Online Support - Demos

This paper was written by the Centre for the Analysis of Social Media (CASM) at Demos ... and ethical challenges posed by the collection and analysis of online.
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Online Support Investigating the role of public online forums in mental health Josh Smith Jamie Bartlett David Buck Matthew Honeyman

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PARTNERS CREDITS This paper was written by the Centre for the Analysis of Social Media (CASM) at Demos in partnership with The King’s Fund.

The King’s Fund is an independent charity working to improve health and care in England. We help to shape policy and practice through research and analysis; develop individuals, teams and organisations; promote understanding of the health and social care system; and bring people together to learn, share knowledge and debate. Our vision is that the best possible health and care is available to all. www.kingsfund.org.uk @thekingsfund This paper was funded by the Wellcome Trust.

Published by Demos April 2017 © Demos. Some rights reserved. Unit 1, 2-3 Mill Street London SE1 2BD T: 020 7367 4200 [email protected] www.demos.co.uk

CONTENTS Introduction

4

Methodology and Results

9

Natural Language Processing classifiers and case studies 1. Cries for help 2. Cognitive behavioural therapy 3. Co-morbidity Conclusions

13 14 16 17 22

Future directions

22

Building software

24

Principles for future work

26

Annex 1: Methodology

29

Annex 2: Forum Descriptions

40

Notes

41

4

INTRODUCTION This report seeks to investigate the large amounts of mental health related discussion taking place on public online forums, and to explore the potential for the use of computational techniques to provide robust, actionable insight from these conversations to a wide audience - from healthcare professionals and policymakers to those affected by mental health issues themselves. Furthermore, this study addresses the technical and ethical challenges posed by the collection and analysis of online forum data. The report describes the collection and analysis of one million publicly available forum posts, collected from forums related to mental health. It details investigations into a number of specific areas: an examination of posts from users asking for urgent help online, public discussion around Cognitive Behavioural Therapy, and comments by mental health patients suffering from specific physical conditions. The report also includes a number of posts, paraphrased for the sake of user privacy, which illustrate the types of discourse which takes place on these forums. The methods used to conduct this analysis are described in a detailed methodological annex. The last 10 years have witnessed a dramatic increase in the number of people going online to seek out information and advice, to research health issues and connect with those sharing their experiences. NHS Choices, for example, has seen a steady increase in usage every year since 2011, with over 31 million unique visitor