Micky Hingorani
Forum Replies Created
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In advance of this occurrence, the trial team would need to connect with community organizations and advocates to learn about resources available to support MSM in this community. Ideally providing psychological support for being MSM in a place where homosexuality is stigmatized and illegal. We would also need to get stakeholder input to strategize ways that the trial site would not “stick out’ and further stigmatize and out our trial participants. As a trial site, we have a responsibility to do our part to minimize harms to trial participants, and it does not sound like we have done all that we can to ensure the safety of our participants. We should encourage participants to report the attacks to the proper authorities, and provide whatever support we can (emotional, mental, etc) to ensure that participants are not further harmed by advocating for their safety and seeking justice in these incidents. The trial should have in place funding to cover health care related to any injuries sustained in the attacks and cover the medical costs for all impacted participants. Participants should be reminded that their participation is voluntary and they can leave the study at any time. Researchers must look into ways to further protect the identities of their participants and to conceal the population served by the trial site and execute them immediately. These plans should be revisited with advocates and community organizations as well as healthcare providers, stakeholders and community advisory boards.
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Engagement with Stakeholders is the first approach to resolving the problem.
Advise from MSM Advocates and CAB is needed.
Health education to local health teams who are doing regular home visits will be a way of conveying information to the community.
Community outreach to give information about Homosexuality. -
How would your site handle this situation?
1. For participants who were attached at the club, our research team would reach out to them to understand their current needs. If they are in need of healthcare, we would provide any medical support to them. If they need any psychological support, we would seek advice from local healthcare providers to see if we could provide counseling or refer participants to the services.
2. If an issues management plan has been developed before the trial, our research team would respond to this issue according to what has been developed in the issues management plan. If no issues management plan was developed before, research team would need to meet with its CAB and any experts in the field to create a plan that respond to this issue. The research team could also think about the possibility of engaging media in response to this – this needs to be handled with caution as homosexuality is stigmatized and illegal in this country.3. Have a community forum with participants: be transparent about what has happened, and be clear to the participants about what actions we have taken in response to it and to address their concerns in the forum. Understand if participants’ needs and if possible, provide the services or referral to them. We would also ask participants’ advice on what they think needs to be done to avoid this happening again.
What could possibly have been done in advance to try to avoid this occurrence?
1. Develop an issues management plan that identify any anticipated issues and address these concerns (if such a plan has not been created yet). If the plan exists, the research team could have meetings with stakeholders (MSM advocates, local legal rights officers, local healthcare providers) to discuss the existing plan to understand if anything is lacking in this plan and what could be done in the future to prevent these issues.
2. Seek advice from MSM advocates, CAB members and researchers who had experience working in this setting before. Collect information on what venues are safe and how to best protect the participants and what should be done to improve the confidentiality of participants.
3. The research team could also reach out to broader stakeholders (lawyers, local police departments etc.) to understand if there is any regulations/laws that could be used to protect research participants, and what legal actions that could be taken to people who attacked the participants. -
Once our protocol is on site, it will be reviewed. We will conduct an in-house training for all the staff members in order for them to understand it thoroughly. Then, we would hold a community workshop/meeting to educate and update the community stakeholders and CABs about the protocol; So that they can be familiar with every aspects of the protocol. The contents of the protocol will be shared in a language that is clearly understood by the CAB and get input from them as their response or reaction to the final protocol; since it affects the success or failure of the study. However, we will accept feedbacks, questions, advice, suggestions and inputs from community stakeholders from the workshop and bring them back to the research team. Also, being mindful that the protocol can be updated or amended as time goes on
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In my country Kenya homosexuality is illegal and MSM are highly stigmatized in the community. Curently we are engaged in HPTN 075, which is recruiting MSM,, first we were engaged in stakeholder community engagement and we engaged organizations and groups that deal with MSMs, we also had meeting with this groups and even offer them a meeting place at our site,We involved the ministry of interior and explained the health implication and why this groups, developed a risk mitigation and an emergency plan with the help of other organizations and advocacy groups that advocate for MSM rights. We also coined the name of the study to be acceptable and not raise eyes brow in the community and the peer recruiters w ere used to recruit MSMs in the study.
The Emergency plan is an issue management tool in the study and in case of anything we are able to call the responsible networks and linkages to assist in resolving the problems. This networks have even safe house/haven to transfer MSM s if they are in danger and provide security to them. -
I dont know how many of you know about the new gilead trial, which community was left completely out of the implementation. No GPP. I guess its a great opportunity To discuss about that.
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How would your site handle this situation?
The immediate response to this situation would be to determine the participants who were affected and provide or refer them for treatment for any physical injuries as well as provide counselling and emotional support. The need for a formal police report against the assailants will also be discussed bearing in mind the illegality of homosexuality in the country and the possibility of criminal charges being brought against even the participants themselves. In-depth interviews of the affected participants would provide more insight into what happened and all these should be well documented. While these are ongoing, our research team would activate our issues management plan which would guide us on how to handle the situation. The research team and community stakeholders should come together to discuss the situation; we will call an emergency meeting at this point comprising key members of the research team such as the principal investigator, the study coordinator; principal officials of the community advisory board (CAB), representatives of the MSM community on the CAB, representatives of non-governmental organisations working among MSM in the community and the local media. These stakeholders will provide advice and direction on resolving not only the issue on the assault on the participants but also the other issues that may emerge e.g. the media reports and requests for interviews by local media.
A next step would be to work to dispel the rumours about the research site and the study. The owner/management of the nightclub where the attack occurred is a key stakeholder in this situation. The research team would request for a meeting where the owner will be educated on what the study is about. Discussions will also centre on how they can support the research study. Working with the local media, the messages that had been created as part of the issues management plan to address situations like this could be broadcast through various means such as radio, flyers, pamphlets and posters. I don’t think the radio message should not be specific about MSM but in a general sense about HIV prevention and all those groups at risk. The nightclub could support the study by allowing flyers and posters to be placed in strategic locations in the nightclub. Other informal mechanisms could include organising a local event to raise awareness about HIV and the MSM research study in the community although because homosexuality is illegal in the country, it may be difficult obtaining permission from the local authorities.
What could possibly have been done in advance to try to avoid this occurrence?
In order avoid this occurrence, way before the study started, the research team and relevant stakeholders should have anticipated and listed all possible physical and social harms that might occur to study participants and develop policies to address them. They should also have also identified and listed all possible issues that could emerge and negatively affect the success of the study and developed an issues management plan to address them. The rumours about the study site being known as a ‘place where people train to become gay’ could have been nipped in the bud if there were ongoing regular consultations with the CAB and other community stakeholders. The community stakeholders could have informed the research team about the negative local perceptions about the site and they all could have collaborated on how to handle it before it got worse.
The policy on study-related social harm should detail how to prevent the harms, the procedures for encouraging participants to report if they experience social harm, the procedures for reporting social harms, who to report to, procedures for referrals for care and services for social harms such as counselling services and so on. The need to encourage participants to report social harms is especially important because fear of reprisal attacks or worsening of stigma and discrimination may discourage some participants from speaking up. -
It is a very complicated issue for sure!!! especially in countries where MSM practices are illegal like here in Tanzania. But I think it is wise to find MSM themselves at first before the study begins and seek some information regarding to how they think they can be safe when they intermingle in public places like nightclubs. So, through the information from MSM, then it would be easy for the research team to plan on how they can help them in order to avoid harm from other members of the community.
Using local radio to publicize the issue I think it is not appropriate because through the media, the issue might catch the attention of many people in the community and cause more harm. But also to report to the police in a country where MSM is illegal, is like pouring petrol in a fading fire…!
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What implications did the lack of inclusion of clean needles in the prevention package have on trial results?
Although the lack of clean needles was not the best HIV prevention package that could have been offered, the 2013 results indicated that the PrEP trial was successful, despite having clean needles. In some ways, not having this additional means of HIV prevention showed the strength of PrEP, showing the trial was a success. Sadly at the risk to participants and the decrease in trust in the community.
How can researchers engage stakeholders to better negotiate comprehensive prevention packages tailored to the needs of diverse subgroups?
Researchers should have meetings with stakeholders prior to initiating trials. These meetings should be used to gather information about the cultural and political climate that will impact the trial; barriers to components of the hiv prevention package; and to form partnerships to provide needed HIV services and parts of the prevention package. -
This is another question that I’m nervous to answer–my first thought is that it doesn’t apply. The other side of that is that I may not know enough to be certain of this. I work in the Division of AIDS extramural program so most of the work we do is related to funding grants and research at other institutions. A protocol wouldn’t come to our site for execution prior to research, but perhaps in a grant application prior to funding, at which point it may not be final. However, during the application process for the Martin Delaney Collaboratories, there was a requirement that applicants detail their plans for community engagement, detailing how they would incorporate and support a CAB in the execution of their research plans. Not exactly the same as what is being asked, but a close example relative to the program that I support.
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Identify organisations and advocacy groups that work with and offer support services to MSM and seek advice on how best to proceed with this situation based on their experiences. Seek advice from MSM on how they have dealt with similar situations before if at all. Report the case to police, they are still citizens or residents of that country they deserve protection like all humans, even though they will possible experience stigma, discrimination and humiliation should police hear the details of what happened. Homosexuality is legal here in SA but MSM still experience stigma, discrimination and humiliation at the hands of personnel in such places as police stations and healthcare facilities as soon they get to learn about a person’s sexual orientation. It doesn’t happen everywhere but in a number of instances. Based on the advice, suggestions and insights from these groups they can come up with a plan and a strategy of support to affected persons.
To consult with and engage such stakeholders as above from the very onset, to benefit from their expertise and experience of working with MSM or even having some members having personal experiences as regards their own choices or sexual orientations for example, and integrate their suggestions and insights in their protocol. Should have even done feasibility study in partnership or consultation with all the relevant groupings that are supporting of and offering, or benefiting from services targeted at MSM “populations” including advocacy groups Seek support from international community, especially that is pro MSM to find ways of strategically putting pressure on the country to relax its laws somewhat, even though this might take a long time to come to fruition.Engage with such ministries as health to engage on the benefits of offering support to MSM or establish if such services exist at all but be perhaps not widely publicised because of the laws of the country especially in light of the global challenge of HIV which affects all segments of society and necessitates in some instances tailor making services and programmes to the contexts and specific needs of particular groupings if any positive impact is to be felt as regards reducing of new infections and general management of HIV. In any country there’ll always be undercover good Samaritans within the very systems and environments as described above.
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The research team needs to solicit information pertaining to the key barriers affecting MSM by engaging the various MSM communities existent in the trial catchment communities among other stakeholders.
Hope these crazy pointers may be useful in the context. -
Hi Mary,
I like the idea of a non-publicized safe house because due to the complexities of the situation, the usual options for safety are likely not feasible. In countries where homosexuality is stigmatized and criminalized, LGBT people may experience different forms of stigma and discrimination and police protection is often inadequate. They may be driven out from their homes and communities by their families and neighbors; landlords refuse to rent to them, denying them housing; health providers may stigmatize them when they seek services; and they may be fired at their places of work if found out and so on
As at 2014, there were 38 countries in sub-Saharan Africa that criminalize same-sex practices. In Nigeria for example, legislation was passed against homosexuality in 2014 criminalizing not only same-sex practices but also outreach efforts, thus placing health care providers and outreach workers at the immediate risk of imprisonment. It really is a dicey situation. -
Hi Mary,
Thank you for sharing the story about the horrible increase of HIV incidence that occurred in Indiana. I remember hearing about it and being mortified that we still shun needle exchange when it has been proven it can do so much good to prevent HIV without increasing the use of drugs. Government officials have got to do better at balancing public protection and public freedoms. This epidemic could have been avoided, as it can be avoided in many cities across the world. -
Lucy,
Thank you for sharing. It seems like your site has a solid grasp on GPP and is incorporating it widely in the area of protocol training and dissemination amongst all relevant staff holders. You use a broad array of tools including plain language, illustrations, and a feedback loop to ensure understanding. Sounds like a great system to make the best effort to help the community stakeholders understand the protocol!