[Micky Hingorani]

Hi Anne, and fellow learners,

Many thanks for the week 1 discussion question and great to read the responses generated by this thought-provoking question.

In order to ensure that leadership and team members have a common understanding of stakeholder engagement and its value, there must be ‘a priori’ discussions and consensus. Such discussions early on, must focus on the different expectations among team members and leadership and clarifying what stakeholder engagement is, and what it is not; and then gradually emphasizing the benefits of stakeholder engagement. Highlighting the perils of not having stakeholder engagement can also augment such initial exercises.

A specific example I use, particularly to stress upon the value of community stakeholder engagement, is by explaining a bit from one of my conceptual work in bioethics. Debates in bioethics often underpin the value of informed consent in research, when it comes to “vulnerable populations”. I use this particular work in different formats, depending on the context where I am involving, to emphasize the value of community stakeholder engagement. [A poster version is attached where in the concluding section, I am proposing community participation as a solution to address one of the controversial debates in research bioethics]

With regards,
Nabeel.

[Micky Hingorani]

Question 1

– No Community Liaison Officer.
– No community involvement plan.
– Negative partnership with Department of health.
– Community unrest- Riots/ strikes in Mamelodi area at the Tshwane municipality.

Question 2

– Study Target realisation were met.
– Positive community response, regarding invitation to come on site for healthchecks/ for screening.

Question 3

– Collate all challenges experienced during recruitment annually.
– Suggestion box comments were looked upon.
– Individual recruiter assessment/ feedback.
– Employment of Community Liaison Officer

REALISTIC IMPROVEMENTS
– Relationship with sectoral clinics.
– Improve our Community Involvement Plan.
– Continuity use of suggestion box.

Question 4

– Health education to the community about the importance of Clinical Trial.
– Conduct research literacy education.
– Knowledge to the community about the sites that implement Clinical Trials.
– Strategic Outreach Planning.
– Do street outreach to underprivileged communities for example Informal settlement.

[Micky Hingorani]

For each team member to have a common understanding of stakeholder engagement and its value, I would ensure we hold various training activities on GPP guidelines and community engagement. The training would involve power point presentations on the various guidelines. The team will also have an opportunity to discuss the various challenges faced and come up with solutions to the same. By doing this you create a team embodied on togetherness and open up communication lines.
On leadership I would hold meetings with area leaders i.e the chief, village elder etc and government officials to come up with a community acceptable way of stakeholder engagement. The local leadership understands the community, its belief system and approaches better thus will give a clear guide on how to integrate the local population.

[Micky Hingorani]

The participation of two sites, in the city of São Paulo, Brazil, in the HPN083, demanded that there was a CAB. So it was created the CAB that I participate.
This experience is new to the community and to researchers. In this training and strengthening moment all the exchange of experience and knowledge is essential. The exchange takes place in the monthly meetings (between leadership and team members) and through the provision of articles, texts and previous research results.

[Micky Hingorani]

Philister
There is need to educate the community on the role of the CAB and stakeholder engagement and how their representation in HPTN083 would benefit them, in that they would understand what is the purpose of the study, the target population, why the trial is being conducted, risks and benefits involved and the community are given an opportunity to raise their concerns about the trial and advise how best it can be conducted in terms of time, identifying potential participants and other underlying issues that may come up.

[Micky Hingorani]

An effective team leader knows when to lead and when to follow. Communication skills of listening and attending prove very effective in a setting that requires intervention from every team player. Whenever team players are given a neutral, impartial opportunity to work, it can be amazing what talents and creativity are unleashed. The value of stakeholder engagement cannot be overemphasized. Stakeholder engagement from donor perspective to that of the implementer to thus, the final beneficiary, all have merit for the success of a strategy.

One such example has been with the development of a workplace policy for persons living with or affected by HIV and AIDS. The donors were willing to fund the consultation once there was a wide cross section of stakeholder involvement. So what did that mean for the policy development consultation. Policy makers, government ministries, insurance companies, NGOs, Sero positive persons, persons who were related to other sero positive persons, media, youth, male/female, women and religious were among the groups involved in the development of a policy to guide decisions that would affect the quality of life of persons living with or affected by HIV and AIDS, ensuring that every individual, once qualified, has a fair chance of the job. In the end, the enforcement of such a policy, with such widespread consultation, would prove so much easier.

[Micky Hingorani]

Stakeholder engagement is becoming more important to achieving desired outcomes lately. This builds trust relationships, which are essential to ensure that future decision-making processes are streamlined. It is important and paramount to have regular meetings with the leaders and all team members; where the purpose of engaging the stakeholders is clearly dissected. It is also important to engage both the leadership and all team members in the planning process so that everyone is carried along with the same scope of understanding. Effective information system is also a key to ensure leaders and team members have a common understanding & knowledge of stakeholder engagement. However, good stakeholder engagement is a testimony to my influence in my organization, and a key component to a healthy project environment.

[Micky Hingorani]

I believe, first of all, it is important to emphasize the importance of stakeholder engagement when developing the protocol of a clinical trial or research. Common goals and specific objectives of stakeholder engagement activities should be discussed by researchers, trial sponsors, community members and other potential stakeholders, and be incorporated into part of the protocol. For instance, I used to work for a youth-led organization which collaborates with other NGOs to promote HIV prevention among young people. When designing for our action plans for each site, we had a specific section that illustrating how we would engage various stakeholders. Before implementing our project, trainings and workshops would be provided for all team members to familiarize them with the project and ensure they have adequate knowledge and skills to implement the project, which included a section focusing on the importance of stakeholder engagement, our specific goals and objectives of engagement activities in the project.
During implementation of the projects, regular meetings should be held among team members in order to ensure research team has an updated understanding of its project, this is of great importance especially for those multi-site projects. Progress and problems in stakeholder engagement activities should be discussed in these meetings, and encourage members to share their own expertise in engaging different stakeholders. A reporting and sharing mechanism should be built both within team and among CAB to help improve communication and trust among each other. A well-established monitoring and evaluation system is also a key to ensure team leaders as well as team members and external stakeholders has a common understanding of stakeholder engagement.

[Micky Hingorani]

Dear Yumeng,

Thank you for highlighting the importance of stakeholder engagement early on, and in fact much much ahead of the actual clinical trial or research. This would certainly provide ample time and scope for the leadership and team members to develop a common and shared understanding of stakeholder engagement and its value. Thanks also for sharing your experience with the youth-led NGO.

Best wishes,
Nabeel

[Micky Hingorani]

It is important to keep lines of communication open by various means. Regular team meetings are helpful in communicating guidelines and expectations which can be reinforced via regular conversation and email communications. At DAIDS, we are currently planning the 2016 Strategies for an HIV Cure meeting. During our planning meetings, we brainstorm ways to include the community and implement the strategies we agree upon during these meetings. The information is then regularly communicated with former and current CAB members to include them in the planning process (agenda, providing meeting space, including community in the process for abstract submission, and ensuring that each collaboratory highlights their community engagement plan during their presentation,etc). This approach allows us to build on the partnership already present and strengthen it going forward as well as keeps us accountable to include the community in the meeting and research going forward.

[Micky Hingorani]

I believe that continuous training and discussions about experiences from community events is a good method to ensure that the research team achieve the same objectives. In our research center we hold staff meeting before engaging stakeholders and another meeting after stakeholder engagement to give feedback and share individual experiences. This is basically how we analyse the views and contribution of the stakeholder engagement from research team members.

[Micky Hingorani]

It is important to have regular meetings with the leaders and all team members where the purpose of engaging the stakeholders is clearly laid out. It is also important to engage both the leadership and all team members in the planning process so that everyone is on the same page. Furthermore literature can be shared internally which explain the importance of stakeholder engagement. Summarising the key tenets of stakeholder engagement on a one pager can be done and shared among the team leaders and the leadership. The information can also be shared through conducting an internal workshop and ensure that all the parties concerned participate in the workshop. Designing a pamphlet or palm card that is distributed amongst the project staff can also simplify the issue of stakeholder engagement and ensure that everyone understands its value.

[Micky Hingorani]

Thanks for the great input. Leadership and staff capacity development remains integral. I’ve experience with CAB. Creating an enabling environment where researchers,staff and community share expertise will go a long way in GPP.Allowing these stakeholders to be together on activities such as specimen destruction and conducting periodic stakeholder engagement meetings will also go a long way in building trust and buy in from all important players.

[Micky Hingorani]

* Continuous feedback to site staff meeting.
* Brainstorming on new strategies to make engagement a success
* Weekly report.
* Presentations during CAB meetings.

[Micky Hingorani]

Hi everyone,
I work for Zambart a non-governmental organization in Zambia. Like Koliswa I am currently working on the HPTN 071 (PopART) study. HPTN 071 is a large HIV prevention study, including more than one million community members. It is a three-arm, community randomized study in 21 study communities throughout Zambia (12) and in the Western Cape, South Africa (9) and is being implemented by Zambart and Desmond Tutu TB Centre (DTTC) respectively. The study is evaluating the effectiveness of two intervention packages on HIV incidence over a three year period.

Ensuring that leadership and team members have a common understanding of stakeholder engagement is an important undertaking. This is so because the knowledge about stakeholder engagement among them may vary.

The process can involve eliciting buy- in from study leadership. This can be preceded by exploring understanding around stakeholder engagement within the teams. Sessions can then be held to explain what stakeholder engagement means specifically and what it means to the organization. In the case of our teams this was done through protocol training for members of staff. The above was augmented by emphasis on stakeholder engagement from protocol development through to implementation. Stakeholders were involved during protocol development. They also participated in the randomization event. Stakeholder engagement has continued through establishment of different stakeholder mechanisms at different levels.