Micky Hingorani
Forum Replies Created
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Social media has never had any impact on our site due to the nature of the targeted research participants. Majority of them are illiterate and/or with low access to the smart phones. We do not engage with the general media in our research process though we invite them during our major events such us World AID’S Day activities.
One time we had a sensational media report coverage in our site concerning a couple who learned that their daughters had come to our site to sell blood. They came and created a scene which attracted the media and the general crowd. They went to the police station to report that their daughters had been bled to death and they were under age..
The police accompanied them to the site and discovered that the two daughters were alive and healthy aged 20, 22 years of age with children
In response to this, we called for an urgent CAB meeting where we addressed the matter and gave them a clear picture of the whole situation. The CAB then planned for a meeting with the local community leaders and the National local media house representatives.
The correct information was given and time was given to ask questions and address their concerns.
This course will empower us on skills of Communication plan,to train CAB members and the research staffs on site’s communication and issues management plans. I feel great.
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We missed this discussion questions in the forum last week and are now contributing belatedly.
Social media has had no impact on trials in our site so far, basically because of the literacy level of our participants and that the majority of them do not own smart phones.
We have on one occasion experienced sensational adverse coverage by the media. A couple was informed that their two daughters were in our site to “sell blood”. They live 12km away from the site they quickly came and created a scene at our gate attracting a huge crowd including the press. They proceeded to the local police station and reported that their under age daughters were bled to death in our site.
The police accompanied them and established that the daughters had come to inquire whether the could participate in one of our trials, that they were aged 20 and 22years were well and had not even consented to participate and that they both had children. The following day press ran sensational report POLICE STORM A US MILITARY RESEARCH FACILITY subsequent to this we called an urgent CAB meeting where we gave them the true and clear picture of the situation. They then convened a meeting with all local community leaders, and all national and local media houses represented. The correct information was given and time was given to answer questions.
As a result of this training we have now learned that there is need to give communication training to the CAB and site staff so that together we can all develop the site’s Communication plan.
We do not engage with media as general practice though we work with them to in Planing the World AIDS Vaccines awareness Day and World AIDS Day, where we use the international Athletic star who come from the region to participate in competitive races to mobilize the community. We also use the WAVD as our site open day when the public including the media can tour our facilities
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For our site in most cases the protocol are sent in the site in final form, however just before submission to the ethical review boards we normally translate the Informed consent into kiswahili and in a simple language for a non scientific person tho understand. The PI of the study or the designee presents the study to the CAB members ( i.e. the tittle, aims/goal, objectives of the study, inclusion /exclusion criteria, duration, number of visits and some basic study procedures) in shwahili, the members gets time to ask questions and discuss the study. there after the members are given the Informed consent to review, normally they are told to comment with in two weeks so that not to delay submission to the ethics. If there are comments we include in the final document and submit to necessary bodies. In a later stage when the study is about to start and we have got all the necessary approvals the site conducts an information seminar to the media personnel and if necessary prepares a press release. Then organize another information seminar for the Local Government Authorities, community leaders and other Heads of Departments in health at regional and district level, where the study is explained again in simple language and as usual time for question and answers
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Great inputs!
I have a follow up question about a key participatory practice for Communications Plans– since ALL staff members, trial participants, and CAB members have a role to play in communications and serve as ‘ambassadors’ for the trial — do you currently conduct any media or communications training to prepare them to answer questions about the trial? And how are you capturing your internal and external communications strategies? Are they contained in your broader engagement plan or as a stand alone plan, for example?
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As the community engagement prepares for each study a CAB is created. Member of the CAB representative or have extensive knowledge of the priority population being addressed in the protocol. My team feels it is important to formulate CAB that can provide informative feedback to the research team as they gear for study design and implementation.
I agree stakeholder engagement can be challenging however an effective plan must be upheld to foster the appropriate deliverable. Additionally, it is important to know when stakeholders should be included in the research and when their presence can be omitted.
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Formative research assesses the community any potential study will be implemented. This information is important as it will determine if a study will be accepted by the community and will enrollment be successful. It is my position that every CAB should be study specific. For instance if a study is recruiting black MSM and transgender women it is important to have the same representation on the CAB.
It is important to engage the community of various research approaches. Community engagement should be implemented even when a study is not currently active or enrolling.
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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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At my site we have never experienced issues with the media, but we have had good coverage from them when we have had our community events.
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Community service protest rarely occurs in our site, for instance in the past 14 years I have been living in this area it occured once like 4 or 5 years ago, and actually study visits were affected because the participants were unable to come at the clinic as all roads were blocked. Soon after knowing about this event we phoned all participants who were supposed to come on that day and the next day, we gave them other appointments depending on their window periods and it worked just well. and as for solving the problem actually the research site could not do anything because it was the matter of the Municipality and police to release the chairperson of people who were doing business in the one of the big markets in town due to reluctance in paying certain taxes. So the site only had to wait for the responsible authorities to work out the matter
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1) How has social media and online communication affected your trial communication planning and engagement strategies with stakeholders?
depends on the area.it takes time mapping out what can go wrong and interpreting what the local community might say. engaging with stakeholders on issue management and communication plans.some rural areas might not be affected.
2) Have you ever experienced unexpected issues at your trial site or in your research context? How were they handled? What lessons were learned?
working with CABS help for unforeseen circumstances but for unexpected issues consult with the cabs for solutions or way forward.
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Social media and online communication are key elements in some US trials, beginning with recruitment through trial completion. The benefit is to be able to discuss information clearly and thoroughly in a way to minimize misinterpretation. On the other side, responses may need to be almost immediate, which an cause a challenge.
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So far in our sites ocial media have not affected community engagement strategies or activites due to its minimal use in the area, not many people own smart phone or have access to internet.
In our site we experienced a romuur related to blood draw from participants, it was said the blood was for sell to the USA by the research site, and the issue was that the site was compasating particpants with small amount of money while they are getting lots of mone from the whites.
we had to call a meeting with study participants, discussed with them, explained that the blood drawn was for research purposes and there is not possible to sell of the blood of less than 10 mls from different people, you can not even donate to someone. Then there was a meeting with the community leaders together with CAB members to explain the matter. There after we conducted 3 radio talk shows where the study physician were explaining and responding to questions. so most of people understood and especially when the study participants were okay, the rumor was cleared.
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Managing stakeholder engagement and multiple partnerships is definitely difficult, but it is also critical to the success of much (if not all) of the work I am involved in with my organization. My colleagues and I work to do extensive stakeholder mapping at the beginning of any new project/initiative and work to outline which different roles (e.g., partners, collaborators, advisers, working group members) for stakeholders. Those we identify as potential partners or collaborators include other groups with parallel efforts and/or missions–this allows sharing and pooling of resources and expertise. Those we identify as advisers include prominent individuals with influence in the various stakeholder groups they represent–this helps to ensure the needs of different stakeholders is reflected in our work, and also helps with communicating progress/results from our work back to those stakeholder communities. Early engagement is key to ensuring sustained “buy-in” and prolonged partnerships–stakeholders are more likely to be committed to an effort when they have played an active role in helping to shape a project/program, and as such would be more invested in the long run to success of the effort.
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<span style=”line-height: 1.5em;”>Formative research and community engagement for a trial are intrinsically linked. Formative research helps to lay the groundwork for effective communication with community stakeholders. Formative research is a critical step that includes identifying key stakeholders and thinking through the role that different stakeholders can/will play in supporting trial work. Stakeholder mapping work done in the formative research stage can greatly facilitate implementation of a stakeholder communication plan during the trial.</span>
With my organization, stakeholder identification is a key formative research step. Stakeholder mapping exercises are crucial to overcoming this initial challenge. Without this, it would be easy to start down the road of getting feedback and input from stakeholders and stakeholder groups we are already familiar with. However, often, some of the most valuable insight is gained from stakeholders outside of the “usual suspects” that we know, or have already worked with in the past.
Other formative research activities we have utilized includes stakeholder surveys (e.g., needs assessments) and stakeholder meetings. Both of these help us to bring diverse stakeholder perspectives (e.g., patients/advocates, industry, academia, government) to the table so we can work to align the needs of all as we develop a new work initiative/project. This formative research step is a critical component to the work because it helps to ensure that all stakeholder views/voices are reflected in the project we develop.
In the past, community stakeholders have been asked to provide input on survey questions before finalizing and disseminating more broadly. In the future, I see the role and opportunity for input of community stakeholders growing, especially as we develop project with more of a focus on patient engagement. For example, we are developing a new patient and advocate training program, and we expect community stakeholder input received during stakeholder meetings to directly inform the topics and format for the program.
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While I do not work on a research site, I feel the majority of my colleagues here at the Reagan-Udall Foundation do understand the value of stakeholder engagement. As a smaller (~8 full time staff), and relatively young organization, we have spent a lot of time working to articulate our core principles and goals of the organization. One of these is to ensure broad stakeholder participation in all of our projects and programs—this way, we can work to ensure that diverse perspectives and expertise is brought in to support and enhance all of our work. Another thing we have started doing at the outset of new initiatives, is informal interviews with stakeholders to assess needs, concerns, and issues for a given topic (comparable to the formative research stage in GPP). In this way, we can work to align stakeholder needs at the start of a new initiative and ensure the new work effort focuses on common challenges and goals.