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It is very useful for me since I do not have any experience on how to write goal, objective and activity. I can apply it to my job on community engagement plan. I have new knowledge from comment on my work assignment.
GPP knowledge is same as I used to train. However I found some detail that I have not known from the last training. And it is so detail until I never catch or suspect in last time.
It is good opportunity for me to learn on GPP again.
I never involved in PrEP trial. I involved only vaccine trial (RV144) but worked only monitoring. However I think it is importance to inform and ask their opinion about dissemination and access trial product.
Dissemination process is important for all kind of trial. It can be affected for community such as their image and benefit. Researcher should concern about this.1. Engagement efforts can help researcher develop Information Education material in lay language, smooth recruitment, researcher understand well on norms&culture& their life style etc. It helps participant easy to understand information, trust, believe process of study and researcher etc. Our study, we worked together to modify consent form, brochure, questionnaire to be lay language. It makes participant does not worry about their understanding on material. They feel comfortable during enrollment, visiting on their appointment date. They feel good to have relationship with researcher.
2. CAPRISA succeed their engagement because they collaborate with stakeholder for all cycle of study. The good participatory came from stakeholders’ trust in research.
3. We collaborate with stakeholder to sustain relationship. We attend bimonthly meeting, create activities to campaign HIV prevention together among organization who work with HIV/AIDS. We educate knowledge on clinical trial, ethics and study information regularly to participants, target population, GOs and NGOs in study area and CAB. We often update study information to stakeholder. We perform focus group sometimes to develop our service in our study.Examples of trial related harms at my site may be pain at finger tip because participants have to come for blood draw at their tips twice a week. Some participants cannot work as usual because they are massage. Social stigma is less at our site. Some of participants were thought by their colleagues that they are HIV infected because they often come to our site.
The procedures to deal with trial-related harms were discussed with stakeholders prior the trial. So they can help us to mitigate misunderstand.
Researcher should concern more on ethical if they will conduct research in vulnerable group. In this case, researcher conducted the study in IDU and volunteers had to take methadone at the clinic. Stakeholders might think it was condition to make volunteers participated in the trial. Unfortunately for the researcher that the study conducted in Thailand,where the government does not support to provide clean needle to volunteer. Researcher team should perform activities to ask stakeholders’ opinion, make good understand and build trust prior conduct the study. National or global NGO are needed to consult and help researcher on issue that related with policy in country.
1) Give an example of successful stakeholder engagement in protocol and/or IC development. What changes were made as a result of the input gathered?
Answer: Our CAB never suggested on protocol. They just asked some information and made understanding. However researcher gathered their questions and edited some on protocol. Most of them concerned on ICF and media. They commented and suggested about language we used and illustrated. Researcher agreed with them and tried to adjust as their recommend. The issue that researcher cannot change are target population in the study. One thing we cannot edit is target population. They often suggested to do not mention” low risk population or high risk population” and “volunteer who positive or negative”. They said that it should be discriminate for the one who cannot enroll in the study.2) If a protocol gets sent to your trial site in final form, how would you address the GPP recommendation for stakeholder involvement in protocol development?
Answer: Even though the protocol was finalized, our investigator provides protocol to CAB for review. All of our sponsors concern about community engagement so we can make amendment on protocol after CAB reviewed and asked for some information. All of sponsor can accept the amendment. However CAB never suggested about risk from invasive procedure or intervention. I hope they can do in the future.Dear All,
Thank you very much for your replied. They are very useful for me.
In the past I have never added national stakeholders in my plan. I meant the plan in the area of our study,Pattaya.
I have never invited them to do activity in Pattaya just participated with them in Bangkok where headquarter is located only.
I think it is enough. However after I read your suggestions, I think I misunderstood a bit.
Fortunately, there will be a new trial at my site. I will add them in my plan and invite them to participate with us to get
information from the new study or other activities in Pattaya.
Thank you very much again.
Pat
1) How has social media and online communication affected your trial communication planning and engagement strategies with stakeholders?
We do not have affected from social media and online communication. We concern affected from our participants who post their participating in social media. They do not concern they may break their confidentiality by themself. We have to be careful and warn them because they hide to take a picture during conducting activity in clinic and post on facebook. We could protect them from breaking their confidentiality in the last. Our participants used to post research information to their gay romeo to help staff for recruitment as well. We asked them to take a look their messages before they posted. So we do not have affected from them.2) Have you ever experienced unexpected issues at your trial site or in your research context? How were they handled? What lessons were learned?
We have 2 issues since we have opened our clinic study. First is a participant was gossiped by their colleagues and boss that she is HIV infected. We got information from her so we contacted with NGOs who take response in that area. She asked medical certification to show to her boss. NGOs went to her bar and provided study information to her colleague without identified she is a participant. Everyone understand and the participant was satisfied.
The other issue is related with business. Someone used our name to discredit a massage parlor. He/she said that our participants who work in there has got HIV infection and warned customers to be careful to come to this massage parlor. Participants informed research staff. Study team informed to NGO who takes response in that area. We went together to explain study information to parlor owner until he understood. The other way, participants asked medical certificate to show to their boss. We explained their right to show or do not show blood result to them and let them made decision to clarify their blood result. A participant chose to do not show his result while the other two chose to show their blood result to their boss. All of them were satisfied the issue management.1) What is your experience with stakeholder mapping? How do you use stakeholder maps at your site? Discuss how you (and your colleagues) determine the importance of involving one stakeholder versus another. For example, how do you determine who constitutes your CAB?
I used map from NGO and GOs in study area. We created the map together. We divided area to survey and get information and then we combined information together to do a map.
We use the map mostly on recruitment and educate knowledge about trial and HIV prevention to target population(MSM/TG).We did not use the map for engage the institutions.
We used identify stakeholder matrix to determine how to involve stakeholders. Power and interest per organization were discussed among researcher team.2) Stakeholder engagement is a ongoing process, and sustaining multiple partnerships requires long-term investment. How can you work with stakeholders to actively build and sustain longer-term relationships? How can you create the same commitment and ‘buy-in’ with your research team?
We collaborate with NGOs and GOs in study area to sustain relationship. Activities on World AIDS Day, VCT Day and Valentine’s Day were collaborated by all NGOs and GOs who involve with HIV prevention and care. The city and organizations who work with HIV/AIDS will have a bi-monthly together. Researchers, NGOs and GOs in Pattaya educate to MSM/TG who work in bar, massage parlor and entertain venue about HIV prevention together. The activities above are our strategies to sustain long-term relationship. And also we can know new stakeholders by current stakeholders.1) Discuss the link between formative research and community engagement for a trial. How are they alike? What are some differences between the two?
For my idea, I think Community engagement is ongoing process of working collaboratively with community stakeholders. We have to work for all phase of trial. It can be inform, consult, collaboration, etc. Formative research activities is a process to finding the answers/understanding we need prior the project. However we have to apply 6 principles of GPP for both of them.
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?
I did not involve in formative research activities. I involved in my study in 2009 after the study have conducted for a few months. However I knew from my colleagues that they had meeting with stakeholders to inform, consult and learn from them. They asked stakeholders about appropriate site study, language we used in Informed consent process, TOU, questionnaire, office time and compensation. The meeting was set up several times with different stakeholders. And also all of staff has to train sensitivity training to understand target population. We invited some of them to teach the staff. I attended the sensitivity training also.
The community engagement cannot stop. We are working on it right now because I think socio-cultural is dynamic. It can change anytime. If we will conduct new trial but in the same group, same place, we cannot avoid to have Formative Research Activities.
1) Distinguished between GPP goals, objectives, and activities.
Goal is draw big picture and spend long time to achieve the goal. Objective is sub purpose of goal and activity is how to achieve the objective. I think the problem of researcher aspect is goal. Most of goal is related about policy. We can not derive it unless stakeholders agree with it. The other thing is some researcher teams do not conduct for long time such as cohort study. So goal is not necessary for the study sometimes.2) Conducting stakeholder engagement throughout the entire trial process will make smooth conducting. Two examples of benefit are rumor mitigation and advisory mechanism. The rumor would be informed by stakeholders and methodology to solve problem will be done together. Access to hard to reach population would be received from stakeholders as well.
Examples of not meaningfully involving stakeholders are rumor and inappropriate of study site. The rumor makes bad recruitment rate. The recruitment rate and number of rumor are indicators of the problem. For study site, If we do not ask stakeholders’ opinion about study site, we would not have good place for the study for hard to reach population.1) In your own words, describe why stakeholders are an important part of the research process.
Most of researchers do not know well in the area of research such as life style, culture etc. of the community. Research conducting may not smooth well. Community stakeholders know more contexts about their community and they can help researchers to conduct their study for all cycle of study. The example of issues we can get from stakeholders are how to recruit the hard to reach population, what appropriate manner from researcher to do to trial participants, what trial participants really need from researcher, how to manage the rumor etc. Community stakeholders are able to help researcher for all cycle.
2) To what extent does the research team you work with have an understanding of the value of stakeholder engagement? Explain your answer.
Our institute concerns about value of stakeholder engagement very much. We emphasise the importance of stakeholders. We try to follow GPP guideline. We have engagement plan for each study we conduct. We follow topic areas in GPP as well even though we cannot do for all 16 topic areas. We have difference level of researcher to deal with difference level of stakeholders.
We emphasize a lot about value of community advisory mechanism. We consult CAB for all level of study. We have meeting with community every month to update information and consult them about problem we confront with. We join in community activity to maintain good relationship with stakeholders. We educate stakeholder every year.
Hello everyone,
I am Community Engagement Coordinator of the Department of Retrovirology, Armed Forces Research Institute of Medical Sciences in Thailand. I work for CAB of the institute. Our CAB has established for 3 years. We used some techniques from GPP to work for CAB.
I am a clinical and community engagement nurse in cohort study in Pattaya, Thailand also. In the part of clinic nurse, I am a counselor in clinic.
In the part of community engagement I am educator and recruiter sometimes. I work in community such as outreach, workshop in bar, and join in community activity such as World AIDS Day activity. I followed GPP guideline in my job. I established the CE plan for each year. I tried to use M&E techniques in the plan also. I identified stakeholder before making a plan. The plan and real activities are quite well. However I think I still have some problems about identify stakeholder and some activities in the plan such as advisory mechanism.
I hope I can get new ideas and new knowledge to develop my skill to work with stakeholders from the GPP training course. I am glad to have conversation, learn together, share ideas with my new friends in the course also.
Thank you very much.
Patchara
