Navigating the Digital Health Ethics Landscape: A framework for understanding ethical principles for digital healthExecutive summary We have created an interactive version of the executive summary that you can use to click-through to the sections of the guidelines you would like to read more about: Introduction Within a couple of decades, digitally-enabled practices have become prolific across our work and lives and are the norm. These transformations have largely been driven and controlled by commercial organisations, however there is increased interest and participation from health and medical research charities which see the potential benefit to patients. Charities hold a unique position of trust, and therefore have a mandate to embody best practice in the use of digital technologies and any interactions these may have with people’s data. To enable this, the AMRC commissioned DataKind UK to develop an ethics framework for members to reference when developing and deploying digital products and services. The result being this paper, as well as a guide for enacting this framework when collaborating with industry partners through a series of questions: ‘Navigating the Digital Health Ethics Landscape: Questions for charities to ask digital technology company partners’. There are a wealth of existing ethical principles that are to some extent applicable, but not specific to, the digital health work of charities. Hence, these various frameworks were collated and relevant aspects from across all of them were developed into this single framework. Understanding the context The first step in the process was to characterise the environment in which health and medical research charities work when undertaking digital health research. This can be represented as the sectors they might interact with: Nine core principles Existing ethical principles in each of these areas were identified and parsed to tease out consistencies across them that are relevant to charities developing health technologies. Nine key concepts materialised: Beneficence Do work that is to the benefit, not detriment of people. The benefits of the work should outweigh the potential risks. Non-maleficence Avoid harm. This is closely related to beneficence. Autonomy Enable people to make choices. This requires people to have sufficient knowledge and understanding to decide. Justice The benefits and risks should be distributed fairly. Explicability Transparency around how and why digital health solutions generate the outcomes they do. Particularly relevant to AI, for which the assumptions, working and outputs should be explicable. Sustainability (financial and operational) Minimise risk of developing digital products and services which users become dependent on but cannot be sustained. Open research Commitment to make research freely open and accessible for reuse. Community mindedness Willingness to collaborate within the digital health community, such as sharing platforms applicable across medical conditions. Proportionality Being proportionate to the relevant risk and potential benefit. Home The need How it was developed Using the framework Glossary Appendices Appendix B: Interviews and workshop participants Interviewees Charity Michele Acton, Chief Executive, Fight for Sight Kay Boycott, Chief Executive, Asthma UK Rebecca Cosgriff, Director Quality & Improvement, Cystic Fibrosis Trust Julie Dodd, Director of Digital Transformation and Communication, Parkinson’s UK David Ramsden, Chief Executive, Cystic Fibrosis Trust Jon Spiers, Chief Executive, Autistica Danil Mikhailov, Head of Data & Innovation, Wellcome Trust Ethics expert stakeholders Imogen Block, Data Ethics Team, Department for Digital, Culture, Media and Sport Jennifer Boon, Senior Policy Advisor, Centre for Data Ethics and Innovation Josh Cowls, Research Associate in Data Ethics, The Alan Turing Institute Tom Denwood, Executive Director Data, Insights and Statistics (AI), NHS Digital Anna Hill, Data Ethics Team, Department for Digital, Culture, Media and Sport Tom King, Secretary, Royal Statistical Society’s Data Ethics Special Interest Group Reema Patel, Programme Manager, Ada Lovelace Institute Workshop participants Charity Hassan Abu-Bakir, Policy Manager, Fight for Sight Kay Boycott, Chief Executive, Asthma UK Rebecca Cosgriff, Director Quality & Improvement, Cystic Fibrosis Trust Said Dajani, Head of Digital, Diabetes UK Julie Dodd, Director of Digital Transformation and Communication, Parkinson’s UK Dawn Duhaney, Partnerships Manager, Wellcome Trust Lorcan Kenny, Discover Lead, Autistica Stephanie Parker, Deputy Director of Digital and Content, Stroke Association AMRC Lotte Coppieters, Digital Project Manager Carol Bewick, Head of Member Engagement and Communities Aisling Burnand, Chief Executive Manage Cookie Preferences