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Some sites have used social media and journalist (advertisements, posters, …) during recruitment phase to get the message out. I have not seen real broad implementation of social media and online communication to be used in further trial set up. Perhaps it is an idea to use it during communication of the primary analysis results (that will be known in Q3 2016) and as long term retention strategy. I will put this on the table.
In our trial a lot of the input has been given via face to face discussions. Investigators also sat together with the MD to really discuss potential issues that could arise at their specific sites and how they manage these normally. Where possible, presentations were adapted last minute (with successful outcome). I think this could be taken up more broadly in developing standard templates that then can be shared with all sites/subjects, this on paper and online. We should have a plan in place that deals with these issues proactively, ready at study start. Also really building up a strong GPP network will be helpfull as information and good practices will be shared earlier.
My direct concerns are:
- does sponsor has IT solutions available and will there be sufficient budget for it?
- do participating sites have sufficient IT available or does communication preferably is shared in paper or both (depending on the person it needs to reach).
- time constraints. this new field is developing so quickly within the organization that it is hard to meet trial/program deadlines leaving not a lot of time to really build structural solutions. i know the organization is committing to implement GPP and perhaps higher level implementation is already ongoing but still needs to be deployed…
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Mark’s post is really very insightful and highlights the potential benefits and pitfalls of social media. In China, where the government has very tight control over traditional media and the messages and stories that are reported on, there is a greater measure of openness on social media platforms like WeChat. However, as many have said, there is also a great opportunity for misinformation and rumours to be spread quickly and widely. In thinking through our trial’s communication strategy we will want to invest staff time in participating in relevant WeChat groups and monitoring discussions related to the trial. If misinformation arises there, it will be critical to have the appropriate “key messages” and have a person identified to respond to issues in online forums.
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Social media (What’s up) has proved to be one mechanisim that can be used to reach participants in terms of retetion of adherence. You can communicate with the participant that is not answering their call by what’s up and you can send a motivational message to the participants to adhere to their products, or the participants can use it to report any arising issues.
It needs to be managed by one or two staff members who are responsible for retention and adherence.
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Our study has a website and this has proven to be a great and convenient way to communicate information about our study. we are able to provide updates on study progress or recent research evidence on the study topic effortlessly and it allows users to provide feedback or ask questions about the study. Although it is not an interactive site we do have a contact section where users can send enquiries about the study. We have not yet discussed the use of social media because of the potential harm that is associated with it particularly with misunderstood messages. We might use social media at a later stage once a strategy has been outlined and messaging refined.
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Social media has been quite effective in our engagement efforts. Social media and online communication are both fast and fluid.
It is far much easier to get to every one in good time.It is a good media to pass critical information.The underside of social media has been when the messaging is not well understood or the issue is contentious .It makes it a little bit difficult to reach a consensus.A very good example is during the early days of PrEP trials.Many advocates were against the conduct of PrEP since PrEP was giving ARVs to HIV negative people yet many of the HIV positive were yet to receive the drugs.Coming to a consensus in the social media was a bit difficult and a lot of discussion had to be made.When well channeled social media is effective.
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The advent of various social media platforms has, for the most part, been beneficial to our site in regards to engagement. We have been able to reach people who would have been reluctant to approach us or engage in conversation when approached during outreach or community events and we are also able to share information with a broad audience. Many of the participants who are currently enrolled in our clinical trials were reached through a social media platform.
In the future, we would like to start a social media campaign that will get people talking more about our clinic and our research. So far, we have not used social media for actual trial planning; however, as our GPP plan falls into place, I do think that this can be incorporated.
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I echo the comments of many of my fellow learners – social media like whatsapp/ Facebook are amazing for spreading information about our project – especially when our target audience is adolescent girls and young women! We are continually watching the social media platforms to ensure they are not misused and this is something we are constantly aware of. Like others have mentioned, just as easily as it is to spread a positive message, it is also just as easy to spread a negative one! We have to be aware and alert to what is being posted and also the quality of what messages are out there. As a project team, we are in the process of developing the communications plan to realistically develop strategies to engage our stakeholders but I have no doubt that social media will feature highly in the plan. Overall, there are certainly benefits and harms related to social media.
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For the TRUST STUDY, my team is discussing with the CAB currently, just as I said we just developing this norm. And we are taking a close inventory into media outlets or communications agency that can be of help, but we however, need to sensitize them before we allow them have access to information. In Nigeria can be a friend a t the same time they can be compromised. But we are in the process of adopting an effective communication plan process by reaching out to internet bloggers who we know are members of the MSM community that will help safe guard information as an alternative option.
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Currently, we have started inviting MSM friendly communication agencies who have MSM community members working as influential staffs, We have identified internet bloggers and also decided to create a WAS APP group for the TRUST STUDY group for MSM. But however, I agree with Bamidele that information technology also improves trial communication planning and engagement strategies with stakeholders to effectively disseminate research information but it is just taking its stead gradually in the Nigerian terrain. It has both beneficial and harmful potential if not well tailored and managed with respect to the MSM community and the TRUST STUDY Research for MSM in Nigeria.
But , however information technology is necessary and my team has been taking a deep look into how to make it well tailored to bring about effectiveness and send the right information about the ongoing research.
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We see social media and online communication as beneficial to the research conducted at our site. We never had negative posts on the study, and only used the local radio station to spread the news in the community and used our organization’s Facebook page to inform on events and activities. If the research site is proactive in spreading information on the study, the chance becomes smaller that incorrect or negative messages are spread online. Participants created together a what’s app group and invited research team members to discuss issues and research staff members posted comments, when there was a need for clarification. Also during participant adherence events participants had the opportunity to discuss concerns/issues on the study, as well for community members during CAG meetings, stakeholder meetings and community dialogue sessions.
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As a funder, I do not have direct experience with trials being affected by social media and online communication. However, there are clearly positive and negative potential outcomes for trials. In this day and age, it is wonderful to be able to share information relatively inexpensively and quickly to people located just about anywhere in the world. However, as we saw in the example from the module, it is also too easy to spread misinformation. This underscores the importance of having communications and issues management plans in place in anticipation of negative effects as well as to maximize the potential good that can come from these platforms. Additionally, I think that organizations are increasingly seeing the importance of having people on their study teams dedicated to communications, especially online communications, in order to track and pre-empt potentially damaging misleading information. This also demonstrates that these are important team members who have (or at least should!) a specialized skill set. Having a social media and online communications role on a team (if a trial size and funding allows, of course) can be very important and is more than merely posting online, which it may certainly be pre-conceived as such by those less familiar with the skills required. These tasks can be hugely beneficial for trials and to ensure that, much forward planning and appreciation of this role is required to maximize those would-be benefits.
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In regard to Bernice’s comment- I agree that using social media to reach youth and stakeholders working with youth is absolutely necessary. As this is one of my main focuses in the future, this will be something that I do more of. Right now I mainly use craigslist (which is like electronic postings- like flyering) and facebook. Facebook has been a good way to share info, but I haven’t really tapped into reaching stakeholders and actual youth who may be interested. This is something to consider in the future.
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social media has changed how we recruit for studies, but it hasn’t changed how we reach out to stakeholders before a trial begins as much. Although I do think that it will make reaching new stakeholders easier. Other than researching stakeholders and initiating conversation (all which we would have done just as easily on line), we don’t use social media to engage stakeholders early on in trials.
I think social media is mainly a good tool for recruitment and information dissemination. I suppose it could be bad if something negative happens or there is negative feeling towards a protocol- it would just as easy to spread bad information and falsehoods as it is to spread correct information. So in general I think it is important to be careful what you post and how you reach out to possible stakeholders.
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Hello everyone,
I was not engaged any activity related to stakeholders in the past. But In my area social media is very strong In future we will use bulk SMS, Whats apps, Facebook, and other social media to inform the CABs, and stakeholders about research progress. It will produce positive impact on research, communication planning, and engagement strategies by keeping all stakeholders in touch with strong, timely, transparent, and ongoing communication. I thinks on whats apps groups rumors may be produced by some stakeholders in the groups but they can be easily identified and easier to clarify. Its very easy for research team to share information, send key messages, identify and collect feedback from stakeholders. Its fast medium to communicate with stakeholders which produce positive effect on research.
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We have not started to use social media but it will be something that’s unavoidable down the line, due to extreme popularity of the media in China and also among our target population. social media is a tool and it can also be double edged. In a country were traditional media is very tightly controlled, social media offers a bit more space for discussion on more varied topics and therefore are favored by people. on the other hand, it is also a festering ground for rumors, misinformation, errors and nonsense. So in order to get benefit and minimize harm from social media, there definitely needs to be a good communication plan in close consultation with community stakeholders and crafting of accurate messages. I find myself nodding in agreement a lot reading Mark’s reply above.
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For HIV research and stakeholders’ engagement activities, we have recorded improvement in awareness creation on our proposed HIV related projects using platforms such as Whatsapp, Facebook and institution websites. ,However, much success has been achieved with the CBOs, members of PLWHA, field staff and other advocacy groups such as NHVMAG. However, effective communication to trial participants in the community has been challenging due to access difficulty, phone type and network issues. Furthermore, this has not been the culture. But we are now improving on that by creating sub-groups for trial participants to key into especially for those using android phones. We are also sending sending text messages through bulk SMS for notice of meetings and using same medium to link stakeholders to our websites.
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It has not affected my site, we do not have a social media page. But our sister site has a social media page, it helped them recruit low cohort participants, potential participants use the page efficiently.
As for my site, not so many people are on social media, i have explored a possibility of creating a page, by visiting local community social media, but i found that not so many people are on social media.
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Hello Anne, GPP team and my fellow learners,
At my site social media and online communication has really effectevely affected engagement strategies with stakeholders positively. It is cheaper and faster and also reaches multitudes of people in a single click.
However, to avoid misperceptions and all, our social media and online communication with with our stakeholders is done in in a strategies, systematic phases. That is when all aprovals have been obtained, then internal stakeholders are informed, then all stakeholders In groups and level and informed including media houses. This is done to avoid any unnecessary questions that may come up on the media and stakeholders like CAB/CAG may not have information to defenddefend the trial/study.
At this stage, the Zambart communication department, research team and others stage holders design messages to be shared on media and stakeholders are informed prior to the post or share of such information.
Usually training is done for media houses before information about the study in spread to avoid misrepresentation of a trial.
I feel social media and online communication is the cheaper, faster and most effective way to communicate is well handled but the most harmfull if not well handled.
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Dear All
To be quiet honest the social media like What’s up it is to advantage because we use to invite and remind CAG members for meetings and when we had FACTS club events and other site events we used it to invite participants and people supportive of research. Also we in the process of opening up Facebook page for the upcoming studies and to the page for trial update and other related issues. In terms of site communication this methods has been integral part of communication plan so there was no diversion. In terms of online communication also has had positive outcome because when FACTS results came-out many participants had already heard on outcome and was easy to communicate the results during dissemination. However the general public wanted to know more and needed more explanation how was gel used and condom use in a way this provided a platform to do research literacy which helps in eliminating negative issues with facts. Of late media has been positive on research than before. in fact the way sponsors handle the trial communication is so far the best way with strategies of embargo and training of site personnel before the breakthrough. -
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In one of our trials, several sites approached students and young population via social media and local online communities to educate them on our study that was coming up and for which recruitment had started. In close collaboration with the sponsor, new informative and educational recruitment materials were developed – with the major intent to educate the young population on the trial and take away any potential concerns or prejudice on the research that would be conducted.
If we compare with the traditional way of informing and developing materials, this social media “education” was very beneficial for these sites. They did attract more students and young population. We also developed a FAQ document based on all the questions and answers that were shared between the students/young population and the site staff so that other sites could use information.
Close FU will now be needed to evaluate whether this effort of broad education will also be reflected in protocol compliance and visit adherence. We have also developed a Social Impact Questionnaire so that the site can identify and pro-actively work on any other issue or concern that might happen/come up during the trial.
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In my area social media and online communication is beneficial because it’s faster and cheaper.
We can also engage a range of stakeholders especially the Youths to discuss and seek their opinion on the trial.
Although it’s tasking trying to sieve those that have knowledge or even interested in the trial from the numerous
irrelevant write- ups displayed
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The good relationship we maintain with stakeholders( health care workers and community agents) is beneficial to appropriate conduct of the studies on the community because stakeholders help us to know more about the community situation and patients recruitment according to the need of the studies. For example, in a community where we had not have the support of stakeholders (health care workers) as a consequence had a negative impact for the recruitment/follow-up of patients. The source of the lack of this support was stakeholders did not have the enough information about the study and after that, we share the information with them the problems were been improved.
The social media has a dual role during the development of the investigations as they may promote or being in detrimental of them so is necessary the study team and participants must have clear information about the research and thus will not result in distrust and fear in the participants.
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I have a unique point of view since I am affiliated with the research site where events that were presented in the current module’s 505 case study occured. While what occurred was not to my knowledge part of any planning or strategy, we were fortunate that it turned out to be something we and the network were able to leverage positively.
My experiences over time as usage of the internet and web has evolved have taught me that as each new mode of communication emerges, it adds to and does not replace what we’ve already been using. So these new modes don’t replace but add to the larger communication scenario. This sometimes means more, not less work, more, not less planning, and consideration of more, not less contingencies.
I think we need to take care not to romanticize social media and/or online communication or treat them as a panacea. In reality in my experience, the pitfalls of social media are very much like those of traditional mass media – outside of planted stories that stick to press release language and/or coverage by very specialized and invested writers (like those at aidsmap, for instance), the potential for distortion, misinterpretation, and scientific errors is generally high. The only consolation is that most of these problems don’t end the in yield major problems.
Here’s a concrete example regarding the 505 case study cited: What was not reported is that I happened to be sitting at the computer monitoring email when the story broke locally. Although I believe the case study discussed the story being published in our local mainstream daily newspaper, Tennessean, it was actually our local lgbt community newspaper which was the news outlet which first broke the story. I happened to have a good working relationship with the editor and contacted him immediately (as a community activist) about a quote attributed to the local PI that referred to the DSMB halting of injections as a “failure” and some other minor linguistic fine points. Fortunately he agreed to amend the story (which at that point had only been published online.)
We’ve come a long way since 505, and now what you will see at our site with regard to the AMP study is that social media is being leveraged very heavily. I would say this is both beneficial and risk-laden. Social media is highly beneficial when accurate messaging is sourced from the site or network and when best practices are used it attracts a lot of interest in participation. Social media (I’m thinking primarily of facebook, but also others like snapchat and twitter) offers the additional advantage of serving as a primary communication platform for relationship building and post-enrollment contact for may of those who are in the demographic age range that AMP targets in our community.
I think there are risks when participants become very public and there is always the risk that someone from within our outside of the study will begin to use social media to attack or spread misinformation about the study. Our site is encouraged to follow network policy in terms of handling social media, but the bottom line is that it is impossible to control. Just like individuals who have been participants who choose to become public and speak out are impossible to control. Just like mainstream media is impossible to control (but I concede relationship-building can help mediate risk more easily in this instance.) In the end social media is just another communications reality with which we must deal.
I would say the measures that need to be taken include making sure that key talking points are pushed heavily and regularly from the site and network itself so that they carry the most weight and have the most visibility. I think it is very important that relationships with media players be strong so that those resources can be called on for help if an individual goes rogue via social media or the web. It is important that when the site works with participants to promote trial participation via social media, that a kind of consent and counseling process takes place (and even legal releases signed) before that collaboration and promotion occurs.
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