Micky Hingorani
Forum Replies Created
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<span style=”line-height: 1.5em;”>I find this part especially interesting, as my organization haven’t done a lot formative stakeholder engagement yet, but will most definitely need to in the near future, so we have quite a lot of questions around this: </span>
- At what stage of protocol writing do you engage with communities (synopsis, just prior to finalising, etc) as these are usually very short timelines.
- How much detail should be provided on the protocol?
- Would the protocol only go to sites that are selected to be part of the study or should all possible sites be included in the review?
From so many of the examples mentioned it is very clear that this is an essential step, so all of these comments are so informative!
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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?
We as a company did mapping workshops at each of the study sites to map what they already have in place in their community engagement programs. This mapping tool is based on the “onion” graph and then lists all possible types of stakeholders from study team to participants to national stakeholders. At site we would discuss each type of stakeholder at site and the type of relationship (ie. healthy relationship with frequent contact or currently unhealthy relationship with negative or no contact) between the site contact and stakeholder. Usually from these meetings it became clearer where some more work or follow-up was required and why.
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?
It is always important to show some interest in the stakeholders’ activities too, for instance if your stakeholder is a CAB member who is also involved in a community project, to try and be involved and supportive of non-trial-related activities and to try to collaborate on projects where both parties/causes benefit from it. This should get the research team more involved in partnerships too.
Research Training for CAB members are also a very good idea. This keeps members engaged and part of the cause instead of the relationship being only about giving feedback in one direction at a time. Once someone feels equipped to deal with a concept or situation, they will automatically feel more part of it and responsible for it.
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Every protocol is aim at addressing gap in knowledge which will accumulate evidence that will inform policy decision. We engaged policy decision makers and top government functionaries through a process called administrative approval. We usually write and get to make presentation to them on the protocol synopsis (too busy to read ) and require that they officially flag-off activities for the protocol implementation. This usually lead to the involvement of their technical team and create a sense of ownership. It’s slow the process but in a long run it’s helps because both the IRB approval and the administrative approval issued are view as instruments of government authority.
Addressing a finished protocol, I will organize protocol review meeting with key stakeholders including an existing CAB.
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This course reinforces how essential and effective GPP can be. I was at a workshop for clinical trials design for emerging infectious diseases (ebola virus preventive vaccine trials) earlier this week and the recurrent theme that was discussed was the importance of communicaiton with different stakeholders and how without this, none of these trials could have been successfully implemented. The concentric circle of stakeholders was even mentioned! Go GPP!
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I am still working with my colleagues for input on our action plan/stakeholder engagement plan. A big question mark for this is some management changes that make formalizing plans a bit challenging during this transition. While I am not in a research setting, I expect that this is a very similar challenge that other learners in this course face–whether it is shifts in management, priorities, or funding (or all of the above). The approach I am taking (with other colleagues) is to lay out our suggestions and outline for a plan so that we are prepared and ready to discuss this with our leadership team. One key challenge we have identified centers on communication and outreach–strategies that keep partners and stakeholder engaged in the long-term. Refining our communication strategy is one of the key focus areas for this transition period, and I am personally working to ensure this incorporates stakeholder engagement strategies that I have learned about in this course.
I wouldn’t say this so much changed, but rather reinforced my thinking/understanding of GPP and the fact that GPP approaches have a role and are extremely valuable even outside of the research/trial context. It did surprise me a bit in the course of the training that many of the questions that flagged for me are things that I have already been in process of thinking through with colleagues–now it is just a question of putting together an actionable plan to better incorporate stakeholder engagement into the core principles of our organization and its operations.
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Sustained relationships over time with communities you are doing work with/in is important to establishing credibility and trust–this is important in garnering community support for the work and research being done. Communication and continued engagement of the community helps to sustain relationships and reinforce the established trust in the time between research/trials.
Sustaining relationships with stakeholders (both organizations and stakeholder groups) is something my organization has struggled with–to date, most of our approach to engagement has been one-off and project specific which is a problem when it comes time to start a new project/program–since oftentimes the same stakeholders need to be re-engaged. To address, we are thinking through our approach to stakeholder engagement as a whole for the organization and working to put a formal plan on paper to serve as our standard approach that will be incorporated more systematically to our work. This will include better implementation of evaluation to gauge current/past successes as well as weaknesses and areas that we need to improve upon, particularly in terms of garnering stakeholder input and involvement in our work.
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Most recently, in starting up a new program, we used surveys to garner input from our stakeholders for an initial needs assessment to inform our program development. While we started with a concept–building a new training program from patients and advocates–we decided that we would use a needs assessment survey with input from our stakeholder to set priorities for the topics covered in the training. This way, we can ensure that the course an materials we are building are relevant and directly applicable to current stakeholder needs. From this input, it became clear that we needed to further refine our target audience for this training– patients and patient advocates are not always one in the same, and this distinction would likely influence the specific focus and priorities of course leaning objectives. We are planning to hold a broader stakeholder meeting to discuss this issue and to clarify objectives and audiences later this month.
2- I am not in a research or trial site setting, but my organization is currently in process of some shifts in management and restructuring of priorities. So, related to the given scenario/question– sometimes staff often face priorities set by upper management and program concepts handed to us to implement. It is a challenge to then work backwards to think about how to incorporate stakeholder engagement with a plan that is already outlined. Therefore, a core focus of my work in the next couple months will be working with colleagues to outline a formal stakeholder engagement plan to use for our organization– having this in place as a standard procedure or framework for our approach will help to ensure that GPP and stakeholder involvement is integral to all of our work.
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CAPRISA followed the GPP guidelines by involving the stakeholders right from the start and they further worn the study population’s trust and confidence by addressing their needs such as building schools and engaged them in non HIV related activities pre/ post the trial period.
In our site we have not been able to sustain such non HIV related activities and more so post the trial period like the CAPRISA did since the budget is specific to various specific studies within a set up period of time. However the community has benefited from PEPHAR Program, through HIV prevention trainings, renovation and equipping of dispensaries/Medical Centers, HIV care and treatment and mitigation of impact through OVC program.
Empowering the community to own the activities post the trial period can help sustain the relationship in resources limited settings. Ownership will take place if the engagement was initiated right from the start of the trial and broader stakeholders involved.
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In my team there is an increasing awareness about the importance of engagement with the different stakeholders and this has become more of a topic of conversation nowadays, which is great! We still have a long way to go regarding the implementation of active stakeholder engagement, but at least we are shifting in that direction quite quick now.
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Interesting thread!
Erica, this is such a great example of an issue or allegations that threatens to stigmatize trial participants or undermine support for a trial — and potentially on a broad level.
A trusted media partner, like Terfa suggests, is a great resource for ensuring that accurate messaging is disseminated in the community! You can also engage the CAB, key leaders, and other trial sites to prepare Q&As –materials that outline these crucial questions or issues, so you have responses that are already written out in advance. You can even consider pre-testing your responses or messages with your trial participants to ensure that they are clear and understandable.
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Hi Clever–
The KEMRI research team in Kenya has some excellent lessons learned working with MSM in a criminalized environment.
A good case study which summarizes their accomplishments is documented in amfAR’s best practices guidance in conducting HIV research MSM in rights-constrained environments… I attached the document to this post!KEMRI ensured their CAB had MSM community members. They worked constructively with the police and media and even helped establish an advocacy organization called the Mombasa Movement for Men as part of their overall engagement strategy. So check out this information and again, consider joining the CoP for more opportunities for dialogue on this subject!!
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Denver and others:
Learning about one another’s expertise is also a key benefit of this course. For example, I know that Desmond Tutu HIV Foundation in Cape Town has been a pioneer in the engagement of adolescents in biomedical HIV research. So reach out to Wadi and her team (look at your learner profiles!) You can also link with researchers on the topic of adolescents in research (and others!) in the GPP Community of Practice…. watch this space for more detail!
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@Erica, This just happened to us at the site. The best way is to identify the authentic success of information for any community and saturate that source or sources with accurate and up to date information such that the opinion of a negative deviant will be investigated by the people who are gate keepers and have the influence to speak in your favour.
If the population is an urban heterogeneous environment, the media will be the best place to saturate with quality and up to date information. If the community is homogeneous then you need to saturate the leadership with saturate with accurate and up to date information.
We only interviewed the people within his circle of influence and saturated them with accurate information and the situation was addressed naturally.
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Safety first. First to place a call to any of the members and find out about their safety. The PI should be informed to immediately convene CAB at a secured place to initiate the process of investigation and issue management planing.
Most often the staff at the facility are also at risk so safety SOP need to implemented immediately with security doors at the entrance.
Before starting the study, the team is suppose to do community mapping and establish code of conduct in public places to avoid unnecessary attraction.
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A measurable indicator or metric of success of community engagement is sometimes only the absence of a negative situation. So like some of the examples mentioned here, approaching the group/stakeholder which was previously not engaged correctly in an open way seeking cooperation and resolving the situation. Most of the things that goes “wrong” around research are due to a lack of knowledge or understanding. Once this is cleared out and discussed and an agreement reached, the absence of the issue is then your measure of success.