It’s becoming more common for parents of children with genetic and other forms of tricky disorders to start support groups on social media. These parents not only shared their experiences in helping children to overcome daily challenges brought about by their conditions. They also spread latest research findings and results of clinical trials which they probably had just undergone.
While there is no such thing as “sharing too much”. Since everyone has the rights to stay informed especially if they are dealing with an unknown which confronts the life and death of their love ones every single minute. It’s hard not to wonder how blinded experiments could remain “unseen” when potential subjects are vividly engaged in related discussions. The trend was questioned by Nature recently.
Decentralizing research integrity
Often, members of online support groups shared details of clinical trials they had just participated. Some overtly guessed if they were in the control or experimental groups. Others proposed to initiate their own trials. The exploratory spirit may seem harmless but they may also unknowingly disturbed the usual flow of how experiments are being conducted. This may indirectly changed the passive relationship between researchers and participants.
On the other hand, the open nature of these online support groups became windows for pharmaceutical companies and research institutions to recruit participants and promote their products. Shortage of participants had always been a problem in particular for those who are interested in developing orphan drugs.
It’s already difficult to have individuals with specific demographics and conditions to come on board for a study. This is even more so to keep them after initial trials. Participants tend to lose their patience when they do not associate their research involvements with creating significant or immediate change in their lives.
Some drug companies are trying to cope by adjusting their research protocols. They adhere to the demands of participants based on their time commitment and comfort level. Some patients also took the initiative by collecting data from fellow group members and urged their doctors to launch a case study into their symptoms and disease course.
Technology gives us options but we are unable to prioritize
It can be extremely anxious for parents to witness other children who had undergone the same clinical trials improved but not theirs. Taking no time to waste, parents may jump into the conclusion that their children are in the placebo group and request to participate in a different trial. In extreme cases, eager parents had brought their children for independent testing to find out if they are taking the experimental drug or placebo.
Social media is giving individuals many information and choices of what and how they will like to do with their body and health. There is no systematic study at the moment to address how social media is affecting the results of clinical trials. Most companies are turning a blind eye to the trend and practice.
Researchers believe things will become more complicated as these children involving in clinical trials aged. Older children may begin to have a say on the kind of treatments and experiments they will like to participant.
As medical conditions changes from time to time, options either grow or shrink as a result. Often, patients are not given enough time to weigh the risks and advantages of being in a clinical trial. Most hope that the next trial will be their Lorenzo’s oil. Once again we are questioning whether technology is helping or harming us.
A science writer with data background and an interest in current affair, culture and arts; a no-med from an (almost) all-med family. Follow on Twitter.