Micky Hingorani
Forum Replies Created
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Hi Charles, good to know about your local policy: this seems to be a useful approach! How much does such review usually take?
Also interested to learn how other sites deal with this: all input welcome!!
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What is the difference between involvement and engagement. This is now an issue that I am debating as I learn about the priority roles using the guide in the four quadrants. -
how do you sustain the motivation of the stakeholders ?
thats a tough one.
depends on the stakeholder expectation and that the trial did not change.
-keeping the stakeholder informed and the progress of the trial can help.
-conferences to show there is a need statistically
-stakeholder audits is allowed
-feedback
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– As per previous study. depends on the area she/he will represent the community but has to be part of the community for a long time and has been involved in the community before in a positive way.
– multiple partners is hard to manage, depending on area of expertise that conflicts.i feel dealing with with partners individually is more clear and then review both sides together and come to a conclusion.
people often see things differently also personalities
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MRC/UVRI generates a list of stakeholders. Discussion on CAB composition basing on location and expertise is done.Our CAB representative constitutes of people with diverse expertise and influence in community and each of them serves on the CAB for a period of 4 years.
Having this CAB in place is not our ultimate stakeholder engagement plan, other stakeholders are engaged on several occassions in study activities since not all key stakeholder can be hosted as CAB.
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The strategies that we use to ensure that stakeholder motivation remains constant and sustainable even in-between trials is that we make sure that we support their plans for community engagement for example at the beginning of every year at the NGO forum meetings we exchange event calendars for each organisation. we also offer support where needed in regards to their scheduled health campaigns. this year we partnered up with brothers for life and the Centre for Creative leadership (CCL), Chaps, The centre for HIV and AIDS Prevention Studies (CHAPS) and New start. the purpose of the event was to promote Medical male circumcision (MMC) and also to get the community to know their HIV status by voluntarily testing for HIV. SRCs contribution was to educate about HIV and co infections and clinical trials and also the distribution of condoms and education about condom use.
This also helps when we conduct our own community engagement campaigns e.g WAVD the above mentioned organizations gave us support by adding value to our event and also assisting in the marketing of the event.
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Thanks for that honest reflection, Charles. It is tough when you really think of the day-to-day realities on the ground for researchers. While there’s nothing inherently wrong with recruitment, when it’s the primary focus with the community, it can be inefficient and even costly in the longer-term. If the focus is on building trust and sustaining relationships, then the broader culture and community genuinely supports and champions the research and its benefits…..and then everyone naturally wants to be part of the process….
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For the additional question of sustaining stakeholders interest; Every May 18th the The World AIDS Vaccines Awareness Day (WAVD) we work with star athletes to stage competitive race and fun run. This being a region where most of the international athletic champions come from it attracts community interest. We also host talent shows and body building events as build up activities for WAD every December and involve stakeholders in these plans.
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1) What is your experience with stakeholder mapping? How do you use stakeholder maps at your site? Discuss how you (and your colleagues) determine the importance of involving one stakeholder versus another. For example, how do you determine who constitutes your CAB?
In the beginning of FEM-PrEP study, we identified community stakeholders who would be relevant to engage for the purpose of the study. The study population was women who exchange sex for money/goods. During mapping, we conducted questionnaires with community members and stakeholders for more information to aid our recruitment strategies, CAB selection, and other aspects of the study we were about to conduct (FEM-PrEP).
As mentioned above, stakeholder maps assist the site to understand the target population for the study before implementation. Information such as where the target population may be found for recruitment purposes, what aspects to consider during recruitment and during study procedures. We also identified and communicated with the stakeholders that work with the target population.
To determine which stakeholder to choose against the other, we looked at the diversity of CAB that existed that time and identified the gaps. In doing so, we learnt that we also needed, for example, a CAB member who represents the target population, we did this in order to learn more about the population. Current CAB members in recent studies constitutes of various representatives such as gay and lesbians, priest, health professionals, politicians, taxi associations, etc. However, we identified a gap, we need to find a CAB member who will represent traditional healers.
2) Stakeholder engagement is not easy and multiple partnerships can be hard to manage. How can you partner with stakeholders to create a community of sustained engagement? How can you get members of your research team to “buy-in” to sustained or longer-term stakeholder partnerships?
Strategical partnerships are key to stakeholder engagement. Each partners should fulfil a specific function in order to meet our community engagement objectives
Treatment Action Campaign (TAC):
This is an advocacy group that can influence the decision making process by public sector in regards to human rights and health issues (HIV and TB treatment etc.) our partnership with this group brings us closer to various population within our community such as LGBTI, youth and disadvantaged people. We gain insight into possible barriers that can stop the communities buy in into clinical research. With that information we can create appropriate strategies on how to engage and educate those publics
NGO forums:
These forums are created by and governed by the respective NGOs register and not registered and also the local district. These assists the site and other organisations to communicate with a broad audience at the same time when monthly forum meetings are in session. Each organisation is given a slot to present s or inform the group should a need arise.
We use this opportunity to inform/update our stakeholder about recent developments at site, studies: upcoming studies, result dissemination, campaigns and educational programs. This also helps us not to duplicate other organisations activities such HIV, TB, Contraceptives and campaigns. As a result we end up partnering and sharing programs with stakeholders instead of competing.
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I start by admitting that in our site we have not engage in stakeholder mapping as described in this course, though I have some experience to share, that makes the case for the need for stakeholder engagement before trials.
1. Our first study was a HIV vaccine cohort targeting mainly Tea plantation workers and their adult dependents to establish HIV prevalence, incidence and viral diversity in this community which fairly represented the general population in the region. The tea plantation was chosen because it had a stable population of migrant workers residing in the plantation who would be easy to follow up. Scientists went population and explained to the workers that they aimed to recruit participants who would be tested for HIV and the results would be confidential, among the information to be used would be their employment numbers. Plantation workers declined because they thought their employer was working with the research to find out people who were infected so that they could be fired. During that time care and treatment was not available and knowing one was infected was like a death sentence. All attempts by management to convince workers to attend information sessions failed, since workers and their adult dependents had been assured that participation was voluntary.
Scientist took a back seat and engaged community outreach team to establish what the issues that generated hostile reception of the study were. This when it was decided after learning from sites that had done similar work, that it was important to form a community advisory group. A scientist, plantation executive and some plantation union representatives were picked and the scientist became the group chair. When meeting were called, participation was very poor. To improve community dynamics, the scientist, and Tea plantation executive stepped down, and in their place a local teacher, health care worker, and grass root government administrator were picked and information on community fears and concerns started flowing in, which were gradually addressed
The local administrator, Pastors and teachers had received all manner of myths from the community indicating that they trusted them and hence their membership. Workers were being represented by their union and they had to be included. Members were therefore picked based on the trust the target community had on them.
To engage various stakeholders of diverse backgrounds was initially a challenge, however they were informed in capacity building forums that HIV was wrecking havoc in the community and has leaders they have to lead the fight from the front and that research was critical in knowing the extend of the problem, so that a solution the search for a vaccine could begin. They were eventually brought together in support of research by the common threat they all faced.
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I do not consider recruitment as the as the core theme and objective of stakeholder engagement but I can understand where most of us are coming from; In most sites or at least in our site community engagement has always been not been given the priority it deserves. What usually happens is that when a protocol is being developed scientists who have the say in protocol management will be preoccupied with the science and budgets. By the time version 1.0 of the protocol is released priority becomes the regulatory review process. The next thing will be to ask the community engagement team to develop a recruitment SOP and the pressure move to the community and get potential study participants for screening. It is therefore understandable why people confuse the two. This training has described Community Engagement as the process of identifying, educating and involving critical stakeholders ( which includes potential study participants) before, during and after the trial.
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So based on our experience any CAB member can have their capacity build to review any protocol in the HIV field.
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In our site our CAB vice Chair sits on the ACTG Global CAB (GCAB). Every time a protocol is being developed he receives a draft which he shares with other members during their monthly meetings. A questionnaire accompanies the draft which tries to establish;
i) whether members understand the protocol
ii) whether it addresses or tries to answer a problem that is relevant the site
iii) whether members would participate in the study if they qualified.
To assist CAB members review the protocol we get one of our scientists to take members through the protocol, demystify the medical jargon thus helping them review the protocol. In our case therefore we do not expert CAB members but get experts to help members understand the protocol so as to have the capacity to review.
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Wen we were conducting community engagement in our community we realised that the is an educational gap about research when it comes to our health service providers specifically professional nurses. this has led us to structure our community engagement/education plan to continuously educate nurses and also student nurses about clinical trials and ethics involved in clinical trials ( this group is was the most influential group to discourage the community from participating in clinical trials). This strategy has helped us to reduce misconceptions about clinical trials and participating in clinical trials it has also helped with recruitment as nurses have become willing to refer participants to our site.
A secondary and yet equally important benefit is the ability to community with different populations within our community such as LGBTI, religious and traditional groups that do not believe in modern medicine. we are now aware of the expected challenges and how we can overcome them as we are slowly building trust with the above mentioned groups.
LGBTI: we managed to receive a training session for all staff from an LGBTI representative (OUT well being clinic) on how to engage the LGBTI community the different identities within the LGBTI community, sex as a form of identity and as an act.
Religious groups: the first challenge we encountered was gender inequality, abuse and violence for example 14 year old girls being made to drop out of school and forced into marriage.
women being discouraged to seek out contraceptives as well as medical services without the supervision/consent of a male
Traditional healers. their still traditional healers who advocate for HIV being a whit mans disease and that they can cure it. in most cases they classify HIV symptoms for that of a ritual,ethnic or ancestrally calling that requires for the person to become an initiate to be a traditional healer.
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Recruitment is key in any trial but i think it is not a key engagement objective. before we can recruit we have to engage the different stakeholders. though we consider trial participants as stakeholder we do not starts with them. when it comes to outcomes i think trial outcomes becomes key objective because if we do not handle trial outcomes accordingly, either Favourable or unfavourable they may affect how we conduct trial in the community and support we have.