Mine your Data – Why understanding online health communities matters

Originally posted on the NatCen blogsite on 10/11/16 

Aude Bicquelet is Research Director in the Health team. Prior to joining NatCen in 2016, she held a fellowship at the LSE (Department of Methodology) where she taught courses on Research Design, Mixed-Methods and Text Mining approaches. 

Aude specialises in the analysis of ‘Big Qualitative Data’ on health related issues and has worked with professional and regulatory health bodies such as the National Institute for Health and Care Excellence (NICE) and the Royal College of Physicians.  Methodological and substantive outputs of her research have been published in academic journals; she has also published a book on ‘Textual Analysis’ with Sage.

In addition to her interest in Health policies she is interested in Social and Political attitudes and has researched widely in the areas of political participation and élites’ attitudes towards the EU. 

A staggering 73% of adults in the UK turn to the internet when experiencing health problems. Whether it is to check symptoms, find out about available treatments or share experiences about living with a particular condition, the internet has become the first port of call with many turning to the web before they even consider going to see a doctor. While many of these conversations take place on health-related websites such as Patient or Netdoctor, people suffering from health conditions also share their experiences on social media – and health practitioners should take note.  

Earlier this week I presented findings from a recent study looking into how people use social media to discuss health issues at the ESRC Festival of Social Science. In this study, funded by the NCRM, we used text mining techniques to analyse comments about chronic pain posted under YouTube videos.  

We found that chronic pain sufferers use YouTube to describe their experiences and vent their frustration. We analysed over 700 YouTube comments, and found they can be sorted into one of five categories:

• Sharing Experiences: commenters thank each other for sharing their experiences in the videos posted on the website, emphasising tolerance and empathy for chronic pain sufferers.
• Expressing Frustration: chronic pain sufferers expressed their frustration in their own words. These illustrate how YouTube and other social media offer new avenues for communicating pain outside clinical contexts.
• Coping with Pain: chronic pain sufferers used social media to share their daily practices to cope with chronic pain.
• Alternative Therapy: commenters spoke openly about their use of alternative medicines, illegal drugs or alcohol to manage their pain. The often conflicting relationship with clinicians – who were perceived as over- or under-medicating – was also common in this category.
• Risks and Concerns: they also discuss the risks associated with different types of medication – in particular, addiction and overdose - along with increased risks of depression associated with some treatments against pain.

The insights gained from social media research provide important substantive information for health practitioners. People communicate online in a way they don’t during interviews with researchers or during doctors’ appointments. Online forums and social media are rife with information that’s difficult to obtain through traditional research techniques where social desirability, fear of judgement or stigma, and wanting to be seen as ‘functioning well’ may influence what people are willing to say.  From a purely practical perspective, they also provide freely available naturally occurring data with access to (at times) to hard to reach groups.

Of course, there is a great deal of uncertainty around how to harness the opportunities of analysing the wealth of health information posted online in a representative, robust and ethical way.

Despite their usefulness and efficiency, analyses of Internet comments on health forums do raise a host of concerns such as representativeness – where the views of one cohort in a population having access, technical skills and inclination to post comments on Internet websites are over represented while the views of others are excluded (i.e. the so-called ‘digital divide’) and consent – where, online commentators may not expect to be research subjects.

Nevertheless, the explosion of Big Data and the popularity of online communities might precipitate the need to integrate social media analysis and health research in the near future. For instance, it has been shown that patients who visit their doctors with inappropriate or misinterpreted information from the internet will do little to enhance doctor–patient communication (see Ziebland 2004). But, doctor-patient communication could be improved simply if health professional themselves were better informed about the common fears and sometimes the common ‘myths’ disseminated on online health communities.

Watch Aude’s presentation from NatCen’s event ‘What Social Media Can Tell us about Society’, live from Twitter’s London HQ. This event was part of the ESRC Festival of Social Science. 

If you’re interested in how social media research can help you, please get in touch: aude.bicquelet@natcen.ac.uk or new-business@natcen.ac.uk.