Elsevier

Social Science & Medicine

Volume 70, Issue 3, February 2010, Pages 485-492
Social Science & Medicine

Internet-based trials and the creation of health consumers⋆

https://doi.org/10.1016/j.socscimed.2009.10.051Get rights and content

Abstract

In this paper we document the experience of participating in novel randomised controlled trials for panic disorder – where face-to-face and Internet delivery of cognitive behavioural therapy are compared. Our analysis is based on 18 months of observation and in-depth interviews with 10 trial participants and 8 trialists in Victoria, Australia. We argue that the participants are positioned as active health consumers and approach the trial as they would other self-help practices. High levels of individual responsibility are assumed of participants in these trials, which they accept by approaching the trials reflexively and searching for information and strategies they can employ while building their health literacy on panic disorder. Although the researchers set the parameters of the treatment and interaction, increasingly the participants choose the extent to which they will comply with their defined role. For the participants the trial is one of the ‘pick and mix’ options of available treatment and we suggest it is a compelling example of contemporary health consumption.

Introduction

In this paper we document the experience of participating in Internet-based mental health randomised controlled trials (RCTs) which has received very little attention in either biomedical or social science literatures. Broader shifts in mental health care intersect in these trials for the treatment of panic disorder, including the use of the Internet for health care provision, the rise of therapeutic culture and the consumer model of health. We describe the forms of subjectivity created in the trials so that participants see themselves as responsible consumers and the trials as one option amongst an array of others in the therapeutic marketplace.

We begin by reviewing the literature on Internet-based RCTs for mental health problems. We then outline the development of treatment for panic disorder and discuss the broader social context of therapeutic culture and health care consumption which are key to understanding the trials and forms of subjectivity they foster.

Section snippets

Internet-based randomized controlled trials for mental health problems

With the increasing influence of evidence-based medicine, the RCT is considered the “gold standard” for providing the best evidence for treatment interventions for health conditions. RCTs for online treatment of mental health issues are rapidly developing but there is little research on participants’ perspectives on being in these trials. Randomised trials involve random allocation of participants to different treatment groups, one which receives the treatment under investigation and at least

Panic disorder

Until 1980, panic disorder was ill-defined and rarely diagnosed. In the early 1980s patients presenting with anxiety described feeling generally stressed, but by the end of that decade they began to describe their experiences more precisely, and the term “panic attack” came into general use (Healy, 2004, p. 220). Panic disorder as a distinct diagnosis entered into social consciousness and common usage following the publication of the third edition of the Diagnostic and Statistical Manual

Therapeutic culture

Writers such as Rose (1999) and Furedi (2004) have agued that psychological discourse has become so powerful that it is a defining feature of Western culture which has entered into common usage, providing new ways of structuring our experiences. Concepts from the arenas of psychology, counselling and self-help—or therapeutic culture—have now become pervasive throughout society.

It has been convincingly argued that individuals in contemporary society lack traditional social structures with which

Health consumption

In recent decades, alongside the rise of therapeutic culture, there has been a shift toward consumerism in the way health care is understood and delivered in contemporary liberal democracies. Clarke (2007 pp. 160–161) defines consumers as “self-possessing and self-directing individuals” who exercise “choice in pursuit of self-realizing life projects.” Patients are now encouraged conduct themselves as active consumers of health care services (Henderson & Petersen, 2002). Health consumption

Research method

Our qualitative exploration of this series of Internet-based RCTs draws from fieldwork conducted by the first author, which involved a total of 18 formal interviews and 18 months of part-time participant observation with the team of clinical research psychologists from 2004 to 2005. Two of the 8 researchers who were interviewed acted only as therapists at various times during the trial and the other 6 worked as both researchers and therapists. Questions were asked about both roles, the

Findings

In the trials participants were encouraged to be both ‘good consumers’ by actively engaging in the therapy and ‘good participants’ by fulfilling their obligations to the trial. For the researchers these subject positions appear to be synonymous. For the participants there was a tension between being a ‘good participant’ and a ‘good consumer’ and although they recognised both roles, health consumption was given a higher priority. Ultimately participants used the trials as one source of treatment

Discussion and conclusion

The forms of subjectivity fostered in the trials were motivated health consumers and guilt avoidant, active participants. For the researchers the role of “good consumer” was synonymous with the role of “good participant”. By framing the Internet-based participants as consumers, the researchers positioned them to take on increased levels of responsibility in relation to their obligations to the trials and their motivation to help themselves.

The participants did not passively accept their

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    ⋆

    We would like to acknowledge the Institute of Health Services Research at Monash University, Prof. Sally Green, the Australasian Cochrane Collaboration and an APA(I)scholarship which supported this research. We are grateful for the helpful comments of Alan Petersen, Mark Davis and Joshua Mullan. We also thank the researchers and participants for sharing their experiences with us and making this research possible.

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