Lesson 5 Discussion Question

Social media has served as an effective way to recruitment study participants. Once enrolled into the study participants have the option of “liking” and “sharing” the facebook page associated with HPTN 073. Also other non traditional methods of recruitment and social media are phone/tablet applications such as Grindr and Jackd. Thus far I am not aware of any negative feedback via social media about HPTN 073.

1) How has social media and online communication affected your trial communication planning and engagement strategies with stakeholders?

2) Have you ever experienced unexpected issues at your trial site or in your research context? How were they handled? What lessons were learned?

Social media and online communication have not affected our communication with stakeholders. however social media is used a lot in our community.

The was rumor at one stage in a certain part of the community were somebody said we are giving people HIV. the information was brought to our attention by a CAG member and CAG members together with the community engagement team organised a meeting with community for an information session. the meeting went very well. we learned that community education is a shared responsibility between site and the CAG.

Hi prudence .. is it because social media was not informed? or informed ?and made aware

Social media has not had any negative impact on the study. This is because we have not use it. But we still monitor it to be on top of any issue that might raise.

But it has helped in a way because during the stakeholders meeting when we give updates on progress made in the study, some of the participants comment that they read on the internet of watch the news that the vaccine has shown potential for a 100% protection. This gives our study credibility.

At our site, we have never had media reports about the trials we are doing.  We have a communication channel to the media with people who are trained to answer any questions about the trials and site.  We have had in the past some community rumours of selling blood, infecting participants with HIV.  But this was at the beginning, now we are known especially that CAB and participants are our advocate.  Although some community members still know our organisation as working with HIV positive people on ARVs because it started on such programmes and still continues with prevention and care of HIV/TB.

Social media has never had any impact on our site due to the nature of the targeted research participants. Majority of them are illiterate and/or with low access to the smart phones. We do not engage with  the general media in our research process though we  invite them during our major events such us World AID’S Day activities.

One time we had a sensational media  report coverage in our site concerning a couple who learned that their daughters had come to our site to sell blood. They came and created a scene which attracted the media and the general crowd. They went to the police station to report that their daughters had been bled to death and they were under age..

The police accompanied them to the site and discovered that the two daughters were alive and healthy  aged 20, 22 years of age with children

In response to this, we called for an urgent CAB meeting where we addressed the matter and gave them a clear picture of the whole situation. The  CAB then planned for a meeting with the local community leaders and the National local media house representatives.

The correct information was given and time was given to ask questions and address their concerns.

This course will empower us on skills of Communication plan,to train CAB members and the research staffs on site’s communication and issues management plans. I feel great.

We missed this discussion questions in the forum last week and are now contributing belatedly.

Social media has had no impact on trials in our site so far, basically because of the literacy level of our participants and that the majority of  them do not own smart phones.

We have on one occasion experienced sensational adverse coverage by the media. A couple was informed that their two daughters were in our site to “sell blood”.   They live 12km away from the site they quickly came and created a scene at our gate attracting a huge crowd including the press. They proceeded to the local police station and reported that their under age daughters were bled to death in our site.

The police accompanied them and established that the daughters had come to inquire whether  the could participate in one of our trials, that they were aged 20 and 22years  were well and had not even consented to participate and that they both had children. The following day press ran sensational report POLICE STORM A US MILITARY RESEARCH FACILITY  subsequent to this we called an urgent CAB meeting where we gave them the true and clear picture of the situation. They then convened a meeting with all local community leaders, and all national and local media houses represented. The correct information  was given and time was given to answer questions.

As a result of this training we have now learned that there is need to give communication training to the CAB and  site staff so that together we can all develop the site’s Communication plan.

We do not engage with media as general practice though we work with them to in Planing the World AIDS Vaccines awareness Day and World AIDS Day, where we use the international Athletic star who come from the region to participate  in competitive races to mobilize the community. We also use the WAVD as our site open day when the public including the media can tour our facilities

Denver- Do you mean it takes time to map out local communities may be impacted by social media?

For everyone- What about media in general?

At my site we have never experienced issues with the media, but we have had good coverage from them when we have had our community events.

1) How has social media and online communication affected your trial communication planning and engagement strategies with stakeholders?

depends on the area.it takes time mapping out what can go wrong and interpreting what the local community might say. engaging with stakeholders on issue management and communication plans.some rural areas might not be affected.

2) Have you ever experienced unexpected issues at your trial site or in your research context? How were they handled? What lessons were learned?

working with CABS help for unforeseen circumstances but for unexpected issues consult with the cabs for solutions or way forward.

Social media and online communication are key elements in some US trials, beginning with recruitment through trial completion.  The benefit is to be able to discuss information clearly and thoroughly in a way to minimize misinterpretation.  On the other side, responses may need to be almost immediate, which an cause a challenge.

So far in our  sites ocial media have not affected community engagement strategies or activites due to its minimal use in the area,  not many people own smart phone or have access to internet.

In our site we experienced a romuur related to blood draw from participants, it was said the blood was for sell to the USA by the research site, and the issue was that the site was compasating particpants with small amount of money while they are getting lots of mone from the whites.

we had to call a meeting with study participants, discussed with them, explained that the blood drawn was for research purposes and  there is not possible to sell of the blood of less than 10 mls from different people, you can not even donate to someone. Then there was a meeting with the community leaders together with CAB members to explain the matter.  There after we conducted 3 radio talk shows where the study physician  were explaining and responding to questions. so most of people understood and especially when the study participants were okay, the rumor was cleared.

1) Social media has not affected the conduct of the trial at my site. We are considering using it in future to see how people will respond to it.

2) During results dissemination the participants thought that the number of participants that tested positive for HIV during the trial was the percentage of participants who got infected at the site. E.g. 66 women became HIV positive during the trial and they thought 66% of the women at our site got infected with HIV. When we became aware of this, an emergency meeting was held and the misunderstanding was clarified with the participants. Also, this was communicated with our local CAB and stakeholders. We also decided that every time a participant comes in to get the results, we will clarify this misunderstanding so that they were able to communicate it with their peers on the study.

Due to lack of access and minimal coverage, social media didn’t have any effect on  trial communication planning and engagement strategies with stakeholders? Our communication is done through community sensitization,stakeholder debriefing and using IEC materials and many others.

As a site we have not experienced any unexpected issues so far.

social media has never had effect on the trails at our site due to the coverage and access to platforms by the general community.

We have been fortunate not to experience any unexpected issues at the site but have in place an issues management plan for some anticipated issues that may occur in different protocols

We did not make use of the social media strategies in our current study because we were focusing on one on one interaction. The sensitive of the study  required that were use the one on one strategy.

• This reply was modified 9 years ago by Terfa Simon.

In the Ugandan context, social media has minimal effects on the trial because of its low coverage and values attached to it by the population.

At our site we have had rumors about the IPM 027 IP causing cancer. We have invited participants to share their feelings about the subject, generate solutions as well as give them the right information.

<span style=”line-height: 1.5em;”> The CAB is consulted for information and recommendations applicable to affected communities. </span>

Community  sensitization is done following the approved brochures from; Ministry of Health about cancer facts and other approved messages.

This issue has however been anticipated following the earlier stakeholder meetings. It results into non adherence by trial participants but with the rightful information and reference to the Participant Information Sheet (PIS) or consent and protocol the issue is resolved. It is important to exhibit transparency among the study participants by always referring to the PIS and protocol, it has been beneficial in managing these issues as they lay out the action plans in case any anticipated issues emerged.

• This reply was modified 9 years, 3 months ago by Josephine.