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:
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.
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:
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:
Do work that is to the benefit, not detriment of people. The benefits of the work should outweigh the potential risks.
Avoid harm. This is closely related to beneficence.
Enable people to make choices. This requires people to have sufficient knowledge and understanding to decide.
The benefits and risks should be distributed fairly.
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.
Commitment to make research freely open and accessible for reuse.
Willingness to collaborate within the digital health community, such as sharing platforms applicable across medical conditions.
Being proportionate to the relevant risk and potential benefit.
For a PDF version of this report and if you have any questions please contact our Digital Project Manager Lotte.
The framework has been informed by the backgrounds of the writers, literature reviews, and discussions both with health and medical research charities and experts within the digital/data ethics field. It reflects the standards of the current day and should be viewed as guidance on how health and medical research charities can develop and deploy ethics within their work. As such, both this framework and the accompanying piece, ‘Navigating the Digital Health Ethics Landscape: Questions for charities to ask digital technology company partners’, are live documents which should be regularly reviewed and updated.
We reviewed ethical principles and codes across five domains which are relevant for health and medical research charities working on digital health. These are: biomedical research; technology and data; non-profit sector; public health; and partnering within the UK system. By providing a base set of nine ethical principles, charities can discover and discuss potential ethical concerns with any partnership or project. It is important to note that these dependent on the context in which they are applied, these principals may be in direct contradiction of each other, for example individual autonomy may be overridden by the need for wider benefits to society. Depending on the application to real cases, it can be expected that the importance and alignment of principles can change.
Finally, the development of this framework is only the beginning of the journey to enact ethical practices. It will need to be discussed and accepted within charities by the people they work with, volunteers and staff. This requires raising awareness of what your ethical principles are and setting lines of accountability to encourage all stakeholders to make active use of them. When internal agreement and methods for implementation have been established, it is important that these principles are communicated within tech company partnerships. The set of questions to ask tech companies that were developed alongside the principles can act as a guide to assess prospective partners and to set expectations on how work should be delivered.