Using the web to explore experiences of health and illness

One of the first places many people turn to when they have a health concern is the internet (assuming they have access, sufficient privacy, can read and so on).  This may be especially true for mental health conditions, given the ambiguity and stigma that sufferers often experience.

My colleagues, students and I have been using the web for several years now, to explore the concerns of people with various health conditions. My primary interest is in polycystic ovary syndrome (PCOS).  Internet discussions can tell us a lot about the worries and hassles of patients, and how interacting with fellow sufferers can meet needs that aren’t served by traditional healthcare services. For example, work I did with students Maxine Aston and Janat Kunihira identified the psychosocial issues that most concerned women and young girls with PCOS.  These often included problems that are ignored in validated measures that are used by health professionals. 

Traditionally, practitioners who take the trouble to measure the impact of PCOS on patients’ quality of life administer questionnaires about emotions, body hair, weight, infertility, and menstrual problems.  These are indeed important areas of concern.  Unfortunately the questionnaires fail to assess the impact of key symptoms such as acne, and leave little scope for patients to express or define the emotions that are troubling them.  When we looked at what users discuss on internet support forums, we found issues that were simply not tapped into by existing questionnaire measures. Difficulties getting a clear diagnosis, obtaining information about treatment options, dealing with less than supportive health professionals and handling unpleasant side effects of treatment were all significant sources of distress.  We recommend that these be included as ‘domains impacting on health related quality of life’, if researchers and professionals are to get a clearer picture of the impact of PCOS.

In the cases above, we used the web to collect ‘naturalistic’ data, without the researchers intervening or interacting with forum users. One of the benefits of this approach is that patients or forum users may feel freer to express concerns that really bother them.  With pressure of time in a clinic setting, and more (or less) subtle pressure to be a good (compliant) patient, service users may be reluctant to broach sensitive personal topics such as body shame, self-loathing, binge eating or embarrassing treatment side effects. They may also be unwilling to criticise the way their health professional deals with them, for gratitude or fear of rejection.  Looking at what patients talk to each other about, and the kinds of help they seek and offer online, may give us a more ‘ecologically valid’ measure of the impact their condition is having on their quality of life.

As well as giving us access to the thematic content of online discussions, using web forum data can also shed light on key health behavioural processes. Social support (e.g. practical, emotional or informational assistance) is a much cited factor that mediates our responses to potential stressors, and may act as a buffer to prevent physiological stress responses triggering physical disease.  Student Sarah Murphy and I analysed threads on PCOS discussion forums, looking at what kinds of support were more often sought by users initiating message threads, and what kinds of support were most often offered by users who responded. Our findings identified both social support strengths of the online discussion forums, and gaps (especially health information gaps) that may need to be addressed by healthcare providers.

Occasionally I have met scepticism or resistance from fellow professionals when I have advocated the use of internet data collection techniques. I am primarily a qualitative researcher – that is I am interested in analysing in depth accounts of people’s lived experiences. Critics sometimes argue that messages posted online will contain nothing psychologically meaningful. They suggest that posts in forums will be too brief to shed any real light on significant thought s and emotions. A student once had a submission for ethical approval of her study rejected on this basis. As users of web forums will already be aware, users are often surprisingly willing to write extensively about their experiences, and extraordinarily generous in offering support to others. Not only does this suggest that self disclosure (in a safe environment) may have psychosocial benefits, but that being able to offer support to others may be health enhancing. It also means that canny researchers have a rich source of qualitative data  - ready transcribed and good to go.

Colleagues, students and I have also used web based social networks to recruit people and elicit ‘new’ data from them for the purposes of research.  This typically involves using forums to invite people to complete an online questionnaire and/or participate in some form of interview. For example, student Kathryn Scouller and I collected detailed accounts of positive and negative healthcare experiences from 99 women with PCOS, using an online survey site.  Again, some reviewers have been doubtful about the suitability of online survey methodology to collect in depth personal accounts. The generous self disclosure of women in our study suggests that this is not necessarily the case.

I am very pleased to be supervising a Kathryn Wells this year who is investigating the experience of people with anxiety who have used computerised CBT.  She will be recruiting users of anxiety discussion forums to complete an online qualitative questionnaire, face to face or telephone interview. Kathryn also got through the ethics approval process first time and with no amendments to her study!  So it looks as though research governance processes are beginning to recognise the great potential web data has for psychology and health related investigations.

References

Aston, M., Kunihira, J., and Percy, C. (2008) 'Psychosocial Concerns of Adolescents with PCOS: Naturalistic Data Collection from an Internet Discussion Forum' Poster presented to British Psychological Society, Division of Health Psychology & European Health Psychology Society, Annual Conference, University of Bath, September.

Percy, C. and Murray, S. (2010) 'The Role of an on-Line Peer-to-Peer Health Community in Addressing Psychosocial Concerns and Social Support in Polycystic Ovary Syndrome'. International Journal of Web Based Communities 6 (4), 349-361

Links

Verity - the UK patient charity for Polycystic Ovary Syndrome 

PCOSQ - the health-related quality of life measure most commonly used for PCOS

Some work we did using the PCOSQ

www.endocrine-abstracts.org/ea/0013/ea0013p189.htm

www.endocrine-abstracts.org/ea/0013/ea0013p190.htm

Some critical analysis of the PCOSQ

Surveysite we have used a lot in our research (other commercial and free websites are available!)

EXAMPLES OF ANXIETY SUPPORT ONLINE

http://www.psychforums.com/ - A support forum for those suffering from different mental disorders.

http://www.ccbt.co.uk/ - CCBT Limited delivers evidence based computer-aided cognitive behavioural therapy (CCBT).  The FearFighter™ Treatment is the only product endorsed by a national regulator (NICE in the UK – TA097) for an Anxiety Treatment.

http://www.anxietysocialnet.com/ - A fast growing social networking site for those suffering from Anxiety Disorders. It allows its members to write anxiety diaries to share their experiences, post questions, pictures and articles have one-to-one chats with other members and create and join groups.

Kathryn says if anyone wants more information on her computerised CBT study feel free to email her at wellsk@uni.coventry.ac.uk

None of the sites mentioned above are endorsed by Carol, Kathryn, or Coventry University.