[Micky Hingorani]

We can’t move forward to any trial stage without community participatory since of the beginning. In my experience, having regular CAB meetings, ensuring that community concerns and needs are consistently understood and considered. Listening to the community worries, seeking to understand how they want to be engaged, based on their particular circumstances are very important to the course of the research at any stage. Providing feedback on how community input influenced the outcome is essential to their involvement to the research.

[Micky Hingorani]

Currently we are busy with therapeutic studies. Our focus is on Cardiovascular studies e.g Vertis B17 study, Osteoarthritis- Regeneron, and Hyperlipidaemia (Cholesterol). In developing our overall goal, Stake holders such as Clinics and older peoples gym clubs(generic rehabilitation gyms) these are gym clubs created for older people to keep them busy, healthy and fit, CAB, general community members through meetings.
Currently we are working on using print and electronic media to reach out to areas unfamiliar with, for greater participation.

[Micky Hingorani]

Allowing for community representatives to be involved in the planning or even protocol development community participation is crucial. Collaboration with Community Advisory Boards will also assist in ensuring community input. Stakeholder meetings are important as they allow for insights from the key community stakeholders earlier during protocol development phase or prior to implementation of a trial.

[Micky Hingorani]

Zambia Emory HIV Research Project(ZEHRP) was established in Lusaka, Zambia in 1994 and Ndola, Zambia in 2004. Zambia is a part of Rwanda Zambia HIV Research Group (RZHRG) whose headquarters is based at Emory University, Atlanta, USA, also has a field site at Project San Francisco (PSF) in Kigali, Rwanda. RZHRG not only does programmatic activities ( service provision) but also is actively engaged in epidemiology and clinical research. RZHRG has over 20 years of experience in couples Voluntary Counselling and Testing (CVCT) and was awarded center of excellence status in 2008 by CDC to provide technical assistance and training in the countries that are interested in CVCT scale up. To date has worked with approximately 20 countries that are interested in CVCT

The organisation has also conducted several clinical trials for drug and vaccines to prevent HIV transmission. In a drug trail, ZEHRP participated in a phase lll trail to evaluate the impact of suppression of HSV-2 in HIV positive individual on HIV transmission. In vaccine trail, ZEHRP participated in two clinical trails phase l/ll sponsored by IAVI. A002 from 2006 to 2007 and BOO2 which was a phase l multi- center randomized clinical trail. ZEHRP also participated in long term follow up of former vaccine participants to assess health status and duration of immune responses of HIV vaccines used in the past trials. ZEHRP is also conducting a Simulated Efficacy Trial (SiVET) not only to ensure site readiness for future clinical research but also to determine the feasibility of including single women (i.e., sex workers and single mothers) in efficacy trials, as these are new key population for the organisation.

All of ZEHRP’s past and ongoing programs and research depend on community participation. In this regard, it has a Community Advisory Board (CAB) whose role is to advise the research site as regards the community’s perspective on research activities. In the past we have engaged district clinic promoters (DCPs), influential net work leaders (INLs) , and influential net work agents (INAs) who are supervised by the Liaison community officer to promote messages regarding the project in the community. In this way the communities have come to learn about ZEHRP and its research and programs. The community input and support have also been achieved through local Radio station to keep the stakeholders informed about the project and facilitate open discussion between the researchers and the community. Face to face and scheduled meetings with Local NGOs to give general information, face to face and scheduled meetings on general information leaflets, flyer and posters. The team has also ensure community input and support through Local and regional symposiums as well as during National events.

Best
Hilda.

[Micky Hingorani]

Our team ensures community input and support for the overall goal of the engagement program as well as common purpose and shared values, early in the planning stage by engaging the community from the beginning. We meet the community leaders from the word go. This leaders could be religious, politicians,business, media, civic leaders etc. These are leaders recognized in the community. The overall goal is to ensure community buy in from the beginning. Community involvement helps the community to own whatever project or program that will start in the community. The community will support and contribute to the program. Because of the input from the community, it makes them feel to be part and parcel of the program.

If community engagement is not done in the early stage, you could face resistance and the program is bound to fail. The CAB act as a go between the program and stakeholders. It has helped in improving communication and trust among stakeholders as the come and are known in the community. They act as mouth piece for both the community and the program, especially to get feedback both ways.

Due to the reasons I have given above, it is very important for community input and support in the early planning stage.

[Micky Hingorani]

I am a program manager couple HIV counselling and testing at Zambia Emory HIV Research Project, I have worked for this organization for 16 years. To ensure that leadership and our team members have a common understand of stakeholder engagement and its value we have meetings with the leaders and team members were we discuss and explain the roles of each one of them. It is important for team members to understand stakeholder engagement if the clinical trial has to succeed. Meetings also help in getting feed back and share ideas from stakeholders and team members as well.

Besides meeting we also conduct training to team members so that they are familiar and knowledgeable on the clinical trial being implemented. The Community Advisory Board (CAB) is formed to ensure leadership and team members complement each other.

[Micky Hingorani]

Hello,
I am a medical manager, research study nurse clinician, counselor, and Good Clinical Practice (GCP) trainer and was a CAB Liaison Officer for 5 years at Zambia Emory HIV Research Project. Clinical Trial studies started in April 2006 at ZEHRP, and that meant that there was a great need for community awareness and participation for the success of the program.A Community Advisory Board (CAB) was then formed.
Formation of the CAB was one way of ensuring that leadership and team members have a common understanding of stakeholder engagement and its value, and this also is part of the responses of Quality Improvement in HIV prevention research.
Best Regards,

[Micky Hingorani]

Ensuring a common understanding of stakeholder engagement and its value throughout the trial is critical for the success of the research project. Stakeholder mapping at the initial stage enables all stakeholders to be aware of each other as well as the different contributions they bring as well as expectations.

Establishing relevant committes Reference/working Groups is one of the strategies I have used. Previously I have been involved in the formation of Reference Groups. This primarily involved representatives from different relevant institutions. I have also been involved in the formation of Community Advisiry Boards. Such groups need to be trained on a the specific trial and the processes involved. Effective feedback mechanisms need to be put in place to ensure continuous and regular feedback.

My involvement has also been with organising and conducting general community meetings as well as meetings with different organisations and departments within organisations.

[Micky Hingorani]

Thanks for you thoughts. I would like to know more about the Reference Groups you mentioned. How do you access this group. Are they a long term partnership group. i guess its a very rich experience.

[Micky Hingorani]

Hi,
I am a research nurse /counselor, CAB Liaison officer and a primary dispenser in a SiVET trail at Zambia Emory HIV Research Project. In order to ensure common understanding of stakeholder engagement, before conducting any study, training’s have been provided for all team members to familiarize with the project and to ensure that they have adequate knowledge and skills for implementing the study. The focus is on the importance of stakeholder engagement, our specific goals and objectives of engagement activities in the project.

A reporting and mechanism has been put in place among CAB to help improve communication and trust among stakeholders. We have revised the CAB membership with the aim of introducing new members on a regular basis in this way enhance the CAB’s advisory role. Our research site is currently conducting a SiVET trail in which the CAB was trained and given the capacity to effectively engage with us on behalf of their communities. By so doing, they will ensure that we include local perspectives, interests concerns as we implement the study.

At our research site we hold staff meetings before engaging stakeholders and another meeting thereafter to give feedback and share individual views in order to analyse views of stakeholder engagement from research team members.

[Micky Hingorani]

Hi,
I am study coordinator and counselor in in a PrEP Demonstration Project, and also in HPTN083, USP – São Paulo. We have reactivated our CAB in São Paulo this year.
In order to ensure that leadership and my team members have a common understanding of stakeholder engagement we have been focusing in training and language.
We plan a training program for the team members, but also for the CAB and for the open community about stakeholder engagement and the role of the community in the clinical trials.
Language, communication skills and very important in reaching the community.
We plan to provide graphic materials for example, explaining the clinical trial in the CAB meetings, but also in meetings with stakeholders.

[Micky Hingorani]

Thank you Jessica for that explanation and a vivid example of a “BROADER” stakeholder (A Reporter).

[Micky Hingorani]

I am still learning about the necessity and importance of stakeholders engagement.My first impression is that it’s needed for a better result based on the lessons learned from previous studies .

[Micky Hingorani]

Thank you Nkiru, you captured it all.

[Micky Hingorani]

Dear Piero,

Greta to read through your post. I particularly appreciate two points you highlighted 1) to avoid jargon as much as possible and 2) to use appropriate movies. These points can certaily help in developing a common understanding on stakeholder engagement and its value.

With regards,
Nabeel