research outcomes and this is not limited to our trials but to HIV prevention research in general. Occasionally we organize social events for our participants (Current and former) for updates ,appreciation and relationship strengthening purposes.During  the Christmas holiday  we send Christmas cards. We also make calendars that we distribute freely in the community.

We have not yet arrived to “after” or “between” any studies but this was very helpful in giving us some ideas about activities and approaches to take when we get there.  We are currently planning a lead-up / preparatory observational study to lead into the efficacy study with the idea that participants in this study will be  eligible for screening for the efficacy study.  It will be key to think about the types of engagement during this study that can lead to the efficacy study, including research literacy events,  ‘appreciation events’, and creative ways to build trust within the community.

Like CAPRISA, Vanderbilt has the advantage of having been involved in HIV research at various levels for a long time. It has a broad portfolio of related research that includes laboratory, treatment, prevention, and public health study. Much of its work involves collaborations, and this broad base and longevity means it has established and reasonably good quality relationships with many stakeholders, although I’d like to see the depth of these improve.

In terms of treatment trials, research and clinic operations are so closely integrated that there is not much perceived need to proactively facilitate or challenges to sustaining an ongoing relationship with the community; these relationships tends to be somewhat less visible and public.

By contrast, in terms of prevention trials, there are some challenges. Between large trials, the amount of resources and personnel dedicated to community engagement is markedly reduced. The site attempts to maintain a level of community awareness in those times, especially since earlier stage trials continue. The CAB continues to meet on an ongoing basis at all times. Still, with fewer personnel and dollars, the ability to actively conduct outreach and engagement beyond the CAB is hampered. On the other hand, during a large trial, having a focus on a specific study and the associated messaging actually makes it easier and more productive to engage community in a number of ways including outreach.

Our site increasingly depends on personal relationships, and networking based on those and using social media to promote its existence and specific prevention trials. It also benefits from the reality that the Nashville and Middle Tennessee USA community is being served by numerous competent agencies that effectively and fairly broadly deliver treatment and prevention services and information to the communities most at risk.

How can we use GPP to optimize treatment referral among participants enrolled in HIV prevention trial who become HIV infected?

We continue to hold stakeholders meeting once every 6 months and monthly CAB meetings. We work in the same area so we communicate with them with upcoming projects and they become our entry piont in the community. The relationship with thses stakeholders and past participants needs to be maintaines as this can be beneficial in both parties.

We host continuous meetings and events during the trial, on which we update the community on the ongoing trial. Different kind of events are hosted to reach a broader public, e.g. fun-walks, soccer tournaments, community group discussions, events linked to public holiday’s (World AIDS Day, Human Right’s Day, Women’s Day etc.), events in cooperation with other organizations, like the Department of Health. We also share news about the trial via media, e.g. Facebook and local radio station.

After a trial we continue with the meetings and events to inform the community on the results of the trial and the way forward. Media is used on local and national level. The research centre maintains the social networks build up for future trials.

In that last 8 years, we have been in constant touch with our stakeholders and trial participants at our sentinel sites. This we do by inviting them to most of the health days that we mark in my institution (NIMR). They include world AIDS Day, world TB Day and World cancer day. During these days, participants are screened free of charge, fed, given gift items and transported back to their communities at no cost. We also do community outreaches to give public health interventions such as LLIN, ORS and vitamin C at no cost. Representatives from the research team are also sent to the communities during ceremonies such as coronation, traditional festivals etc to give cash and item donations as support. NIMR through our research team also send relief materials to communities displaced by natural disaster such as flood. Members of these communities are also engaged from time to time as members of the NIMR IRB.

We continue to engage with many stakeholders in different forums after and between trials / projects. We work physically in a similar space and therefore our paths regularly cross at meetings, events, and engagements. When we are holding an event or stakeholder meeting, we are sure to invite them.  Our organisation also holds the monthly CAB meetings (prevention, treatment, sex worker and youth CABS) on our site and therefore we continue to meet with stakeholders in this way.

For past participants/stakeholders they will be kept engage by making whats apps groups of all stakeholders, sending them messages, emails on events like (Birthday, anniversary, and festival)  so that they will remain attach to the research team. Arrange and sponsor social gathering, events and call past participants, and community members give them information about upcoming research/trial. In between trial all stakeholders are motivated in meeting, interviews to stick with protocol.

Hello colleagues and GPP team,

Hope you are all doing good, in Zambia, Lusaka, we are freezing, its the coldest part of the year.

Coming to our discussion question, In my context, it might be some how different because we use the same CABs for different trials each site and we usually have a study running. For example now we have TB Vaccine study, PopART study, HIV self test study. So this means the even if another trial ends, there could be another trial still being implemented at the same site.

However, there are times in some sites where a trial ends and there are no activities. In this case we support the CAB and even community health workers we wok close with by involving them in other national health programs or events that may be beyond trials. Programs like world TB Day, World HIV/AIDS day and other related activities and then refund their transport and time for participating.

In health centres we also sponsor their meeting, provides them always needed materials like sputum bottles, swabs, needles and other materials we may share with them. We also help with lab requirements.

We would be be proud to say we have established a very good relationship with most of our stake holders such that they are free to request for from the organization when they run of some materials they need.We also help health centres by running test they may not be able to do due to lack of equipment.

In short we make sure we are in touch and always assure them that a different trials may come up sooner that expected and it would be important for them to be in good shape when we need them. we always keep their hopes alive

These are some activities i may not have remembered to mention help us to sustain our CAB and other we closely work with and to keep our relationship going even when we are not actively implementing any trial

By sponsoring some local festivals which the communities value so much( like initiation to Adulthood) and taking part in the counseling session.

In addition we attain some of their ceremonies ( like Coronation).

We also hold meetings, visit, make phone calls, send mails to other stakeholders including CAB.

They all appreciate and always assured us of their support whenever we need one.

We continue to interact with our stakeholders through visits, phone calls even stakeholders we worked with past years. We hold CAB meetings quarterly and hold meetings with other stakeholders. My organization sank a water borehole in a local community their members were participants in a research that had ended. We still visit that community and some of them volunteered and are participating in the on going trials we are doing now.

Maintaining contact with stakeholders is relevant for the proper development of future studies with communities. Some strategies which should practice are:

-Present to stakeholders the results of investigations they are involved, in this way, they will know about their important role  will realize the role they have in their community”
– Maintain contact via phone or other types of communication to participate in the design of future research.
– Perform training and/or updates on topics of research for stakeholders, this would help to keep contact with them and also to strengthen their knowledge.

• This reply was modified 8 years, 3 months ago by Cynthia.