Personally, I think the research community worries too much.
Sifting the Evidence
Suzi Gage
http://www.theguardian.com/science/sifting-the-evidence/2014/mar/20/is-the-internet-harming-medical-research
It has never been easier for patients to support each other using social media, but might this undermine clinical trials?
While the movie Dallas Buyers Club might not have been completely factually accurate, it raises an interesting question about medical research. The movie depicts experimental trials for Aids treatments in the USA in the 1980s, and how a group of patients involved in the trials came together to share their experiences about treatments, side effects and the like, eventually smuggling the experimental drugs into the US and selling them to fellow patients.
Leap forward to the present, and in this online age it has never been easier for patients to seek out each other and discuss the minutiae of their symptoms and treatment.
An opinion piece in Nature recently called for researchers to consider participants’ use of social media, as it might compromise the integrity of clinical trials. However, it also pointed out the potential benefits of social media to researchers (and patients) as well.
If you find yourself diagnosed with an illness, it’s a natural reaction to want to seek out as much information as possible about it. And of course, we turn to the internet to find it. But beyond that, patient self-help groups can be incredibly valuable in preventing a person feeling like they’re on their own; support from someone who completely understands how you’re feeling can make a huge difference. The internet has made this sort of peer support easier, even for groups who can’t meet up in person (people with cystic fibrosis for example run the risk of cross-infections if they meet in person).
There are a number of reasons, though, that patients in clinical trials might risk undermining the trial if they discussed their experiences with each other. And what’s more, they might not even realise they’re doing so. Clinical trials are double-blinded wherever possible, meaning both the researcher and the participant don’t know whether the participant is in the experimental or control condition. The randomisation will be set up by someone other than the researcher who interacts with the patient, so they will give a pot of pills (or another treatment) to the participant, without knowing whether these are sugar pills, or the medicine being investigated.
There is plenty of evidence why this is important. If the people administering the trial know who is in what condition, they may, consciously or unconsciously, treat people differently. This could involve seeing improvements more in the group you’re expecting to improve more, or downplaying side effects.
But participants talking to each other about their experiences within a trial might accidentally unblind them as well. Hearing about other participants’ side effects might make a person more likely to report such things themselves. It may also become clear after talking to other participants in a study whether you are in the treatment or placebo group, which might affect how you report your symptoms next time you speak to the study organisers, without your even realising.
Before these digitally connected days, trials could operate out of a variety of different locations, minimising this bleed from participants. Nowadays, when patients can discuss their experiences digitally, physical distance is no longer a barrier.
It’s unlikely that participants are deliberately sabotaging the trials they are involved in. After all, they have signed up to be in the trial in the first place. The Nature editorial is clear in suggesting researchers need to actively consider this problem, and discuss with participants the potential harm to the study from sharing information about symptoms and side effects.
All this isn’t to say that the internet shouldn’t be used by those seeking comfort and solidarity from those in the same situation as them. In fact, there’s evidence to suggest that online support groups of this kind might provide health benefits as well as reassurance.
The internet isn’t going anywhere, and patients should do whatever they feel will help them come to terms with a diagnosis and understand their illness. But as the Nature piece concludes, it’s something researchers need to consider. What is the effect of social media on the biases in trials, and can patients in trials be encouraged to avoid accidentally un-blinding themselves without forcing them to give up these valuable support networks?
Sifting the Evidence
Suzi Gage
http://www.theguardian.com/science/sifting-the-evidence/2014/mar/20/is-the-internet-harming-medical-research
It has never been easier for patients to support each other using social media, but might this undermine clinical trials?
While the movie Dallas Buyers Club might not have been completely factually accurate, it raises an interesting question about medical research. The movie depicts experimental trials for Aids treatments in the USA in the 1980s, and how a group of patients involved in the trials came together to share their experiences about treatments, side effects and the like, eventually smuggling the experimental drugs into the US and selling them to fellow patients.
Leap forward to the present, and in this online age it has never been easier for patients to seek out each other and discuss the minutiae of their symptoms and treatment.
An opinion piece in Nature recently called for researchers to consider participants’ use of social media, as it might compromise the integrity of clinical trials. However, it also pointed out the potential benefits of social media to researchers (and patients) as well.
If you find yourself diagnosed with an illness, it’s a natural reaction to want to seek out as much information as possible about it. And of course, we turn to the internet to find it. But beyond that, patient self-help groups can be incredibly valuable in preventing a person feeling like they’re on their own; support from someone who completely understands how you’re feeling can make a huge difference. The internet has made this sort of peer support easier, even for groups who can’t meet up in person (people with cystic fibrosis for example run the risk of cross-infections if they meet in person).
There are a number of reasons, though, that patients in clinical trials might risk undermining the trial if they discussed their experiences with each other. And what’s more, they might not even realise they’re doing so. Clinical trials are double-blinded wherever possible, meaning both the researcher and the participant don’t know whether the participant is in the experimental or control condition. The randomisation will be set up by someone other than the researcher who interacts with the patient, so they will give a pot of pills (or another treatment) to the participant, without knowing whether these are sugar pills, or the medicine being investigated.
There is plenty of evidence why this is important. If the people administering the trial know who is in what condition, they may, consciously or unconsciously, treat people differently. This could involve seeing improvements more in the group you’re expecting to improve more, or downplaying side effects.
But participants talking to each other about their experiences within a trial might accidentally unblind them as well. Hearing about other participants’ side effects might make a person more likely to report such things themselves. It may also become clear after talking to other participants in a study whether you are in the treatment or placebo group, which might affect how you report your symptoms next time you speak to the study organisers, without your even realising.
Before these digitally connected days, trials could operate out of a variety of different locations, minimising this bleed from participants. Nowadays, when patients can discuss their experiences digitally, physical distance is no longer a barrier.
It’s unlikely that participants are deliberately sabotaging the trials they are involved in. After all, they have signed up to be in the trial in the first place. The Nature editorial is clear in suggesting researchers need to actively consider this problem, and discuss with participants the potential harm to the study from sharing information about symptoms and side effects.
All this isn’t to say that the internet shouldn’t be used by those seeking comfort and solidarity from those in the same situation as them. In fact, there’s evidence to suggest that online support groups of this kind might provide health benefits as well as reassurance.
The internet isn’t going anywhere, and patients should do whatever they feel will help them come to terms with a diagnosis and understand their illness. But as the Nature piece concludes, it’s something researchers need to consider. What is the effect of social media on the biases in trials, and can patients in trials be encouraged to avoid accidentally un-blinding themselves without forcing them to give up these valuable support networks?