[Peter]

Larissa,I like the idea of fun-walks ,soccer games and the group discussions.I think this would work well in our context.

I will be a worthy trial for consideration. We are also considering facebook.

Regards

Peter

[Peter]

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.

[Peter]

I like Anthonia views of visiting the club and having a discussion with the club owners.In addition I would be very careful to assess the mood and safety when holding such discussions.Remember here the community thinks the site “trains men to become gay”.

[Peter]

This is a practical example of a community that highly stigmatize MSM. It is also an indication of lack of proper stakeholders engagement.However I must say that even with proper community  stakeholders engagement such issue might still occur in real life.The welfare of the participant will be paramount  and therefore their health and well being will be assessed,reassured ,treated if indicated and referred for extra care where necessary. To mitigate such a scenario from happening I would convene a stakeholders engagement processes by conducting a proper stakeholders analysis.This would  help me identify who to involve in the process.I could constitute a CAB if non exist.Other members to include would be legal rights groups and the club owners for them to understand the nature of our work.I would work closely with the media at the local level to ensure the population has the right information about our work.The stakeholders identified would best know their roles in the study.An issue management protocol would be useful at this point. If necessary i would work with legal and human right organisations for legal redress.

[Peter]

Yes I share the same view with Bamidele,that the data analysis is not clear whether intent to treat or per protocol.

Stakeholder strengthening is needed.

[Peter]

I appreciate and respects all the comments from my colleagues. This is an interesting study in that clean needles were not provided to the study participants.This could be explained by the Thailand government on drug users.The provision of clean needles is a contentious issue where a solid universal position have never been attained due to the various country context.It may sound unethical not to provide needles but it also mirror the true real life happenings.The study results cannot be ignored but am not sure what analysis was conduct whether it is intent to treat or per protocol analysis.

This study  also suggest that stakeholders were not properly involved.Researchers need to involve also stakeholders in designing a comprehensive HIV prevention package.This therefore calls for empowerment efforts among the various stakeholders to inform a trial.The researcher is obligated to report both the negative and positive outcomes of a trial.

[Peter]

I strongly feel that this is strength and benefits of having GPP in place.if all stakeholders were involved it would make research work very easy.The challenge at times remains mainstreaming GPP all the way from the sponsors to the grass root stakeholders.

We must keep the fire burning.

[Peter]

I agree with Caroline, on the issue of making amendments to the protocol however the worry about the amendments turnaround time is a major concern sometimes with huge implications.Participation by all in protocol development is ideally the best option though its not always the case.

[Peter]

We have had several studies in our site where the protocol has been received when it already finalized.What we have done in the past is to start the engagement at that level.I agree that not much can be done at that moment to inform the protocol. I also agree that this process has to change and I am happy as I write this, new studies are consulting widely.We solicitate for buy-ins from the stakeholders and note any comments and suggestions or recommendations which we relay back to the protocol origin. Sometimes this process is so fixed and definitely it cuts out the benefits of stakeholders shaping out the research process.

We have not had an instance where the protocol has been changed as a result of feedback from key stakeholders so far.

 

[Peter]

Social media has been quite effective in our engagement efforts. Social media and online communication are both  fast and fluid.

It is far much easier to get to every one in good time.It is a good media to pass critical information.The underside of social media has been when the messaging is not well understood or the issue is contentious .It makes it a little bit difficult to reach a consensus.A very good example is during the early days of PrEP trials.Many advocates were against the conduct of PrEP since PrEP was giving ARVs to HIV negative people yet many of the HIV positive were yet to receive the drugs.Coming to a consensus in the social media was a bit difficult and a lot of discussion had to be made.When well channeled social media is effective.

[Peter]

Thank you Caroline for your sharing.I agree with you that social media can be very appropriate especially for the youth.

My only concern with social media is what happens when there is misleading information?

Is it more harmful than the normal mode of communication?

Regards

Peter

[Peter]

I agree with Caroline,the absence of engagement plans in the protocol and lack of expertise makes it challenging to conduct proper engagement.

[Peter]

Determining which stakeholder to involve is usually pegged on the time of the study,that is the study population,the location of the study and the resources available for stakeholder engagement.We usually tie the engagement to the best approach usually maximizing on the the available resources for maximum out put.We also use past experiences to determine which stakeholder is more practical to work with.I have previously seen some stakeholders decline participation despite making all efforts to involve them.Availability of resources and the inclusion of stakeholder involvement in the protocol determines  the extent and who to involve.

[Peter]

I totally agree with the views of Phumeza,that consultation with the relevant stakeholders is important.It also provides an opportunity for the stakeholders to inform the study.The researchers have an opportunity to suit the study to the needs of the community.

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

[Peter]

We have had some few instances that we have conducted formative research to improve on the study protocol.To me this has had huge impact on the involvement of the various stakeholders.Formative research provided an opportunity for  engagement and inputs to the study protocol.It also an opportunity for mutual understanding between the researchers and the various stakeholders including future study participants.Research tools have been modified to reflect respect and autonomy.

[Author]

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