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Topic
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Think about the activity you completed in Module 2 that distinguished between GPP goals, objectives, and activities. Take this opportunity to ask any questions or get clarifications about distinguishing between the three terms.
–Describe a benefit that you have experienced of conducting stakeholder engagement. For your example, list a measurable indicator or metric of success.
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Replies
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I have leant a lot concerning stakeholder engagement and it’s broader perspective in clinical trials. One immediate change that I would wish to implement is the mapping of the stakeholders required in a clinical trial and involving them in all the processes. There has to be a budget for the Community stakeholder engagement. GPP course is empowering us both in knowledge and skills.
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Community engagement is critical for any trial being implemented. In fact community should be included from conceptualization, implementation, study close and the release of study results. Community stakeholders know if a study will or will not succeed in a specific area therefore their guidance should be included from start to finish.
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Wen we were conducting community engagement in our community we realised that the is an educational gap about research when it comes to our health service providers specifically professional nurses. this has led us to structure our community engagement/education plan to continuously educate nurses and also student nurses about clinical trials and ethics involved in clinical trials ( this group is was the most influential group to discourage the community from participating in clinical trials). This strategy has helped us to reduce misconceptions about clinical trials and participating in clinical trials it has also helped with recruitment as nurses have become willing to refer participants to our site.
A secondary and yet equally important benefit is the ability to community with different populations within our community such as LGBTI, religious and traditional groups that do not believe in modern medicine. we are now aware of the expected challenges and how we can overcome them as we are slowly building trust with the above mentioned groups.
LGBTI: we managed to receive a training session for all staff from an LGBTI representative (OUT well being clinic) on how to engage the LGBTI community the different identities within the LGBTI community, sex as a form of identity and as an act.
Religious groups: the first challenge we encountered was gender inequality, abuse and violence for example 14 year old girls being made to drop out of school and forced into marriage.
women being discouraged to seek out contraceptives as well as medical services without the supervision/consent of a male
Traditional healers. their still traditional healers who advocate for HIV being a whit mans disease and that they can cure it. in most cases they classify HIV symptoms for that of a ritual,ethnic or ancestrally calling that requires for the person to become an initiate to be a traditional healer.
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Hi all,
As a study we invited the CAB as a key stakeholder to visit our labs, this process assisted to eliminate speculations that go with drawing of blood. The CAB is now able to explain fully to the community the pathway of blood samples. The other key stakeholder that we engaged are communities living with HIV. This relationship has helped us gain more information on the general expectations of this community. We have also been able to grow this relationship by training representatives of communities of people living with HIV. This has been a great opportunity to share research literacy which will in turn be rolled out to the various organisations of communities of people living with HIV.
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Hi every one,
Module 2 was interesting and empowering to me and to our Organization. I took long to finish the module assignment since, I kept on reviewing the information time and again. I work in the same organization with Charles and for sure we have been involving the stakeholders only when we want to recruit the study participants or when we are in a crisis. Among the GPP Principals , Trust and Mutual understanding were very interesting to me.
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I think I agree with Charles. We only engage with stakeholders when we busy with a trial and we actually need to keep the communication going. It is hard to set a SMART objective. I am learning some interesting things here. I would agree with Edna as well in the question asked by Heidi. I believe according to GCP guideline if you are going to involve participants in a research trial, you must have a plan that will be beneficial to the participants after the trial and one of them is o give HIV treatment and care and it can also be done through referrals to other facilities if your research centre can not provide.
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When FACTS 001 was preparing for dissemination of results, we held dialogues with stakeholders to discuss the following:
1. Possible scenarios of FACTS 001 results
2. Messaging of study outcome
3. Stakeholders input on developing results dissemination strategy
Even though FACTS results were disappointing , what I am grateful for is that our stakeholders were informed and prepared for any outcome. I believe this process helped us manage expectation well.
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Hi everyone,
Describe a benefit that you have experienced of conducting stakeholder engagement. For your example, list a measurable indicator or metric of success.
one of the benefit that i have experience with stakeholder engagement was when we straggled with partners of female participants. female participants had problems attending some of their study visit.
We partnered with organisations that work with men and invited the police. we organised games, spoke about research and community involvement and police spoke about crime and their need for community support. from that community event we experienced a higher number of males who participated in our research studies. We had successful events were participants invited their partners to our site.
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Hi everyone:
your feedbacks and examples are extremely valuable to me (working at a global level): your examples and experience enhance my understanding of the many local challenges you are facing.
I also have a question for you: per GCP guidelines, subjects should not be coerced to participate to a study. In this light, have you ever faced concerns (eg raised by Ethics Committees) around offering HIV preventive methods by a study sponsor? If so, how have you handled this situation, any suggestions around framing/ communicating this topic to ECs?
Look forward hearing from you!
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Hi Heidi,
We actually have the opposite situation with our ethics committee. They request sites to provide adequate preventive methods for HIV vaccine trials participants. Their biggest concern , I believe, is how the site will ensure that participants are still able to receive adequate preventive methods after the end of the trial. One way to go is to provide methods that are available in the National Health System, that could be reached by the participants after the end of the study.
Regarding benefits of conducting stakeholder engagement:
Once, we had a rumor about buying blood in one of our studies. Some participants had the impression that the compensation given for transportation and for the time spent on the research was actually to buy their blood and the rumor was quickly spreading within the community surrounding the site. We immediately asked for support from the CAB that was well informed about the study and the reason why compensation was given. Our CAB, together with the site, actively engaged in establishing meetings with local community leaders to explain reasons to compensate participants as discuss strategies to revert the situation. Some of the suggestions were to have forum discussions with participants, others were to discuss within local community meetings. After a couple of months, trust was rebuilt. This could not have been achieved without transparency and mutual understanding between the site and stakeholders.
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Lesson 2 module 2 assignment is challenging and technical I plan to spend more time on this topic to fully understand. I have learned that we have not been engaging stakeholders in systematic ways going to them only when we need to recruit participants for our protocols, hardly involving them early in the process. We have engaged stakeholders previously to address challenges that have arisen which is fire fighting instead of fire prevention. One of the challenges that will need to be addressed is having adequate budget for stakeholder engagement to create a supportive environment for HIV prevention research. This training is critical in improving our stakeholder engagement, I am happy to have enrolled.
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Lesson 2, module 2 assignment was challenging as it required analytical skills and time to complete it. I may need to read the sections again to improve my understanding of the principles and scope of GPP. I look forward to the webinars where we may discuss the principles and section three. Thanks for the great module explanations.
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For me, the benefit of stakeholder engagement has been about teaching the community about HIV research. I have found that even though knowledge does exist in the community, more still needs to be done in reaching other communities and spreading the word about what we do to the communities. I have found that the community is dedicated to finding other forms of HIV prevention and want to be a part of the solution. The more we do community engagement the more we are able to dispel myths about HIV and research and thereby create a transparent environment and reach mutual understanding in the community.
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The module has helped me understand the differences, i think i can now be able to write up a very good proposal. I got to understand that goals are the big picture that one should look at when engaging stakeholders, objectives are the specific results out of stakeholder engagement, and the activities are the different actions you put together to achieve the objectives and goals.
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Benefit received from stakeholder engagement in a rural areas Ugu North District Durban SA
Was understanding the lifestyle and how the community operates – Learning to adapt and fit in.
The work ethic is different from the city.- Learning to adapt skill wise .
Understanding resistance – Learning to be patient regarding different communities.
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The benefit I have experienced from stakeholder engagement are trust and mutual understanding.
In the process of Key Message Development, stakeholders were invited, some stakeholders from an organisation that we partner with, did not show up even after invitations was sent severally to them.When the final draft of the message developed was sent for approval, they rejected it without looking at it. The community engagement team paid advocacy visit to the Director General who was the head of the organization we were working with. When we got there, we gave updates on the study and other activities, leaving the rejected drafts for last,giving him the materials that were developed. After looking at it and asking questions he approved that the drafts can be printed as our key message for the trial. This was March this year.
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The benefit I have experienced from stakeholder engagement in my working area is transparency and mutual understanding. There was a rumor/misconception about HIV vaccine trial in the community where we had recruited most of the participants who participated in this trial,it is not clear how the rumor started but they were told that all individuals who have been vaccinated will die with in five years to come. It was quite hectic in such a way that some of the participants were reluctant coming for their subsequent scheduled visits.The research team organized a small meeting with Stakeholders including community leaders , local government authorities, some influential people from the area, two CAB members, (one of them was a former trial participant). The team explained the trial in details, they had the protocol, ethical clearances from the IRBs and other necessary documents from the authorities allowing the trial to be conducted. The team give time for questions from the stakeholders and all question were answered to their satisfaction. There after the area leaders helped the research team to organize a large community meeting and all trial participants were invited the team was given an opportunity to explain and respond to all questions at the end there was common understanding and trust was regained between the research team and community,then everything went back to normal.
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The benefit I have experienced from stakeholder engagement in a rural community where the organization conducted clinical trials and other HIV related research was that of trust, integrity and mutual understanding which are the principles of GPP.
The rural site was to be closed after a decade of research with the community resulting in developing partnerships with traditional leaders. The community stakeholders and members of the community working group (CWG) which is equivalent of the CAB were informed of the closure which was linked to end of trial, funding and staffing logistics. The study results were given to the stakeholders and CWG members by the PI while results were embargoed and the traditional leader said that if anyone disclosed the information, they will appear in the tribal court. This was a true reflection of the community and researchers understanding norms and the research processes by both groups. There was trust and integrity displayed by the community as they maintained confidentiality until the results were released to the public two days later. I share this story at all community events to highlight the impact and benefits of community engagement. There were no negative rumours after the results were released and a CWG member and participant volunteered to speak to the media about their experiences in the trial. These measurable outcomes of maintaining trust and having an understanding of the processes contributed to the success of sharing trial results with the community while these results were embargoed This event took place about 8 years ago.
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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.
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Respect for the research team. Somehow stakeholders in their wisdom tends to respect researchers who carry them along in study design because it is a learning opportunity for them and as custodians of social, political and leadership mandate, they fill a sense of responsibility and fulfillment.
In one instance the CAB requested for a toll-free line and we immediate got that set up. They were excited that we are transparent in our operations and willing to answer questions from the public.
For CAB, the main indicator is meeting attendance.
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Module 2 was very useful in getting me to think about better distinguishing goals vs objectives vs activities in my work. Sometime I think the line between goals and objectives can be a bit blurred, and I felt this module provided a good thought exercise to more clearly articulate these messages.
–Describe a benefit that you have experienced of conducting stakeholder engagement. For your example, list a measurable indicator or metric of success.
I’ll share a hopeful benefit from stakeholder engagement I am currently in process of conducting. Note: I do not work in the research/clinical research setting, however, I am finding more and more that GPP is a way of thought that can be applied broadly to other aspects of work/life. That said, I have worked to make stakeholder engagement a priority for my organization as we work to develop new projects and programs. Currently, we are developing a new patient and advocate training program. We are using surveys and one-on-one consultations with stakeholders (including patients, advocates, researchers, and others) to get gauge interest in the material we plan to cover and get input on prioritizing topics for the curriculum.
These stakeholder consultations are a critical part of the development process for us, because this will help ensure that the program we are developing will fulfill areas of need as identified by the communities we are serving. We plan to follow-up with the stakeholders we are engaging now in this initial survey throughout the development and implementation of our training program– this will provide a way to gauge “success” of the program and ensure the program sufficiently addressed stakeholder needs.
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