Accessing Online Data for Youth Mental Health Research: Meeting the Ethical Challenges

Abstract

This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics (Markham and Buchanan 2012) when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public data from Digital Mental Health (DMH) services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users' expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research that includes vulnerable young people as research participants in an ethical manner. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users' control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and 'read more' options (Bergin and Harding 2016).

Digital Mental Health for Young People: A Scoping Review of Ethical Promises and Challenges

“…Authors argued that if the data are insufficiently secured, hence at risk of being breeched, multiple negative consequences are expected to arise from patient mistrust. First, patients' trust in their psychiatrist or psychotherapist may be lost, tarnishing or at least negatively influencing the doctor-patient relationship ( 19 , 26 , 28 , 32 , 34 , 41 ). Second, the prospect of privacy breaches and security vulnerabilities is expected to decrease the acceptability of digital mental health technologies ( 40 , 43 ), leading to an even bigger vulnerability of already exposed people and increasing the unease and uncertainty of the users toward the technology ( 19 , 38 , 40 , 41 , 43 ).…”

“…First, patients' trust in their psychiatrist or psychotherapist may be lost, tarnishing or at least negatively influencing the doctor-patient relationship ( 19 , 26 , 28 , 32 , 34 , 41 ). Second, the prospect of privacy breaches and security vulnerabilities is expected to decrease the acceptability of digital mental health technologies ( 40 , 43 ), leading to an even bigger vulnerability of already exposed people and increasing the unease and uncertainty of the users toward the technology ( 19 , 38 , 40 , 41 , 43 ). Other authors highlighted that mistrust in digital mental health technologies is further aggravated by the fact that patients often feel that technologies collect too much information ( 38 ) and develop sceptical attitudes due to the rapid speed of technological evolution ( 21 , 38 ).…”

“…Another challenge identified in the literature is the unclearly defined expectation of which parties have to consent to data processing in digital mental health applications ( 19 , 26 , 37 , 41 ). Authors also reported insufficient clarity about the adequacy of consent obtained through digital mental health applications, in particular regarding the type of data processing or intervention that the user is consenting to ( 28 , 40 , 41 , 43 ).…”

“…These privacy weaknesses include illicit access by third parties to confidential patient-related information, cybercrime and accidental data leakage. Data security and privacy weaknesses are likely to have a negative snowball effect on patient trust and the doctor-patient relationship ( 19 , 26 , 28 , 32 , 34 , 41 ). Also, they are expected to decrease the acceptability of digital mental health technologies ( 40 , 43 ) among younger people.…”

Data sharing in the age of predictive psychiatry: An adolescent perspective

“…Associated issues surrounding who owns and who should be granted access to mental health data have also been raised [12,16]. In the context of minors, researchers have debated who has the right to manage a child's risk, and raised privacy concerns regarding data sharing [11,17,18].…”