Micky Hingorani
Forum Replies Created
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I think that one major reason that make people to lack clear understanding of stakeholder engagement and its value is that they lack knowledge pertaining it. So in order to ensure that leaders and team members have a common understanding of stakeholder engagement i would introduce teaching and training programs aimed on informing them about stakeholder engagement and how their participation contribute towards the development of the project or the organisation. i would ensure that during this training community members get to understand that by being involved they will also benefit because during stakeholders meetings they will also get an opportunity to speak out their challenges. in these training leadership will also be encouraged respect and value opinion brought about by the members despite the level of engagement . furthermore i would also train leaders to build a trusting relationship relationship with members by showing concern and engaging actively with them.
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In my opinion, the best way to do this would be by example. My involvement in HIV activism began recently, when I was invited to be a member of a local CAB (for HPTN 083 in São Paulo, Brazil). Before that I had no clue about, for instance, the history of ACT UP and their role in changing the way researches were conducted. Moreover, until recently I wasn’t even aware about the troubles that affected and halted the first PrEP trials. When I looked into such cases, it became very clear to me why the stakeholder engagement was so important.
Therefore I believe that sharing knowledge about those past cases would prove to be an effective way to put all team members on the same page. That knowledge could come in any number of ways – from small lectures to exhibition of movies such as “How To Survive a Plague”. I also think it’s important to avoid getting too technical, at least in teams such as CABs, which may gather people with all kinds of educational background (the very term “stakeholder engagement” can sound way too much techie for some people). Movies and lectures with accessible language would avoid that.
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From my experience I think the community has different levels of knowledge and engagement in clinical trials. We need to be open and sensitive to know their understanding. Promoting literacy research to the stakeholders is one of the goals and it is possible through meetings, participation in local and international conferences where they can learn and exchange experiences. In this way, stakeholders can do feel their involvement throughout the research process. In our CAB, in some monthly meetings, we open the invitation to others community leaderships who are not directly related to the clinical trial. In this meeting, we update currently protocols and the new trials. Language is still a big issue and we use all tools that can make an easier understanding. If necessary are used graphic material and pictures to help with explanations.
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The most effective way of developing an understanding with team members is to have a common goal,for them to be able to identify the potential stakeholders.Get them involved in the activities and by doing so provide all necessary education and information.Understand the potential the stakeholders are bringing and the value they can add.Most importantly as a leader help the team to balance what is good for both the stakeholders and organisation
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I work as a site Study Coordinator for the Nigerian PrEP Demonstration project which provides Truvada as pre-exposure prophylaxis against HIV transmission among HIV serodiscordant couples. Before we began the project, our entire site team underwent training on research ethics, Good Clinical Practice and Good Laboratory Practice in December 2014. For some of us GCP/GLP was completely unexplored territory and the training really gave us in-depth understanding that biomedical HIV prevention research is a partnership between research participants and the researchers. We learned that we are not researching “on human subjects” but with individuals who have rights and whose dignity should be respected at all times. The principles of beneficence, non-maleficience, autonomy of study participants; informed consent and community engagement and so on. I facilitated another site re-training in July this year to remind ourselves and train the new staff we had recruited since the last training so that everyone is on the same page with regard to implementing the project in a scientific and ethical manner.
Also before the project began, the site team collaborated with an independent consultant in establishing a Community Advisory Board which is made up of volunteers: community leaders from five communities within the catchment area of our study site (Neni, Ukpo, Oba, Umunya and Nnewi), representatives from community-based organisations and civil society organisations working in HIV prevention, representatives from support groups of people living with HIV/AIDS, faith-based organisations, human rights defenders, representatives from the local print and electronic media and representatives from the local government AIDS control agencies (LACA) and the State ministry of health. The CAB was trained and given the capacity to effectively engage with us the research team on behalf of their communities. By working closely with us they will ensure that we include local perspectives, concerns and interests as we implement the study. Several CSOs working in the communities around our study site were identified and they form a linkage between us and the community. One of their primary functions in the project is to promote research literacy among the community stakeholders. We, the researchers on the other hand, are supposed to give them regular updates on the progress of the project in our bi-monthly meetings with the CSOs and CAB. -
Based on my observation with other AIDS Service Organizations and community based organizations in my community, there are some stakeholder engagements at the community level taking place but the problem is that there’s always a “closed door” when it comes to learning more about particular studies. It seems that you either have to have a certain certification or be a paid community worker to literally sit in these conversations.
On the contrary, I do agree with Koliswa because when it comes to research, some health organizations figure out ways to get their target population (including the famous “Search, Study, and Incentive” programs) but sometimes some organizations need to realize how GPP can take a critical role into their research.
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I work at the Desmond Tutu TB Centre and there are different units that focus on mainly TB related issues research especially as it affects children and HIV issues – research and the main study for the latter is called PopART HPTN071. As regards all those units it is mandatory that before any study can take place Community Advisory Boards (CABs) are established so that communities where research is undertaken are actively involved from the beginning to the end of the research study period and on an on going bases help to shape and inform everything that goes on at the research sites and communities. Relevant support and training is provided to cab that they can engage actively with different stakeholders at all levels.
At a departmental level, for instance with our department Social Science, it is compulsory for every staff member that joins the organisation that they go for the accredited Good Clinical Practice (GCP) training where amongst other things we learn about the history of doing research with humans and how it has changed over time, the values and principles that underpin undertaking research with humans, the process of community engagement and all the bodies and authorities that are in place to ensure that research is done ethically and the risk to humans is minimised. This is also where respect for human rights and dignity is emphasised including the participant’s rights to, after they have been informed thoroughly and understand what the study is all about, agree to participate or decline participation. We also attend a refresher course after three years where we are also able to share lessons learnt from the field and any changes to the GCP guidelines.
In addition to that we do an online NIH course on protecting human research participants. These are all meant for us to understand what is expected of us even before we engage with communities.
Within PopART we have a department that specifically focuses on community engagement at all levels so that by the time we as researchers, fieldworkers or intervention teams go to communities there is already buy in and support.
There are on going in-house trainings for all the studies that are undertaken and discussions about community engagement and key informants that we need to work with at different communities with different research populations. We also hold monthly reflection meetings to report on progress, achievements, challenges and lessons learnt from communities that can help us work better for the benefit of all the stakeholders.
Even though there are such systems in place, during implementation we do experience a situation where some community members or research populations know nothing about us and therefore have to make presentations to inform them about what we do, risks, benefits even before we can start working with target groups that the research is focused on. Other times only management know about us but the target groups or supervisors at implementation level do not know about us and in that situation we need to engage with management and also get a buy in from the people that we are to work with.
Sometimes in situations where in order for us to get the participants for the particular study we need to work with the clinics or community based healthcare workers. We find that even though senior management have agreed and given permission, community based healthcare workers for instance do not want to work with us and perceive us as adding to their workload without any compensation for them. So in such situations we need to explain things further and clarify what their role will be. And in some instances all we need is for them to introduce to a particular household that they visit from time to time and then leave everything to us. So we need to engage constantly on an on going bases to iron out any misunderstandings and challenges.
Sometimes, for instance community members expect the university to provide them with jobs and are reluctant to participate so we need to constantly clear up such things. In other instances other research institutions offer incentives like money or vouchers to participants, when they find out we have minimal to none such things they do not want to participate in our research and we therefore must explain why such discrepancies from similar research institutions. We also need to clear perceptions about our role on an on going basis, for instance the fact that we do research and not offer therapeutic services (we can only refer to helping organisations), such things.
So basically community engagement is at different levels on an on-going basis throughout the life cycle of the research study including explaining from the very onset how we will store collected data, analyse, report and disseminate results of our research and what interventions will be there if any.
Ongoing engagements at all levels, through relevant training, meetings, attending community activities, events and different platforms of engagement at all levels even on the very day of data collection such things as letting the clinic facility manager know that you have arrived, how long are you going to be at the facility with which target groups what challenges are you encountering, thanking him/her and giving feedback about you work at the end of the day. All such things are part of community engagement, so that you are supported and are able to clarify and clear any misunderstandings about what you are doing and how is it a risk or beneficial to the participants, community and to the entire public health agenda of the country.
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Hi Koliswa,
Thanks for a very informative response to the DQ. I certainly can relate to the challenge your team is experiencing with regard to incentives to study participants. This has also been an issue for us and has affected enrollment and retention of participants in our study. For instance, some participants and community stakeholders expect that we at least provide a stipend to cover for transportation costs of the participants to and from the research site. But this is not included in the study benefits because it is a demonstration study which aims to show how Nigeria can implement PrEP and TasP in a large population as part of a comprehensive public health program on HIV prevention. Some of the questions we aim to answer are – What are the barriers to uptake; why would people hesitate to adopt a prevention strategy? What are the barriers to adherence; what would prevent a person who has started PrEP or ART from continuing it? What are the most cost-effective ways of delivering, not just the drugs, but the counseling and support needed to make the strategies work? Should there be a separate program? Is it better done within an established program? So from time to time the issues of transport money and compensation for the participants come up during our community engagement efforts and we have to consistently explain that providing these incentives will distort the scientific integrity of the project. If in the long run the project is able to show that PrEP as part of a comprehensive national HIV prevention package will not work in Nigeria unless the transportation of clients is taken care of, we would have informed policy on that aspect. But it is sometimes difficult explaining this in certain circumstances, particularly when you know that the individuals are poor and cannot afford it.
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Learning about the types of stakeholders that exist, I would like to understand better ”broader stakeholder” how are they categorized? Does broader refer in context within a country or globally?
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I would ensure that every member of the team acknowledges the importance of GPP guidelines.Through training regularly team members get to know the importance of working together with same objectives and getting every one on board .This is because if we live, lets say the community leaders out for example in Uganda we have the Community Advisory Boards (CAB) they play a big role in recruiting and retention of trial participants. You cant find resistance of any nature and no refusal cases are minimized.
I would employ the monitoring and evaluation in a such way that whatever is agreed upon is documented analyzed and follow ups made to ensure
the out comes measured.-
Philister
September 16, 2016
It is a challenge to make an organizational leadership and team members understand who you or are considered stakeholders and why should they be engaged in most instance the leadership look at stakeholder engagement in terms of value for their money and what comes out of that effort, they should be able to understand that some stakeholders are passive but can influence the community and cause resistance.
We can engage them through educating them on the importance of stakeholders engagement and the benefits involved when we partner with them for the good of research and how it enhances community participation, trust, transparency.
The stakeholders are the voice of the community that should not be ignored.
Though the challenge comes in when the leaderships looks at the community as recipient of any product that is brought to them but do not listen to them.Let the leadership understand their priority is not the stakeholders priority and they need to sit down and come to a consensus. Present and explain their agenda to the stakeholders.
Dialogue and continuous education on the role of stakeholders, open forums between the leadership and stakeholders to listen to them, address their concerns and understand their needs and demands. Involve and ensure active participation of the leadership and team members in stakeholders meetings to get a picture of what their voice means-
Nashville CARES’ Chief Programs Officer is usually the Principle Investigator for our research projects. His vast knowledge of GPP and the importance of stakeholder engagement and value has and will continue. The research aspect of my job is new but I will ensure that I explain GPP to my team and any leadership body as I move forward.
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The GPP training has raised my personal awareness about the different stakeholders and the need to proactively communicate with them. The many real life case studies were very helpful in understanding the challenges around HIV prevention research.
A question – I hope people are still reading this discussion forum 🙂 – apart from the ebola example provided above, are you aware of any other disease indications were GPP is being applied?
Many thanks to Anne and Jessica, you are not only great GPP experts, but at the same time enthusiastic and encouraging teachers!
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The Caprisa site invested over time in building capacity within the communities, which proved to be a great basis to build trust, and to truly connect with the local community before a clinical trial starts.
Referring to chapter 3.5 of GPP, a study sponsor could e.g. build a connect with the local Community by providing clinical trial information, long before the study starts, during the trial upon study closure, and ultimately about the study results. Currently we do provide newsletters to study participants with an update about the study progress. The same newsletters could be distributed by the site staff to the CAB members.
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CAPRISA’s approach was effective as it included non-HIV related activities that played a huge impact on the community. Community engagement should be addressed with a holistic approach. Many times there are other factors that influence a persons behavior such as adherence to study product or attending study visits. HPTN 073 for instance implement C4: Client, Centered, Care, Coordination. This approached allowed study participants to address their own psycho-social barriers and determinants of health. Once these were identified participants created their own action plans and deliverable. Following these steps staff at the clinic aligned the patient external resources to assist with their self created action plan.