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Thank you krub K. Yarinda.
K. Yarinda apologized for the late response due to log in problem. Using social media in research has positive and negative effects. For positive, social media increases access to targeted group. It is also convenient. As for negative effects, forwarding message among online community can cause miscommunication leading to serious controversy such as the debate on PrEP. In her work, K. Yarinda uses social media to recruit trial participants. There is no negative consequence so far.
Thank you krub K. Yarinda.
K. Yarinda apologized for the late participation due to log in problem. Her involvement in the study is to recruit trial participants who are transwomen. She does this by education potential trial participants on HIV/AIDS and information about PrEP as well as fundamental information of the study. She doesn’t engage with other stakeholders such as business owners or other institutes. Most of her work is personal interaction with potential trial participants.
Thank you krub K. Atthaphon.
K. Atthapon wrote about a social media used in Adam’s Love website of the PrEP Princess program. Adam’s Love included new criteria for participants which was potential participants would be from online register only. Any one who was interested in receiving information from online sources such as Facebook, Line @, website and hotline and had already registered online anonymously (participants could use acronym instead of real name) before requesting services from health centers operated by Adam’s Love partners. The process was called Online to Offline. Using social media enabled the research teams to access variety of populations. It was also convenient and quick and no cost. One ethical condition in using social media was answering certain questions (from participants) that should be referred to specialists.
Thank you krub K. Chintana.
K. Chintana wrote that social media could positively and negatively affect research.
Positive impacts of social media are:
1) It helps in creating coordinating network between research sites thru group Line application which is convenient and nurtures positive relationship between sites.
2) It facilitates effective communication and provides users with variety of communication channels. For example in register a study in the US government websites such as http://www.clinicaltrial.gov; or http://www.clinicaltrials.in.th; for dissemination of a study information thru the website of the Research Institute of Health Sciences, Chiang Mai University at http://www.rihes.cmu.ac.th; or to communicate with trial participants, their families, officers of community hospitals, research team, CAB, officers of the Provincial Office of Public Health, and Regional Office of Disease Control, and the Bureau of AIDS, Ministry of Public Health thru line or facebook.
3) It can be used in public relation of a study. The research team sends summary of a study to community hospitals using line and facebook. Moreover the research team uses social media in refer trial participants to the existing health services after the completion of the study in parallel with the formal communication.
4) It is economical and convenient way of communicationThe negative impact of social media is:
1) It might lead to revealing confidential information of trial participants which could cause social harm to them. K. Chintana involves in HIV studies among mothers, children and adolescents so she has to be very careful about using social media.Thank you krub K. Wilawan.
K. Wilawan wrote about an attempt to use Facebook to distribute information about an HIV vaccine study because the study wanted to target the general population. However the institutional IRB was concerned about the inability to control the content posted in Facebook. As the result, the study had to abort the idea.
There were many instances when trial participants and stakeholders asked the research team about information that they got from social media which included right and wrong information.
K. Wilawan thinks that social media is very interesting particularly the fact that presently it can reach a large number of people easily. However researchers have to be careful in presenting information and answering questions because many topics are complex and can lead to misunderstanding easily. If misunderstanding is circulated widely, correcting it will be very difficult.
Thank you krub K. Sophisuda.
K. Sophisuda uses social media informally because it is not formally included in the stakeholder engagement plan of the study. She uses it to provide general information of the study, to communicate with the site’s CAB, other stakeholders, local partners and related networks. She uses social network to set up meeting, update and share ideas and practices. In communicating topics related to the study, K. Sophisuda uses Line, Facebook Messenger, and Beetalk because these are personal communication and protection of confidential information is her main concern. She has to be certain that the information shared in social media is same as the information that has already disseminated in the study brochure or information about general health care. If trial participants want more information, they could set up an appointment to come to the drop in center for addition information. This is also to make sure that they understand correctly.
The advantage of social media is interested person will receive sufficient information including pictures, text, and geographic location (share location) of the site before coming to the site or enrolling in the study. The disadvantage is text-focused communication can lead to misunderstanding, and sending and resending inaccurate information to more people rapidly. If this happens, the study will be affected by false rumor which could lead to mistrust in the community.
Thank you krub K. Rattika.
K. Rattika wrote that because the world is moving toward online age, stakeholder engagement including contacting trial participants have shifted to social media. K. Rattika uses Line and Facebook’s messenger to contact stakeholders. She uses social media in recruitment, dissemination of trial’s information and update. Social media is more convenient that telephone call because people don’t have to respond in real time. When they don’t have time to talk, they can respond to Line message later. Furthermore they can read text, see pictures or receive attached files as well. Thus the response is better than telephone call.
For contacting trail participants about their clinical visits, trial participants prefer social media and the response is correspondingly better that telephone contact. However people who use social media should be careful because sending pictures or confidential messages to a wrong group or person could unintentionally reveal trial participants’ personal information.
Thank you krub K. Kath.
K. Kath has no direct experience in using social media in research or follow up. She thinks that the use of social media might effect the trial’s public communication or reveal the trial’s confidential information. K. Kath is interested in creating a social media for trial participants to exchange ideas.
Thank you K. chettha for sharing.
K. Chettha added to his colleague (K. Sophisuda) that his main responsibility is recruitment and enrollment and health education. In recruitment, K. Chetta pointed out that it is very important to work with key stakeholders who are business owners in the area. Working with business owners help him to accomplish the outreach objective.
I want to explain about my role as a recruiter in the Princess PrEP project as to accommodate the project’s volunteers who come to the site to get services. My work that related to stakeholder engagement as as follows:
1. Screening project volunteers by collaborating with various partners of the network. The network includes anonymous clinic, Adam Love clinic, Rainbow Sky Association, and Silom Community Clinic. Before the start of the project, there was a formal meeting of the partners. The meeting objective was to standardize the operation particularly about the enrollment criteria for MSM and TG in each target area that is contextually different from other areas.
2. Accommodating the project’s volunteers who come to the site to get services at anonymous clinic, AIDS Research Center, Thai Red Cross in the first 3 months. Key stakeholders can be categorized as:
2.1 Counsellors and research nurses. I have opportunity to work with a counselor and a research nurse. In our work, we regularly discuss about our work informally on various topics including services, making appointment with volunteers, and collecting data from volunteers and documenting it systematically and officially.
2.2 Project volunteers. When a volunteer wants to receive services from anonymous clinic, I will accommodate the volunteer throughout the entire process from starting with registration, coordinating with officer at registration and inform relevant counselor and research nurse to speed up the process. During the waiting, I will talk informally with the volunteer to learn about his current living situation, satisfaction of the services, suggestions to improve the services as well as enquiring about PrEP taking such as the time which can be used to develop individualized monitoring system for reminding each person to take drug on time.Summarized and translated by Udom
คุณอรรถพลแนะนำตัวว่าชื่อเล่นเรียกว่าแบงค์ และคุณอรรถพลขอโทษที่แนะนำตัวช้าเพราะสองอาทิตย์ที่ผ่านมามีงานยุ่งมาก ปัจจุบันคุณอรรถพลทำงานบริษัทท่องเที่ยวและเป็นอาสาสมัครให้แก่โครงการ HPTN083 ให้แก่ศูนย์วิจัยโรคเอดส์ สภากาชาดไทย (TRCARC) โดยที่คุณอรรถพลทำงานรับผิดชอบในโครงการ PrEP Princess (โครงการเพร็บพระองค์โสม)ในกลุ่ม MSM และ TG ประจำอยู่ที่คลีนิกนิรนาม สภาชาดไทย คุณอรรถพลเรียนจีพีพีเพราะว่าการเรียนนี้มีความสำคัญต่อการพัฒนาโครงการให้ดีสมบูรณ์แบบ อาหารโปรดของคุณอรรถพลคือแกงฮังเล(อาหารเหนือ) และคุณอรรถพลยินดีที่ได้พบกับทุกท่านครับ
Thank you krub K. Kath. Perhaps you can explain in English, for Anne, about the preferred term for transgender people.
If I have to translate it. You prefer the term “sexual crossover people” instead of “sexual converted people” because most people cross over with sexual status. I am not sure I can translate these correctly.
However can you give us an example of formative research activities that could help researchers and the team to gain better understanding of TG community? Thank you krub.
Over 10 years ago, the research team conducted focus group counseling for HIV positive children on drug adherence. The team wanted to find out the reasons for non-adherence. The findings from focus group were very useful and led to ways to improve drug adherence. One of the findings was, according to the children, there were too many pills. The research team hence came up with an idea of a combination pill that is small enough for children. It also solved the problem of dividing adult-size pill and the problem of taking too many pills. The project was approved by the sponsor and has been completed.
K. Sophisuda wrote that since she is new to the job, her answer is based on what she learns from her colleagues and office records. ECHO project is a study of acute HIV infections in MSMs and TGs in Pattaya. For formative research activities, the research team worked with stakeholders from the beginning. The work included consultations with stakeholders to get inputs and suggestions about the planned study as well as providing updated information to the stakeholders. This is repeated every year. ECHO team also informally and formally reviews stakeholders annually. All activities are documented accordingly.
ECHO center has a CAB, called Retro CAB, which consists of representatives of various societal sectors. The Retro CAB advises the research team on implementation of the study. The Retro CAB operates according to GPP, it has a chapter that is regularly reviewed. It meets every 2 months to review and comment on issues that the research team proposes. Furthermore, the bimonthly meeting is a regular opportunity to provide update information to the research team as well as receiving up-to-date information about HIV research from researchers. There is also an annual capacity building meeting for the Retro CAB.
In summary, formative research activities and stakeholder engagement activities do not occur only at the beginning for a study. Engagement activities are on-going during the implementation and the results are used to update and to further develop the study. These activities are considered vital and thus included in every annual plans of the community engagement (CE) team.
ผู้มีส่วนได้เสียของการวิจัยสามารถให้ข้อคิดเห็นและข้อเสนอแนะต่อทีมวิจัยเกี่ยวกับการเก็บข้อมูลพื้นฐานเพื่อสร้างรูปแบบการวิจัย เช่น การออกแบบคำถาม หรือยุทธศาสตร์ในการเข้าถึงกลุ่มเป้าหมายเพื่อเก็บข้อมูลพื้นฐานที่จะช่วยให้ทีมวิจัยสามารถออกแบบการวิจัยที่ดีสอดคล้องกับสภาพ/บริบทของของพื้นที่ได้ โดยเฉพาะอย่างยิ่งประชากรกลุ่มที่มีความเปราะบางหรือกลุ่มประชากรที่เข้าถึงยาก
กรุณายกตัวอย่างกิจกรรมที่ท่านได้ทำมาเพื่อช่วยให้ท่านได้ข้อมูลที่จะเป็นประโยชน์ต่อการออกแบบการวิจัย
