Lesson 1 Discussion Question

Community Engagement is often perceived as being only about recruitment, but I have been discussing with team the importance of community support to the study i order to prevent future frictions and assure a smooth process. I have been highlighting that support is only gained when there is an proactive and transparent process of debate, and then the time we invest now will be compensated in the future, with long lasting effects thorough future studies.

I am very fortunate to be employed in a rural area where no one can do anything without someone’s approval, The site is aware that the success of the study depends on the stakeholder involvement and its input, as some one who is the go between both parties rely on me. To archive a common understanding I used a transparency method. if and when there is any update from the sponsor the stakeholders are called in for the meeting or a conference call so to share the information and it has worked for me.

According to the GPP guidelines, the term “stakeholder engagement” refers to the processes through which trial funders, sponsors, and implementers build transparent, meaningful, collaborative and mutually beneficial relationships with interested or affected individuals, groups of individuals, or organizations, with the ultimate goal of shaping research collectively.

A project is successful when it achieves it’s objectives and meets or exceeds the expectations of the stakeholders. Each stakeholder engagement has a unique purpose and is influenced by several factors. First and foremost, common languages and common processes would be generated and understood amongst leaders and team members. Leaders and team members should be involve in the planning process. The leaders and team members should be involved in routine capacity training where baseline understanding about stakeholder engagement would be focused. There should also be proper collaboration. It is also important to identify all stakeholders and their roles.

An approach I employed was to develop a concept note for team members and a reporting schedule.

A clear understanding of the ultimate goal of a project by leadership and team members is critical in identifying key stakeholders, their roles and engagement in achieving a successful project. Stakeholder engagement isn’t a onetime event but an ongoing process. Activities like training, Focus Group Discussions etc in an enabling environment with effective feedback mechanism that allows room for improvement and encourage contributions is required in achieving successful stakeholders engagement and its values.
For instance, during the last year, trained community stakeholders were allowed to participate in training, sensitization, recruitment activities etc. These help us ascertain the depth of their knowledge, spark creativity and foster community ownership of implemented project.

Its a question of ensuring that the team understands our role in stakeholder engagement more than anything. a way of going about is that you develop a stakeholder engagement specific plan and whilst developing the plan you also seek their input in order to ensure that they are informed and have sense of ownership towards stakeholder engagement and its values, you make sure that your plan is well communicated amongst the team and you make sure that they are part and parcel of the implementation of the plan.

In one of our meetings we once had a colleague say;”thank you for inviting us and acknowledging us as it has elaborated to us where we are going and as a result it has increased our commitment”.

An example of an approach that we employed was that on the development of our CAG/CAB plan we involved our site PI and other team members, this ensured that all decisions were done collectively and that makes way for collective commitment in the implementation of those plans. We also invite our site PI and one member of the community engagement team regularly to our monthly CAG meeting. This ensures that as we develop plans and communicate all parties are involved in implementation and commitment.

stakeholders engagement is very important and also their understanding of good practices. Many times the leadership and team members from sites did not understand that community value. In my case, I had the opportunity t proved the stakeholders engagement when we were running the iPrEx study. We conduct more than 10 CAB meetings so cabbies had the opportunity to reviewed, understand and made recommendations for the protocol an inform consents. all these meeting had the participation form the investigators and team members. We also develop a communication strategy to had specific interviews and community meeting with LGBT and other community stakeholders. Our strategy also included meetings with other stakeholders as health providers. As much information you can spread is better.

While we endeavor to have this understanding, it is often a low priority for principal investigators. Investigators must present to our CABs at least once or twice a year, but this is insufficient. We will be instituting mandatory GPP seminars for post-docs and seed grant recipients doing human subjects research of any kind in the coming year to encourage good participatory practice and stakeholder engagement.

Two situations in a team setting that bother me more than anything are miscommunication and team members that work in silos. The only way to ensure that leadership and your team members have a common understanding of stakeholder engagement and its value is to review it with the team at the beginning of your project. Have them help you to identify the stakeholders and review how best to work with each of those stakeholders. Also, review how each of the functions represented can work together in this team dynamics. When I start up a new trial one of the first things I do is hold a team meeting to ensure everyone understands from which other functional platforms the team members are, what their role is on the team and how each of their roles affect the others.

A team is a group with a common goal, but lots of groups have a common goal. And a team works together, but lots of groups work together. While stakeholder is the “person, or organization that is actively involved in the project, or whose interests may be positively or negatively affected by execution or completion of the project. A stakeholder may also exert influence over the project and its deliverables.The first is putting together a team from scratch for a specific purpose. That purpose may be for the short term or much more momentous and lengthy .But the team members and leadership are in the position of borrowing resources, while the stakeholders control their resources. So their relationships with stakeholders are especially important. If their relationship is good, they may be able to consistently acquire the best staff and the best equipment for their projects. If relationships aren’t good, they may find themselves not able to get good people or equipment needed on the project.

My first experience ensuring that leadership and team members have a common understanding of stakeholder engagement was in a previous research called Muriel Project, a cross-sectional study that measured the vulnerability of health needs and access to services of the transgender population in São Paulo. We aimed to develop a communications strategy with broad community participation. By that time, the information available to conceptualize representativeness of transgender individuals in Brazil was scarce. We started the study conducting a formative phase to identify leaderships and promote activities and discussions. That was a process that allowed researchers to connect and learn from stakeholders to think through a new perspective. Also, some of the stakeholders involved in the Muriel Project suggested questions that could be explored during the study and use the results to claim inequities in access to health in Brazil. The project became a transdisciplinary study group composed by researchers and stakeholders to discuss human rights and health of the LGBT community in Brazil.

My experience was slightly different from most of you guys because we had 2 PIs, 2 Post Docs, 7 PhD students, 2 MPhil students meant that I had to ensure that they worked as a trans-disciplinary team, which was not easy. Our sights were in SA and Zimbabwe and both were research naïve with very little experience of CSE. The challenge was get everyone in the team out of their academic silos and bring them together with very naïve community and stakeholders. The PIs had vast experience with CSE in rural communities whilst I was more used to the urban type of CSE and having a department dedicated to doing this work. The PI first organised a teambuilding exercise for the research team before we could even interact with the community. The concept of CSE was introduced to the study team. At first they wondered why they had to be part of the CSE plan because they saw it a my business because I was primarily working on CSE for my PhD. After some role plays and discussions of scenarios and showing them the work involved we then agreed on specific roles for each team member. As we started fieldwork , yes there were challenges and I had to chip in here and there because I do subscribe to the idea that not everyone has “people skills” or can easily connect with people outside their usual academic silos. In the end we had to work as a team because things like CAB meetings , community workshops & trainings needed all of us to play our part. We even saw the most “complicated” part of our project being communicated by the tea leader in a very understandable and culturally sensitive manner. We had teething problems but in the end we all now appreciate the value of actually planning for and budgeting for CSE.

it is important that we bring on board all those people who will be involved in research not only the staff members but all stakeholders to ensure that they are taking a leading role. When i was planning for my study on strategies to improve uptake of HIV counseling and testing as part of my MA , i established advisory body comprising young people, health facility in charges and a few community members who were managing the agenda of the group with my support of course it had limitation, first i had not taking this course, two limited resource as i was the sole financier. I strongly believe that this course will enhance my skills in engaging with the wider stakeholder in a meaningful manner.

Ensuring that all stakeholders from the upper most tiers to the all important on the ground staff, requires good quality and consistent information. The importance of stakeholder engagement is expressed across operational protocols and programme plans, which also allows for tracking of what is actually happening at site level and matching this across different sites. As it currently stands there are pre existing stakeholders which are prioritised across all sites, these are key groups targetted regardless of location. Additional stakeholders that are identified by local advocacy partners are decided upon in partnship with the community liaison officer who also assists in the formulation of appropriate activities. The role of the CLO is directly suppported by IPM who provide ongoing capacity building – as well as direct participation in activities to demonstrate support for work happening with communities. This provides a direct link to community members. The Chief Medical Officer for the study also routinely participates in stakeholder engagement activities, which makes a massive difference in terms of truly sharing a common understanding. This is an ongoing effort, requiring regular participation and commitment from all levels.

Stakeholders engagement is a crucial phase of a research, trial or project. In my organization team and other mates from working groups we always keep this on mind in the first steps of the project, and we use to discuss and brainstorm looking for the key agents of the field.
Also I use to train my team and other activist about community engagement following some main topics:

– Stakeholder mapping
a. Steps for mapping: identify, prioritize, visualize, engage, monitor and actions to take
b. Stakeholder matrix / key stakeholder grid
– Mapping stakeholders and community: practical part / exercise in which they develop a visual tool with all this mapping information
– Reality of the different communities
– Stakeholder engagement
– Strategies for a meaningful engagement

As I like to say, it’s better to look at one stakeholder too many, finding it to be irrelevant, rather than discover later that a stakeholder of importance to the project has been overlooked.

And also we work with a methodology in Apoyo Positivo, calls co-creation based on include all the key stakeholders in all the project / research phases: design, planning, developing, implementation and evaluation. We don’t want just consultation to stakeholders, take the information that we think is important with that conversation and then keep them out, We believe that giving a meaningful participation for the stakeholders during the process helps to get a better outcomes.

The team members and the leadership has to ensure that they always give support to the stakeholder by providing meeting space,photocoppying materials,scheduling meetings,ect.Other types of support may include, but are not limited to, providing food for the meetings, reimbursement for transportation, providing access to computer, printer and phone for use.
The leaders must respect and recognize the capacity and rights of all individuals to make their own decisions.engagement with the stakeholders should be maintained throughout the study process; from the period before the trial begins until the Data is available for and disseminated to the lay public. Engaging all relevant stakeholders as active and informed partners in decision making about the proposed research and its implementation enhances both the scientific strength and ethical truth of clinical trials..
Lastely trust that stakeholders can contribute and add value.

Luckily, my local team is already thoroughly convinced that stakeholder engagement in the clinical research process has tremendous value. Sharing of protocol specific case studies like the MTN-017 case study helps to further reinforce this value to my team members and to leadership in the HIV/AIDS Clinical Trials Networks.

Projects are shaped by different groups in the community, through the leadership and team members working together, ideas about issues will be shared and transformation strategies can be explored thus there should be constant reminder to the team members and leadership on the important of stakeholders engagement, also open door policy is vital by ensuring all voices are heard. .

Every member of the team and the leaders have to have a good working engagement. They both need to be in a round table discussion and highlight each others role in order to avoid misunderstanding and arguments. The leaders need to realize that they are to lead and not oppress, give everyone a listening here and ensure the smooth execution of the assigned roles to the team members but most importantly lead by example. Finally, the team members need to be attentive and committed to the duty on ground. All this is directed towards a successful stakeholder engagement.

Inviting team members to CAB meetings and providing feedback of CAB and stakeholders meetings to the team are helpful to increase awareness of the importance of stakeholder engagement.
I presented a report of CAB activities thorough the year, highlighting their contribution to the research process.
When I talk about the importance of community engagement to the quality of the research and development of our site, I always highlight that I am basing my points of vue on international recommendations like GPP and HANC recommendations.

A good working relationship and constant reminder to the team members and leaders about the importance of engaging stakeholders so that they can understand that stakeholder engagement is not just any engagement as it can help reduce negative and increase positive impacts in correcting any myth related to the study or organisation within the community. Before every study starts we would invite CAG members to review ICFs in order for them to make corrections/editions so that they can be in a language that the community understands.

I ensure common understanding within the leadership and team members by having regular meetings on the update of particular protocols which are already running, those which are being developed and those which are about to open. this gives us an opportunity to discuss and deliberate on different perspectives and predict possible scenarios which can arise during implementation. we usually have presentations of protocols to our CAB members who are also able to provide hindsight on some sections of the protocol. this approach has helped as to achieve our objectives.

In ensuring that the leadership and the team members have a common understanding of stakeholder engagement, one has to give proper and clear information because it goes a long way in making them work efficiently and well. It also important to make them see how important they are and give room for ideas, suggestion and insight. i did a research on adolescent that are sexually active and how they see the use of condoms and a way to make they see reason why they need it and in doing that i had to involve the adolescent, some parents and my colleagues at work and it really worked because i got to know a lot of new information both from the parents and the adolescents.

By disseminating complete, correct and accurate information, since information is power we must ensure that we are informed at all times and make sure that we manage information explosion so as to eradicate obsolete information and give room for new ideas to set in. I must also conclude by saying ”No information, No life. there would be a lacuna if information has not satisfied those who thirst for it. thank you

I believe in consistent engagement between team leaders and the community members, There should be on-going mutual respect, transparency, and accountability. Our site P.I visits our CAB four times in a year just to touch base, give study updates, and get feedback from the community, Most of these meetings are educational and both the community and research teams alternate in providing presentations, Research teams are from the scientific back ground and welcome this opportunity to learn about the respective communities where their research takes place.

I think it is important for the leadership and team members to work together to define what stakeholder engagement and its value mean to them. Starting on a common ground can help ensure understanding. There should be open, honest communication and transparency between the leadership and team members allowing for everyone to provide their own input and suggestions and making sure all voices are heard. An atmosphere of respect and collaboration will ensure a common understanding. An example would be having an “open door policy.” This policy encourages effective communication and healthy discussion. The leadership is open and available to discussion and feedback that demonstrates respect and openness among levels creating a sense of common understanding.

I think that, not only should there be regular feedback from Clinical staff as a standard, but also structured feedback from the community to the CRS leadership.
During last year we allowed our Clinical Recruitment staff to present a session to our youth CAB about a study protocol, who then had to develop a roleplay which demonstrated their understanding of the the study, presenting it to the General CAB.
This is a useful example to demonstrate that youth can be catalysts of change in that they can play a role in educating adults, and can contribute towards creating an environment where they can be change agents. This exercise was useful because CRS leadership could then gain insight into the thoughts and concerns of CAB members.In our CAB we conduct regular assessments pre and post training interventions to asses the effectiveness.

By creating an atmosphere of a smooth working relationship with the leadership and team members. team members should participating the planned meetings with stakeholders because the leadership is accountable for the active functioning of the team. i once had the privilege to hold a campaign on programming for people with disabilities, and i made sure that i carried every other staffs in my organization along, the involvement of other staff made the campaign to successful and productive.

By respecting each other and not undermining other people because respects build a good relationship and it goes a long way.
Transfperancy by being open ,honest ,and communicating openly about the research process.