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Initially I knew that engaging stakeholder was important but I didn’t know to what extent we had to engage with them. I knew the mechanisms but I didnt know why or the benefits engaging stakeholders in a study.
I’m extremely excited by what I’ve learnt in this course. It’s all about the stakeholder! It’s all about the community! The success of any study hinges on the success of the trust relationship built with the stakeholders and communities. If research teams widden their scope to look beyond the facts and figures and actually look to serve the community they are working in, it leaves a lasting impact and causes social change. And finally I’m looking forward to working on the M&E component.
There wasn’t any one thing that surprised me rather than a coming together of different aspects and seing how the whole study process and GPP come together and compliment each other.
Thanks Anne and Jessica for communicating your passion for GPP to me. Thank you also for your patience.
Over the years we have built good relationships with the community to the extent that former study participants regularly visit our study site to find out if there is another study they can particite in or if there is anything else they can help with. Apart from this we maintain communication with key stakeholders via email and phone. We also take part in events and activities organised by the community.
At the risk of sounding repetitive, to ensure the wellbeing of our participants we would ensure they receive treatment/or counselling if needed. We would also follow up with the police to ensure a case report is open and request that they be vigilant in case of any further violence. At the same time we would engage our CAB and intensify our community education and sensitisation. Although we would target the general public we would pay particular attention to the night club and surrounding businesses (e.g. restaurants and shops).
This incident was unfortunate and I’m not sure if it could have been prevented assuming that we carried out community awareness campaigns about the study. There will always be misconceptions and misunderstandings and all we can do is continuously engage communities and take advantage of opportunities to sensitise community members about the study. In order to expand our reach we could have held more mass media broadcasts, handed out flyers in public places like malls and markets.
Mark this is a great response to the questions. And the definitions of “implications” got me thinking abut my responses in those 2 contexts.
What implications did the lack of inclusion of clean needles in the prevention package have on trial results?
The results sparked global excitement for the evidence for PrEP efficacy was revealed which in the research circles was a win. However, the concerns of key stakeholder groups were completely ignored throughout the duration of the trial. The first major concern was the research team’s utter exclusion of stakeholders groups when planning, negotiating and ultimately deciding on the HIV prevention package. Because of the prevention package some advocates and researhcers questioned the legitimacy of the study. Other concerns included the absence of community consultation during the design and development of the protocol; the uncertainty of care for seroconverters and HIV-positive individuals who were screened out; and the lack of protection mechanisms for participants within the unpredictable national context. The lack of sustained, collaborative partnering between this research team and these key stakeholder groups resulted in a discord between the two entities, with doubt about future stakeholder support for any further PrEP research and its potential roll out in Thailand.
How can researchers engage stakeholders to better negotiate comprehensive prevention packages tailored to the needs of diverse subgroups?
Involve key stakeholder groups right from the beginning to the end of the study! Be transparent and get stakeholder input where it is needed and keep them informed of every step in the study process.
I have not experienced a protocol being sent to the site as a final document – it is always in draft form to allow for input at site level. However, if this happened I would imagine that CAB members and relevant stakeholders would extensively review the protocol and the concepts that would be difficult to grasp would firstly be explained further and cautiously considered when preparing the ICFs and participant outreach materials.
Any training needs relating to the protocol content would need to be assessed in order to ensure that CAB members provide meaningful input and participation in the study, they need to be well equipped with relevant knowledge and skills.
Our study has a website and this has proven to be a great and convenient way to communicate information about our study. we are able to provide updates on study progress or recent research evidence on the study topic effortlessly and it allows users to provide feedback or ask questions about the study. Although it is not an interactive site we do have a contact section where users can send enquiries about the study. We have not yet discussed the use of social media because of the potential harm that is associated with it particularly with misunderstood messages. We might use social media at a later stage once a strategy has been outlined and messaging refined.
Choosing which stakeholders to involve depends on the target population for that particular study. Our CABs are our primary source of information when it comes to identifying relevant stakeholders. We also refer to district and national HIV-related directories; receive recommendatiosn from other stakeholders; use existing databases of stakeholders; and also carry out brainstorming sessions within the team.
Hi Bernice,
this is interesting. I’m curious to know if you go to the Bale for just one study or you have conducted several studies in the same area. Is the Bale involved in the formative research or do you go to the community and engage them once he has given you permission?
How have you involved community stakeholders in formative research activities in your context? If you haven’t, how could you potentially involve them more meaningfully in the future?
Our Pevention CAB is a great resource and we involved them in formative research activities. They reviewed the study protocol, recruitment materials and helped structure our messaging for the study. The CAB members were very instrumental in identifying and refering us to key stakeholders in the community such as Ward Counselors, members of NGOs and CBOs and community gate keepers from formal and informal settlements. The CAB also suggested upcoming events that presented opportunities for icnreasing awareness of study and the different contraceptive methods that would be available. They met and still meet monthly to provide updates from the community eg myths and misconceptions arising from the community, and we provide them with updates on the study progress.
Hi Jessica, yes sure. With the funding we were able to hire a dedicated person for the stakeholder engagement. This person was able to manage our database of stakeholders and coordinate activities such as consultations, workshops, outreach campaigns, CAB meetings – these re-ignited the interests of stakeholders and got the conversation going again. Most importantly, she kept to a schedule for engagement for each of the different stakeholder groups.
Various stakeholders, both local and international, were engagenged at different stages of the planning phase of the study. Our team planned to provide updates on the progress of the planning phase and get input from the stakeholders on aspects involving community engagement. Unfortunately because of several reasons including the lack of a dedicated person to maintain communication with stakeholders – communication with the stakeholders was irregular. Some stakeholders became suspicious and thought the team was hiding information, others lost interest and stopped participating. However, once funding was approved and dedicated personnel hired, stakeholders are updated regularly and there is a constant stream of communication between our team and the stakeholders.
