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Yes, I agree with this and going forward we are working to involve our stakeholders earlier in the process, as more time to complete activities due to poor planning costs more money and allocation of resources in terms of staff, etc.
Will you invite them to add their input regarding the development of the protocols for each of the future studies as well? This would probably be helpful as well. Who you will invite, however, will depend on the target population for each trial and the stakeholders’ expertise.
A number of our trials overlap in timelines, therefore, it is a continuous interaction with our key partners and community stakeholders. However, of course it is important to keep those relationships fresh and up to date (introduction of new team members, etc.) as well as continue the open conversation between study teams. As we are all using similar sites (some are the same) it is important we keep each other updated on the activities, barriers, etc. occuring in each of our studies.
For news that affects HIV specifically is there a particular media/news group or source you like to follow?
Great information Dana. I am new to working on HIV trials and am not fairly familiar with the 3 groups you mention (Thai Drug Users’ Network, Thai National Network of People Living with HIV and the Thai AIDS Treatment Action Group) however I am sure some individuals on my team may be familiar with them. Do you know generally how long it takes them to provide input regarding their review of a potential study protocol to be conducted in their country?
In my current trial we did not involve the local stakeholders early enough and were making protocol changes at the time of the Investigator meetings. With the political changes globally we definitely need to be more conscious of the timing of collaborations and local interactions in order to be more efficient and ensure we stick to our timelines as this all relates back to amount and length of funding provided for each project.
Wow, I have to agree there is so much going on here, starting with the country selection for this trial. Prior to selecting Thailand I think the Sponsor should have started dialogue with stakeholders in different potential countries and from those discussions make the most public health AND ethical based decision. Based on the information they would have received I am fairly confident that Thailand would not have been on the final list of countries or the sole country for this trial. Yes and I also would be concerned about the legitimacy of the data from this study. Definitely a bad way of conducting trials on the part of the Sponsor.
I was able to attend the webinar and thought it was pretty good. Anne just confirmed for me how social media can be a good tool to use for your trial, but also how you need to ensure you are monitoring it carefully as it is also a place where people will share their opinion and sometimes may be inappropriate. It is also important to ensure you are definitely aware of the population you want to target to participate in your study and the best way to attract their attention. I liked the example about posting in the correct magazine to attract the correct person (MSM vs. homemaker).
I agree with you regarding the “danger” of social media. Too much room for your message and purpose to be twisted and have to continually worry about defending your research.
As a Sponsor trial leader I do not use social media such as Facebook or Twitter for my trials. We still use the old style of posters and paper flyers, etc. to spread the word. Also, through approved messages used in t.v. and radio commercials. I would suppose that social media would be a bit more difficult because people can add their opinion to what you are advertising for everyone to see. This is why it is very important to create Communication and Issue Management Plans.
Yes!! Completely agree. Alot of times we tend to work in silos and re-invent wheels that waste time, money and resources. This is a great example of breaking down those silos even if it is a different therapeautic area that is being researched.
This is a great idea. I agree, as the site staff are part of the community, their contacts may be equal if not better than some contacts the identified stakeholders may have within the community.
When resources are insufficient to support formal formative research activities, you can still facilitate the participation of community stakeholders in initial outreach and information gathering by partnering with other institutions or groups that have a similar goal to you. Instead of face to face meetings you can also hold virtual meetings, even though not always as effective it is better than not being able to conduct these activities at all and can at least begin the initial input from the team.
In order to maintain a high level of communication between the team and the stakeholders, do you conduct check-in sessions through out the life of the program? I find this helps to avoid any disconduct and/or miscommunication, especially for longer programs.
