Beyond recruitment? Participatory online research with people who use drugs

The use of the Internet by people who use drugs presents an opportunity for researchers not only to successfully recruit drug users to participate in research, but to go further and engage drug users more fully in dialogue. In this paper, we present data arising from a doctoral research project which examines drug use in an Internet society by focusing on the experiences of participants in online dance music and drug discussion forums, and we examine the ethical issues and problems that arose in this context due to the illegal and stigmatised status of drug use. We chose to engage with forum moderators and users instead of treating public Internet forums as freely available “data”. Successes and failures that occurred during this process are outlined, and we discuss what was involved in maintaining the discussion threads once they were accepted and supported by group moderators. Issues that arose in attempting to continue engagement beyond recruitment are also discussed. To conclude the paper, we evaluate our efforts to conduct participatory online research and suggest how other researchers investigating illegal and/or stigmatised behaviours may build on our work.

[1]  S. Butler,et al.  Internet-based Survey of Nonmedical Prescription Opioid Use in the United States , 2008, The Clinical journal of pain.

[2]  Judith Sixsmith,et al.  Accessing the Community: Gaining Insider Perspectives From the Outside , 2003, Qualitative health research.

[3]  P M Boynton.  People should participate in, not be subjects of, research , 1998, BMJ.

[4]  Lisa Maher,et al.  Clients or colleagues? Reflections on the process of participatory action research with young injecting drug users , 2005 .

[5]  Fiona Measham,et al.  Repertoires of distinction , 2009 .

[6]  G. Eysenbach,et al.  Ethical issues in qualitative research on internet communities , 2001, BMJ : British Medical Journal.

[7]  C. Murray,et al.  E-mail: A qualitative research medium for interviewing? , 1998 .

[8]  R. Alati,et al.  Queensland Trends in Ecstasy and Related Drug Markets 2012: Findings from the Ecstasy and Related Drugs Reporting System (EDRS): Australian drug trends series no. 108 , 2011 .

[9]  Sheigla Murphy,et al.  What's in a Label? Ecstasy Sellers' Perceptions of Pill Brands , 2009, Journal of psychoactive drugs.

[10]  C. Duff,et al.  Dropping, Connecting, Playing and Partying: Exploring the social and cultural contexts of ecstasy and related drug use in Victoria , 2007 .

[11]  J. Bromseth,et al.  Public places – public activities ? Methodological approaches and ethical dilemmas in research on computer-mediated communication contexts , 2002 .

[12]  Steven G. Jones,et al.  Ethical Decision-Making and Internet Research: Recommendations from the AoIR Ethics Working Committee , 2004 .

[13]  C. Duff.  “Charging” and “Blowing Out”: Patterns and Cultures of GHB Use in Melbourne, Australia , 2005 .

[14]  J. Finn,et al.  An exploration of helping processes in an online self-help group focusing on issues of disability. , 1999, Health & social work.

[15]  J Sixsmith,et al.  Ethical Issues in the Documentary Data Analysis of Internet Posts and Archives , 2001, Qualitative health research.

[16]  Hsiu-Min Tsai,et al.  Internet communities for recruitment of cancer patients into an Internet survey: a discussion paper. , 2007, International journal of nursing studies.

[17]  Jacqueline L. Schneider,et al.  Hiding in Plain Sight: An Exploration of the Illegal(?) Activities of a Drugs Newsgroup , 2003 .

[18]  C. Fry.  Making values and ethics explicit: A new code of ethics for the Australian alcohol and other drug field , 2007 .

[19]  Sarah Thornton.  Club Cultures: Music, Media, and Subcultural Capital , 1995 .

[20]  Elizabeth H. Bassett,et al.  Ethics of Internet research: Contesting the human subjects research model , 2002, Ethics and Information Technology.

[21]  Storm A. King,et al.  Researching Internet Communities: Proposed Ethical Guidelines for the Reporting of Results , 1996, Inf. Soc..

[22]  J. Sheridan,et al.  Highs and lows: patterns of use, positive and negative effects of benzylpiperazine-containing party pills (BZP-party pills) amongst young people in New Zealand , 2007, Harm reduction journal.

[23]  James Shearer,et al.  Contemporary cocaine use patterns and associated harms in Melbourne and Sydney, Australia. , 2007, Drug and alcohol review.

[24]  Malin Sveningsson.  Ethics in Internet Ethnography , 2008 .

[25]  Shuo Wang,et al.  Challenges of Internet Recruitment: A Case Study with Disappointing Results , 2005, Journal of medical Internet research.

[26]  M. Hall,et al.  Internet recovery for substance abuse and alcoholism: an exploratory study of service users. , 2003, Journal of substance abuse treatment.

[27]  Malin Sveningsson Elm.  How do various notions of privacy influence decisions in qualitative internet research , 2008 .

[28]  C. Treloar,et al.  Ethical challenges and responses in harm reduction research: promoting applied communitarian ethics. , 2005, Drug and alcohol review.

[29]  H. Sumnall,et al.  Use, function, and subjective experiences of gamma-hydroxybutyrate (GHB). , 2008, Drug and alcohol dependence.

[30]  S. Kinner,et al.  Containing ecstasy: Analytical tools for profiling an illegal drug market - NDLERF Report , 2007 .

[31]  J. Redman,et al.  Patterns of use and harm reduction practices of ecstasy users in Australia. , 2006, Drug and alcohol dependence.

[32]  P. Miller,et al.  Using the internet to research hidden populations of illicit drug users: a review. , 2010, Addiction.

[33]  James E. Porter,et al.  The Ethics of Digital Writing Research: A Rhetorical Approach. , 2008 .

[34]  Monica T. Whitty,et al.  Peering into Online Bedroom Windows: Considering the Ethical Implications of Investigating Internet Relationships and Sexuality , 2004 .

[35]  A. Feenberg,et al.  Involving the Virtual Subject , 2001, Ethics and Information Technology.

[36]  Alex Gamma,et al.  Is ecstasy perceived to be safe? A critical survey. , 2005, Drug and alcohol dependence.

[37]  C. Mendelson,et al.  Recruiting Participants for Research From Online Communities , 2007, Computers, informatics, nursing : CIN.

[38]  D. Porpora,et al.  Participatory research: Three models and an analysis , 1993 .

[39]  P. Dalgarno.  Subjective Effects of Salvia Divinorum , 2007, Journal of psychoactive drugs.

[40]  Elizabeth Reid.  Informed Consent in the Study of On-Line Communities: A Reflection on the Effects of Computer-Mediated Social Research , 1996, Inf. Soc..

[41]  Claire Hewson.  Gathering data on the internet: qualitative approaches and possibilities for mixed methods research , 2007 .

[42]  Hiding in Plain Sight : An Exploration of the Illegal ( ? ) Activities of a Drugs , 2003 .

[43]  Axel Bruns,et al.  Uses of blogs , 2006 .

[44]  A. Bruckman.  Studying the amateur artist: A perspective on disguising data collected in human subjects research on the Internet , 2002, Ethics and Information Technology.

[45]  R. Noble,et al.  A pilot study using the internet to study patterns of party drug use: processes, findings and limitations. , 2007, Drug and alcohol review.

[46]  D. Giles,et al.  Inside the “Pro-ana” Community: A Covert Online Participant Observation , 2007, Eating disorders.

[47]  Christina Allen,et al.  What's Wrong with the 'Golden Rule'? Conundrums of Conducting Ethical Research in Cyberspace , 1996, Inf. Soc..

[48]  Real Drugs in a Virtual World: Drug Discourse and Community Online , 2007 .

[49]  C. Christians.  ETHICS AND POLITICS IN QUALITATIVE RESEARCH , 2005 .

[50]  M. Singer.  What Is the "Drug User Community"?: Implications for Public Health , 2006 .

[51]  Leigh M. Smith,et al.  Conducting ethical research online: respect for individuals, identities, and the ownership of words , 2008 .

[52]  Raymond M. Lee,et al.  The SAGE handbook of online research methods , 2008 .

[53]  Charlotte Brownlow,et al.  Ethical Issues for Qualitative Research in On-line Communities , 2002 .

[54]  R. Hollands,et al.  Beyond Subculture and Post-subculture? The Case of Virtual Psytrance , 2006 .

[55]  Michelle M. Kazmer,et al.  QUALITATIVE INTERVIEWING IN INTERNET STUDIES: Playing with the media, playing with the method , 2008 .

[56]  Tom Buchanan,et al.  Differential experiences of the psychobiological sequelae of ecstasy use: quantitative and qualitative data from an internet study , 2006, Journal of psychopharmacology.

[57]  A. Scholey,et al.  Patterns of Drug Use and the Influence of Gender on Self-Reports of Memory Ability in Ecstasy Users: A Web-Based Study , 2003, Journal of psychopharmacology.

[58]  J. Boote,et al.  Consumer involvement in health research: a review and research agenda. , 2002, Health policy.

[59]  M. Hough,et al.  A Growing Market: The Domestic Cultivation of Cannabis , 2003 .

[60]  M. Hough,et al.  Occasional and controlled heroin use: not a problem? , 2005 .

[61]  Lara C. Stache,et al.  Internet and Society: Social Theory in the Information Age , 2012, Rhetoric and Public Affairs.

[62]  W. Seymour,et al.  In the flesh or online? Exploring qualitative research methodologies , 2001 .

[63]  N. Illingworth,et al.  The Internet Matters: Exploring the Use of the Internet as a Research Tool , 2001 .

[64]  Chrissie Gibson,et al.  Rave culture in Sydney , Australia : mapping youth spaces in media discourse , 1999 .

[65]  Michael A. Smith,et al.  Virtual subjects: Using the Internet as an alternative source of subjects and research environment , 1997 .