Citizen Consultation on Problematic Usage of the Internet: Ethical Considerations and Empirical Insights From Six Countries

Abstract

Citizens and scientists can work together to improve the collective well-being, if citizens are inspired to help the advancement of science, and researchers motivated to listen to the voices of citizens. The benefits of such collaboration are increasingly recognized by both citizens and scientists, as reflected in the growing number of related publications and initiatives. This is especially relevant for emerging areas of research, where early involvement of citizens could help to envision, prioritize, and plan prospective studies. The Problematic Usage of the Internet (PUI) is one such area, which is fast becoming a public mental health concern. However, there remains a lack of clarity regarding the practical guidelines and ethical requirements for citizen involvement at the earliest stages of PUI. In our paper, we propose a conceptual framework and a template for initial involvement of citizens in PUI. They are derived from our community case studies, conducted in six European countries (Georgia, Greece, Malta, North Macedonia, Portugal, and Spain) and consisting of consultation with diverse groups of interested citizens (students, parents, teachers, and health professionals). Informed by our consultation exercises, we also highlight four ethical aspects for citizen involvement in the research on PUI or novel disciplines in general. They follow simple guiding principles to ensure that scientists will: enable a long-term commitment and inclusive opportunities for citizens, challenge established power hierarchies, and support collaboration, co-production and co-authorship with citizens. We believe that the proposed practical guidelines and ethical considerations, provide a valuable foundation on which to advance our understanding and generate international strategies for citizen involvement in PUI.

Advances in problematic usage of the internet research – A narrative review by experts from the European network for problematic usage of the internet

“…The terms 'patient and public involvement' (PPI) or 'citizen involvement' are commonly used to describe research conducted 'with' or 'by' members of the public, rather than 'to', 'about' or 'for' them [262]. PPI involves citizens in all stages of research, including early during the developmental stages of research, prior to the design stage, and may be especially important for emerging research disciplines (like PUI), when underpinning constructs are not well understood [263]. There are also strong ethical and political arguments supporting PPI in decision-making about research and health care services, as a citizens' right [264,265], to provide a fair opportunity for equal, safe and dignified collaboration, co-production and co-authorship alongside researchers.…”

“…Recognizing the potential of PPI for envisioning, identifying, prioritizing and planning future research on PUI, we have engaged with citizens in multiple ways within our EU-PUI COST Action (CA16207). International consultation exercises across six European countries were a starting point, involving diverse groups of citizens, including young people, students, parents, teachers, and health professionals [263]. This consultation aimed at identifying the present awareness (knowledge base and knowledge gaps), ongoing concerns (attitudes, beliefs, perceived difficulties and specific worries) and future needs of citizens regarding PUI.…”

“…As the largest international network of researchers on PUI, we will continue to raise awareness regarding best practices of PPI, including ethical and reporting issues in scientific journals [263]. It is important that health journals provide the opportunity and guidance for PUI researchers to clearly describe how citizens have been involved in the research being reported.…”

Problematic use of the internet during the COVID-19 pandemic: Good practices and mental health recommendations

“…Standardized international instruments for effective screening and assessment of those conditions might prove invaluable in times of the pandemic. When it comes to the specific domain of PUI under COVID-19, differentiating between high and problematic internet use is the first challenge that needs to be addressed by means of applying adequate instruments and consulting interested groups of citizens [61]. The PUI in general could be quickly assessed with the Problematic Internet Use Questionnaire (PUIQ) existing in longer (18 items) version [62] and shorter (9 or 6 items) variants [63,64], all recommended based on their brevity, ease of use and good psychometric properties [65].…”

Patient and Public Involvement in Youth Mental Health Research: Protocol for a Systematic Review of Practices and Impact

“…However, there has been criticisms pointing to the limited evidence on the real (and not only expected) impacts of PPI (the resulting effects of undertaking PPI in a research study) (e.g., Bailey et al, 2015). Such lack of evidence of PPI has been associated to inadequate or insufficient reporting of the practices and the absence of methods to assess impacts (Staniszewska and Denegri, 2013;van Schelven et al, 2020;Gjoneska et al, 2021;Jones et al, 2021). Many studies include only partial information, which hinders our understanding of what works, for whom, in what context and why.…”