Methodological Issues and Challenges in eHealth Research Panel

Medicine 2.0

Introduction: Web 2.0 technologies and approaches offer enormous advantages for consumers, health practitioners and eHealth researchers, but they also present challenges, particularly for the ethical conduct of research. Method: A recent systematic review of Internet-mediated research by Lisa Whitehead1 in our panel revealed that the key challenges reported by online researchers cluster into three key areas: 1. Sampling issues Recruitment methods Repeat participation Identity misrepresentation 2. Ethical issues Seeking informed consent Anonymity, privacy and protection of confidentiality Harm minimisation Site security 3. Measurement issues Validity Reliability This panel discusses the above challenges and profiles ethical and practical solutions to them. To stimulate audience discussion, we use our Australia / New Zealand Web 2.0 research studies below as examples of hurdles and solutions. Research Study 1: Online help, apomediation and support from "Informed Supporters" (expert patients) to assist people recently diagnosed with bipolar disorder to take control of their condition. This study investigates whether the role of apomediaries, offered in association with an online psycho-education program, extends beyond helping users with information to collaborating, providing emotional support and giving practical help within the bounds of a serious mental illness. Ethical issues relating to confidentiality and privacy will be discussed. (Dr J Proudfoot, Black Dog Institute, Australia). Research Study 2: The health of tertiary students: exploring on-line and postal data collections methods. This study randomly assigned 2,000 students at a New Zealand University to complete a survey on physical and emotional health either on-line or by post to explore the reliability and validity of the data collection measures and process. The study adds to debate on the potential impact of data collection mediums on results, particularly for measures of subjective symptomatology (e.g. fatigue and anxiety). (Dr L. Whitehead, University of Otago, New Zealand) Research Study 3: A randomised controlled trial evaluating a 12-month online relapse prevention program 'Recovery Road for Bipolar Disorder'. This study utilised online recruitment of participants through a web-based screening questionnaire, obtained informed consent through an online enrolment function and incorporated automatic randomisation into either a study or a control group. (Dr C Barnes, University of New South Wales, Australia, in collaboration with Sentiens Pty Ltd Perth) Research Study 4: 'ReachOut! Central' (ROC: http://roc.reachout.com.au/flash/index) is a web-based interactive educational game using 'real life' scenarios and role-play to assist young people to identify and develop practical coping skills for dealing with life stressors that may be precursors to mental health problems. The study incorporated online recruitment, registration and informed consent procedures, and the use of evaluative online questionnaires and collection of participant program usage statistics. These elements, along with the unique features of ROC program, will be discussed. (Dr Britt Klein, Swinburne University, Australia, in collaboration with Inspire Foundation Australia) Discussion: Our panel will facilitate discussion about common ethical challenges in Web 2.0 research and collaboratively generate workable solutions to the issues. 1 Whitehead, LC. (2007) Methodological and ethical issues in Internet-mediated research in the field of health: An integrated review of the literature. Social Science & Medicine, 65, 782-791.