Showing posts with label online. Show all posts
Showing posts with label online. Show all posts

Sunday 18 February 2018

Online Autism Communities

I am often surprised what counts as academic research these days, but I stumbled upon one such paper that I thought might be of general interest.
It is a study from 2017 of the 550,000 comments left on two popular forums, and Both of these forums have since closed down.

A large number of patients discuss treatments in online health communities (OHCs). One research question of interest to health researchers is whether treatments being discussed in OHCs are eventually used by community members in their real lives. In this paper, we rely on machine learning methods to automatically identify attributions of mentions of treatments from an online autism community. The context of our work is online autism communities, where parents exchange support for the care of their children with autism spectrum disorder. Our methods are able to distinguish discussions of treatments that are associated with patients, caregivers, and others, as well as identify whether a treatment is actually taken. We investigate treatments that are not just discussed but also used by patients according to two types of content analysis, cross-sectional and longitudinal. The treatments identified through our content analysis help create a catalogue of real-world treatments. This study results lay the foundation for future research to compare real-world drug usage with established clinical guidelines.

Top 10 treatment by number of users, identified in the ASD data set:-

Number of users

speech therapy
early intervention
special education

The most important building block of future work following this study is to compare the list of treatments discovered in OHCs automatically by the computational tool with established clinical guidelines. For example, while effectiveness of chelation is still under investigation by researchers, it already becomes a rather popular choice among autism community members. It is therefore critical to further quantify how broad the gap is between established guideline and patients’ actual practice. The future work will contribute to understanding how information support and consumption in OHC affect members’ decision makings regarding disease management, and hence how OHC participation makes physical and psychological impact.

I think what is happening is these kind of discussions have moved to other channels like Facebook and also that discussions are going on in closed groups, rather than in public.
Online communities for very rare, but well defined, disorders seem like a great idea and allow people to connect with others facing the same challenges.
This blog is public and so all kinds of people read it, some of whom would never join a closed group. Most readers are parents who come via Google or Facebook, some are regular readers, some are doctors, but there are researchers and even drug producers. Readership is very much skewed to North America. Australia and Eastern Europe are over-represented while the United Kingdom is slightly under-represented. There are almost no readers from Germany and Austria (the original home of autism and Asperger’s), but a fair number from France and not only Bumetanide researchers

The experimental approach put forward here is unorthodox and I know that some researcher readers do not entirely approve, but it is the end result that matters. 
I think the fact that some researchers are aware that lay people are reading about their research, and some are even applying it, is a good thing.
The online communities tend to be discussing supplements and the protocols of alternative doctors. This blog is looking at science and, based on that, seeing what drugs might be therapeutic; this narrows the potential audience somewhat because things do get rather complicated. 
I do not know if anyone has analysed all the comments in this blog, if they did they would see that a small but growing number of people have impressive long term results from repurposing some safe old generic drugs.  Because most people want to be anonymous, these comments do not carry the weight of case reports published in journals, but I think they can still be very useful.
I think only a small proportion of readers actually get access to the novel therapies indicated by the research, it all depends on where you live. Living in a Latin country, or being a doctor clearly helps.