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Completing the blue print has been quite an experience! It is not a straight path to the end of process. It takes a back and forth Arrangement reflecting on the different stages of the process. It is not a one man show!! It involves team/stakeholders effort to complete. It is an investment plan.
I am surprised to learn that community/stakeholder engagement takes a systematic approach and can be closely monitored.
I absolutely join the team contributions on challenges of trial dissemination and applaud members for sharing this. However,allow me add that it is another challenge to interpret statistical data in a language that communities can understand. Communities may also fail to attach relevance of the trial to their community specific health needs. To what extent is the trial whose results you are giving addressing the specific immediate needs?
Sustainability plan:
Note that the life of a trial comes with unique benefits to the community like HIV testing, treatment,referrals etc. These ultimately end with the life of trial. This has always been a challenge during dissemination where stakeholders ask for continuation of services.
Congratulations to the team!
Considering the global demand for new preventive tools for HIV/AIDS,every one would be more excited to be part of the very first to gain access regardless. Even myself would be part of the queue despite non participation in trial. My country Uganda would also be more willing to introduce and scale up of this product.
Validating this product would mean introducing the product to the gallant trial participants and local community stakeholders as a priority for their noble involvement in the entire process.
But even before introduction, the Ministry of Health would plan roll out through the national health system with special consideration to the high risk populations who are key drivers of the epidemic. This would be an opportunity cost considering the financial resource envelope of our country.
During results dissemination, stakeholders are engaged differently at varying levels to ensure goals and objectives at this level in the process are achieved. CABs are engaged in drawing a dissemination plan, preparing key messages and their translation into local languages, sports events as a community mobilization tool, question and answer sessions, research team interprets results.
Hello Team,
I have enjoyed each one of your discussion and compared with my own experience and now can confirm with some examples at home.Researchers in a past trial thought recruitment could be done through identification of individuals without engaging stakeholders/communities. The first 4 participants where enrolled but exited at the same time before the next visit. Evaluation was done and we realized communities where the participants came from did provide the contrary. It was until community engagement was intensified that we were able to retain.
Sustaining relationships requires innovative approaches and consultations with relevant stakeholders and maintaining a continuous presence in the communities.I agree with Jauhara on marking important days in the communities but also establishing community hubs cements relations because hubs could act as contact points for stakeholders and service providers.At home,we have established community hubs which potential service providers use to offer services to the underserved communities.We have established networks with service providers who routinely move out to provide services courtesy of us.Routine meetings and refresher workshops with grassroot stakeholders.Periodical updates on trials and dissemination of results.We engage communities in sports activities punctuated with HCT and health education.
Team,
Going solo for our site whose earlier submission in the previous modules(lessons) that trials are happening in research naïve communities(fishing communities),unique harms include; Community stigma( trial participants are branded HIV positive by virtue of their participation),Big volumes of blood samples and female oppression by husbands .
Mitigation is done through community sensitisations ,demonstrating between blood donation and volumes for trial, male involvement at screening , research literacy campaigns.
Dear Team,
Better late than never!
I join the discussion with excitement on your submissions regarding the topic. This excitement stems from the background that all the physical and social harms discussed cut across the various sites. True?? To me , this alone cements the need to implement GPP universally.
Patchara and team,
Confusion and misconceptions are true characteristics of stakeholders! It is imperative to always clear the confusion and concerns earlier than we always do.
Even with the promising/positive outcome of the trial, stakeholders had lost confidence in the entire trial. Prevention trials did not meet prevention standards!
This now reminds us of a continuous mechanism to involve different stakeholders in the entire cycle. Negotiations are key in the trial process. Stakeholders concerns and perceptions can be addressed at this point.
I like Leaders contribution on stakeholders involvement in the strategic planning. How do we elevate the stakeholders to the level of strategic planning where atleast they can contribute to the socio-science component of the protocol. Not all the entire protocol is science! Remember stakeholders have the socio-cultural competency which the researcher may not have.
Dear Team,
Gone are the days when protocols were handled like holy bibles; One way traffic, no input, no consultation. One vivid example I can single out for successful stakeholder engagement is the ability to involve and create opportunities for reviews, translation into local languages and above all the chain of approvals from bodies where stakeholders are represented.
At our site, the research team is involved in reviews WHILE the CAB is involved in translation of relevant documentation.What is interesting to note is communicating the process of arriving at the final protocol to implement.
The impact of social media and on-line communication on trial at my site is not serious considering the level of technology in the country and specifically the coverage of participating communities.However, I must we begin to see mushrooming community local radios that are commonly used to communicate within communities. The operators are not professionals and therefore not competent to communicate well. The research team usually comes up with written messages to be aired out on these local radios BUT are misinterpreted and ending up negatively impacting on the trial.
Hi Team,
My little experience with stakeholder mapping is that stakeholders are identified basing on locality of trial/studies and using priority grid. It involves taking decisions on who? where? how? when?. Requires systematic review but while maintaining the growing list and eventually developing a network. Determining the level of importance depends on level of influence, location of the trial, complexity of trial, support from the individual.
Building sustainable partnerships with stakeholders is a continuous process that requires deliberate involvement of stakeholders through out the research life cycle. Well as trials could have different stakeholders, it is important to bring them together and share experience as a net work. It is like making new friends and dropping old ones. Instead stock should be taken to have both old and new. Former trial participants should be used as ambassadors of on-going trials. The review of priority grid should not aim at dropping but rather change positions.
Hi Team ,
I must start by saying thanks to all for the wonderful contributions on the topic. It is quite enriching! Allow me add this that formative research is an entry point for general community engagement. It sets the foundation for meaningful community engagement in the trial future.They both require interface with stakeholders but at varying levels of stakeholder engagement. Doing formative research is one way of recognizing stakeholders competency and integrating it with the trial.
My trial site attaches greater importance on the role of different stakeholders in the entire research process. Different stakeholders have been involved in Physical mapping and geo-spatial mapping of research communities ,identification of potential stakeholders, translation of relevant trial documents , identification of potential research communities , understanding of socio-cultural practices , community engagement planning , determining weather and fish seasonality which have a bearing on trials in fishing communities.
I look forward to looking at documents and tools! Bravo Marie.
Hello Team, I summarize a goal in its broadness as the long term big and imaginary picture identified from the world of current challenges. Objectives as the road map to the destiny(goal) while activities are mechanics of getting there.
Looking at the benefits of engagement throughout the entire process, this could be seen in terms of short and long term benefits.Continuous engagement promotes sustainable support and bridges the gap between trials. Participatory M&E is facilitated by this continuous engagement and cultivates innovative approaches to effective engagement.
Hi Anne,
I have just been reading through your contribution and I can not wait to pick out this “constructing relationships with stakeholders”. To me this is paramount if we are to strengthen this in research. It is important for us to reflect and see the methodologies we employ to construct. we should look at this as an investment. We have seen ourselves engaging our stakeholders for only the life of a trial!! Michele’s example teaches us to widen our stakeholders scope to a global landscape. The site specific trials should be seen as a contribution to the global search not stand alone.
I liked Michele’s contribution!
