Could Online User-Generated Content Revolutionlise Health Services?

The last decade has witnessed a dramatic increase in citizens using the internet to find health advice and share health experiences, ranging from official accredited advice such as NHS Choices to un-moderated, citizen-led chat rooms and forums. They vary greatly from a helpful source of support, and advice for patients and citizens, to very dangerous and inaccurate information.

But this citizen and patient generated data is also a potentially valuable source of untapped patient feedback, experiences, views and behaviours.  However, at present there are no systematic efforts to collect and analyse these new data sets, and no common understanding of how online communities can be integrated into wide health care.  Research into precisely how and why many people seek or share information about health online remains fairly limited. Despite advances in data analytics to collect and analyse big social data of this type in commercial settings, there have been only limited attempts to pilot the ability of these technologies to transform unregulated health data into something useful and useable, and, while the potential is recognised, they require more careful and robust evaluation of methods employed.

CASM, in partnership with the respected health think-tank The King’s Fund are undertaking a one year study, piloting the ability of big data analytics (specifically web-crawling and machine learning) to help tap into and make use of this new citizen generated health data. This study will explore whether this data can be exploited to:

1)    Spot trends in citizen-generated unregulated health data online, using a pilot study drawn from mental health.

2)    Provide  useable  and  robust  insight  for  health  professionals, clinicians, policy makers, and commissioners  that  will  in  turn enable them to:

• Quickly spot emerging trends
• Provide early warning signs where there might be a lack of official provision, and use online data to inform a response
• Better  understand  public  and  patient  attitudes  and  feedback  towards  certain  types  of treatment
• Understand the risks and opportunities to patients of these source of information
• Understand the potential uses of this information by clinicians and health services
• Examine the ethical, regulatory and legal implications (most principally, what are the ethical considerations of collected personal data of this kind, and how it can be done without harming the individuals involved.)

3)    Examine  the  potential  for  further  and  wider  application  of  these  methods  within  mental health, and beyond.

This project is supported by The Wellcome Trust, and will be completed in Summer 2016.

For further information on the project, please contact Jamie Bartlett.

For media enquiries, please contact Sophie Gaston.