[Marie Michele]

Dear all,

I have a question. We are sharing interesting  experiences, but we do not have really time or room of details, I was wondering how we could also share some tools we might have, like documentaries, pictures or video;   it would be more interesting when we say how we engage our stakeholders, then you also show it by tools mentioned above.

I would like to share with you all some documentary that really shows how stakeholders are engaged. And I am sure my fellow colleagues might have the same things, it would be great if we have the opportunity of sharing those kind of tools.

Anne, do you have an idea on how we would share those kind of tools? Thank you

[Marie Michele]

Hi all
1. Discuss the link between formative research and community engagement for a trial. How are they alike? What are some differences between the two?

According to the GPP guidline, Formative research activities enable research teams to obtain an informed understanding of local populations, socio-cultural norms and practice local perceptions, chanel of communication and decision making. So, that is where slitely differ from the community engagement. The formative research would be involved before the study to enable research team to get an efficient community engagement; it would be done formally or informally. The best way to do the clinical research you have to know well your community in general. Your community includes, potential participants, potential stakeholders including those who make decisions etc. To achieve this, formative research activities should be conducted. The link or similarity is that, both have to work in collaboration  as they work for the community/society, they know each other well, so that why research team has to seek their experiences before to start the study for a better guidance and a better start.

I would say yes, my site has conducted formative research activities. Even though it seems that research center work closely with the community engagement from the begnning to the end of study, formative research maybe needed as our sociaty is not static it is dynamic, some changes might seek for formative research at any time before, during, and after study, it is depend on the situation.

2.  Has your site conducted formative research activities? How have you involved community stakeholders in formative research activities at your trial site? If not, how could you potentially involve them?

Before we start the study, we first ( I do not know if we could call it formative or informative formative research) but we first selected 15 institutions/organizations, in collaboration with Ministry of Health which is our line Ministry,  because we are doing clinical research. From those 15 we selected 6 considering what we needed from them. So to engage them, we provided them knowledge and skills on HIV prevention trough trainings, meeting every month, share documents that would help them to understand clinical research. We also engaged our different stakeholders from grassroots administration to the higher level, to help and facilitate research team to also grow in research smoothly, like I mentioned from beginning, Rwanda still needs to be more familiar with clinical research, the good news is that they are willing to support and also to learn, that why they are supportive and welcome any additional knowledge about HIV prevention.

[Marie Michele]

1) GPP goals is a big picture as Patchara said.  It is about establishing an effective stakeholders engagement program, and build a long term sustained relationships.  The GPP Objective is  needed to achieve the GPP goals.  Activities is how and what would be done to achieve the objectives, by who and when it should be done?

2) Engaging stakeholders through out of the study; it is success of the study itself, it makes work easier, and more trust of the results from the study.  Because engaging stakeholders through out of study, researcher get beneficial advise for the study and information needed to conduct smoothly the study. Rumors are addressed on time, recruitment and retention of participants done without difficulties and adherence is good. etc all that, it would not happen without engaging stakeholders. Stakeholders are our guidance, that why we own them a good capacity building in HIV prevention studies.

[Marie Michele]

Dear Colleagues,

Totally agree with you Ann, collective strategic plan for stakeholders is the key for a better plan. Stakeholders themselves would be involved in that strategic plan as they are the ones who know what would be done to allow them to accomplish their responsibilities as stakeholders. Some time researchers may decide to set up goals, objectives and activities for stakeholders, but they might get problems because they do not know the community well as stakeholders do. Of course the collective strategic plan for stakeholders will take us from short term thinking to a much longer, because, this means that we have a good and strong start, which allow us to know were we are going, which challenges we might face, and plan before hand solutions, and most of challenges are already avoided during the collective strategic plan. Actually I am supporting that idea because that what has been saving our site.

[Marie Michele]

Dear Jauhara, I just remember that I have responded you through my email(which had bounced) for clarification about what I had said about our community which is naïve about research, I was focusing especially on the period when we started doing research in our country that had only one research which was doing a small study on HIV vaccine, which was new as well.

Yes, it was not easy for every one including myself to be honest. That why we had to seat down to think, and plan. That why we decided to collaborate  closely with every one, who would give us assistance, like Global Compaign for microbicice for technical issue,  and IPM(International Partnership for Microbicide) who did a good job to help us  in building our community stakeholders from all levels, and they was also our sponsors for microbicide studies done in Rwanda.

But yes, even though a lot of effort had made to facilitate research to be done efficiently,  we still have to do a lot in term of education and training  community. Our research team now know the importance of community stakeholders of course after experiences faced and they are supportive. Another thing I would add on, is that communication and trust is a key in good collaboration between research team and community stakeholders. That why I consider our self as ambassadors. Let fight to be qualified as a good ambassadors then. let follow GPP.

Sorry, this information are kind of repetition, but I wanted to Clarify that to Jauhara that our Research team is fine with stakeholders.

All the best to you all.

 

 

[Marie Michele]

Dear Colleagues, sorry I missed your very important discussions, I was sick and was not able to consult emails; but really this course is very interesting, what is being shared here is the reality of things we face. I remember during  Caprisa results, even though we were not doing study on Caprisa, we were doing phase I and II on microbicide study. The population had the news on international radios, and all over sudern in the morning we were getting calls of people saying that those kind of research we are doing on people is dangerous, some participants and their families were not happy, already in the afternoon same days rumors were extending, national media started calling as well. It was not easy to every one, that was also our first experience to deal with such issue. Now the importance of stakeholders has been realized that time. we called our Mobilizers in the communities, our CAG members, people from Ministry of Health, Local authorities, some former participants ( we were lucky we had a nurse and some educated participants) they all joined us to respond to the questions of population,  we had different sessions on public and private media to explain to the population. It was hard moment, but with commitment of stakeholders who are know in different communities, the rumors greatly decreased very quickly. But to be honest, without those stakeholders help, research was in problems in term of recruitment and retention of participants. for me, I value stakeholders a lot, and I must confuse myself, I am not helping them efficiently in terms of giving them knowledge about research. except our mobilizers and our CAG, they use to have training every 2 years on GCP and ethics , communication and updates on clinical research in general and microbicide, the rest of our stakeholders we only give them a presentation on a new protocol when we have a new studies. But I agree with my colleagues, involving all stakeholders is a key of  research success. And our task became easier. The good thing of this module is that, sometimes you think that you did your best to engage your stakeholders, but reading this module, it shows you what you should do for a better results. Our stakeholders, our selves, need more knowledge and skills, which GPP course is being helpful, is helping in self evaluation.

[Marie Michele]

Dear all,

For us in our site, we identified our stakeholders as follow: we first thought on criteria that we had to base on, considering that the communities were research naïve, we need a strong team, that we had to train about  clinical research, hoping that they are the ones who should help us in advocacy. Then we visited 15 institutions/organizations, we had a meeting with them, then after visiting all 15 and discuss with them about they activities, we selected different 8 Institution/Organizations basing on the criteria we had. Each institution gave us 2 people who work closely with the community from the different level.  they were our CAG. Then, we invited Global Campaign for microbicides to train them on GCP  and Ethics. we also had a monthly meetings, in which we shared about what we are doing and they also inform us about any thing that they thing would be crucial for research to know. We had also engaged stakeholders from our line Ministry, which is Minister of Health. Their meetings with us where every 3 month. this group were very helpful for information needed to go to higher level, or if we need to any official documents.

[Marie Michele]

Dear all,

I hope you all had a nice weekend. I agree with you all about M&E tools, it is an important tool that would help all of us because it is after evaluation that we would know, not only effort of stakeholders, but also our own efforts done . without a good collaboration and communication with our stake holders, I do not think that they would be able to achieve a lot. So this tool will be very crucial to show all of us our strengths or weakness, once we are able to know that, the positive change would be done easily. This tool is kind of motivation for us to make systematically evaluation, once we know that tool of M&E exist, for sure we will do a valuation and share it with our stakeholders where it is possible.

[Marie Michele]

1)During research process, we also need to prepare to  recruit potential participants in the research, who would meet inclusion criteria of the study with less cost and less time that would be spend to get eligible participants. once stakeholders are well identified, recruitment and retention of participants would be easier. To achieve this, we need to involve stake holders and it is important to identify the best  stakeholders who is respected in the community, who will facilitate the researchers to get all regulatory approvals process etc. Stake holders are the people that community listen to, so they would help researchers to explain the research mission, objectives and strategies.

2) For the research team to understand the value of stakeholders, I would take an example of my own country, which is basically,  many communities are still research naïve, we do not have many clinical research around, we are only 2 sites doing clinical research, it is understandable that, even some of our colleagues would not really understand the value of stakeholders, until they had been experiencing the issues such, rumors in the community, getting regulatory papers without any problem, helping in dealing with media if necessary, getting eligible participants without a lot of difficulties, etc. through  the stakeholders collaboration and commitment of helping researchers to reach their objectives, the research team really acknowledge the value them.

 

[Marie Michele]

Dear Colleagues,

The success of our work is based on knowledge, skills and commitment, one might have all those, but still sharing experiences would be a great addition that would help each one of us. I just finish to complete my baseline evaluation, theoretically,  you may have an idea or knowledge of those questions asked in the baseline evaluation. What about in the real life in the field? thinking of that, I said, let me share with you my feelings I have now after completing the baseline evaluation, so that we all be ready to share our achievements in the field as well as challenges, so by the time this training will end, we will have a good package of skills learned from each other.

I wish you all a good weekend.

Marie Michele

 

[Marie Michele]

Hello to all,

I have been working over 10 years of field experience in health research, mainly focusing on Health and HIV prevention. I provided technical assistance on social studies to different institutions/ organizations (public and private) regarding HIV/AIDS, Reproductive Health, and Family Planning at National level. I am an experienced social scientist and researcher with a passion in working on HIV/AIDS prevention; Reproductive Health and community outreach programs. I practiced my skills and enhanced my experience in different capacities in various research programs and institutions working as a PMTCT( Stopping Infection from Mother to Child) study coordinator from 2001 to 2004 through SIMBA Project. From 2004-2012, I also served as a Communication and Community Outreach Manager for Projet Ubuzima’s Microbicides Research Program financed by the International Partnership for Microbicide (IPM), a position I currently occupy in Rinda Ubuzima which is now doing a clinical trial on Ring Plus, is a study on safety and acceptability of vaginal rings that protect women from unintended pregnancy. I am also working as a regional representative in Health e Foundation based in Amsterdam.

I have been an active advocate at the National and International level for Microbicides Research as a member of former Global Campaign for Microbicide (now AVAC)

[Author]

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