BACKGROUND: Acute myeloid leukemia (AML), a rapidly progressing cancer of the blood and bone marrow, is the most common and fatal type of adult leukemia. Therapeutic web portals have great potential to facilitate AML research advances and improve health outcomes by increasing the availability of data, the speed and reach of new knowledge, and the communication between researchers and clinicians in the field. However, there is a need for stakeholder research regarding their optimal features, utility, and implementation. METHODS: To better understand stakeholder perspectives regarding an ideal pan-Canadian web portal for AML research, semi-structured qualitative interviews were conducted with 17 clinicians, researchers, and clinician-researchers. Interview guides were inspired by De Laat's "fictive scripting", a method where experts are presented with scenarios about a future technology and asked questions about its implementation. Content analysis relied on an iterative process using themes extracted from both existing scientific literature and the data. RESULTS: Participants described potential benefits of an AML therapeutic portal including facilitating data-sharing, communication, and collaboration, and enhancing clinical trial matchmaking for patients, potentially based on their specific genomic profiles. There was enthusiasm about researcher, clinician, and clinician-researcher access, but some disagreement about the nature of potential patient access to the portal. Interviewees also discussed two key elements they believed to be vital to the uptake and thus success of a therapeutic AML web portal: credibility and user friendliness. Finally, sustainability, security and privacy concerns were also documented. CONCLUSIONS: This research adds to existing calls for digital platforms for researchers and clinicians to supplement extant modes of communication to streamline research and its dissemination, advance precision medicine, and ultimately improve patient prognosis and care. Findings are applicable to therapeutic web portals more generally, particularly in genomic and translational medicine, and will be of interest to portal end-users, developers, researchers, and policymakers.
Communication , Leukemia, Myeloid, Acute , Adult , Humans , Canada , Patients , Information Dissemination , Leukemia, Myeloid, Acute/therapy
Background: The twenty first century is often defined as the era of Artificial Intelligence (AI), which raises many questions regarding its impact on society. It is already significantly changing many practices in different fields. Research ethics (RE) is no exception. Many challenges, including responsibility, privacy, and transparency, are encountered. Research ethics boards (REB) have been established to ensure that ethical practices are adequately followed during research projects. This scoping review aims to bring out the challenges of AI in research ethics and to investigate if REBs are equipped to evaluate them. Methods: Three electronic databases were selected to collect peer-reviewed articles that fit the inclusion criteria (English or French, published between 2016 and 2021, containing AI, RE, and REB). Two instigators independently reviewed each piece by screening with Covidence and then coding with NVivo. Results: From having a total of 657 articles to review, we were left with a final sample of 28 relevant papers for our scoping review. The selected literature described AI in research ethics (i.e., views on current guidelines, key ethical concept and approaches, key issues of the current state of AI-specific RE guidelines) and REBs regarding AI (i.e., their roles, scope and approaches, key practices and processes, limitations and challenges, stakeholder perceptions). However, the literature often described REBs ethical assessment practices of projects in AI research as lacking knowledge and tools. Conclusion: Ethical reflections are taking a step forward while normative guidelines adaptation to AI's reality is still dawdling. This impacts REBs and most stakeholders involved with AI. Indeed, REBs are not equipped enough to adequately evaluate AI research ethics and require standard guidelines to help them do so.
