Navigating the Digital Health Ethics Landscape: A framework for understanding ethical principles for digital health

Executive 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.

Appendix C: Stakeholder interviews guides

Charities

AMRC ethics project: Interview schedule for charity data/digital Leaders

Intro

DataKind UK [discuss who we are & interest in ethics] has been commissioned by the AMRC to support members to navigate the existing landscape of ethical principles which should be considered when developing data and digital solutions.

We aim to consolidate (where possible!) the wide number of principles-highlighting areas of commonality, discrepancy, and areas still to be developed. A second aim of this project is to develop clear questions to aid members in upholding their ethical principles and values when working with commercial and technology partners.

Our intention in speaking with you is to understand the issues you face, or may face when developing data/digital products and services and ensuring your values and principles are incorporated.

We would also like to hear about any work you are undertaking, or have heard about which involves identifying and embedding ethics within data/digital product design and services.

We will be taking notes of this meeting. All case studies explored within this interview will be anonymised within our reporting, unless you agree for your project to be named.

Background

Please describe your role
Could you describe your priorities, and your organisation’s priorities over the next few years in relation to data and digital use and development.

[Probe what projects are being planned/taking place]

Do you/your organisation have a data and digital strategy?

Ethics & your organisation

What does ethical use of data and digital mean to you?
How does the ethical use of data and digital fit within your role/ the org?

Who are the key stakeholders involved in ethical use of data & digital? How are they engaged?

Has there been a time (or do you anticipate a time) where you/your colleagues are working on a project (which involves data and digital) in which concerns about the impact on the data subject and wider society have been identified? Please discuss this project/ potential issue?

Have you developed steps on how you would address this issue? Or

What support do you think is needed to ensure that ethical implications of this project/work are identified and addressed?

Are their guides/ principles that you would recommend that organisations review when developing ethical data and digital products/services?

Have concerns OR hopes been raised by your users around data/digital/AI, either existing or future?

Ethics in the sector

[Prompt] use list of ethical principles identified from stage 1, explain to charities]

What do you consider to be important principles for the sector in general?

Ethics and working with partners/ commercial organisations

Are you generally optimistic or concerned on developing data and digital projects/services with external partners with regards to ensuring your values and principles are upheld?

Why the optimism? Why the concerns?

Do you have an example of a data/digital project that has worked or not worked well in encompassing the values of your organisations?

What lessons/ best practice ideas have you learnt from this?

Have you developed a policy on best practice when working with external partners? Are you able to share this?

Ethics and data/digital use in society

How aware are you/your organisation of the current debates about the ethical implications of using machine learning/AI within social society?

Are you aware of any relevant examples from any field (good or bad) about cases where AI/machine learning has been used? How do you see these being similar to/different from your organisation’s plans?
Is your organisation engaging in the debates of ethical practice in AI?

If so, please discuss how?
If not, please describe your reasons?

What do you consider the role of charities should be within the debates that are taking place?

End

Are there additional organisations/ stakeholders that you would recommend that we speak to?

Thank you for your time. Do you have any questions you wanted to ask us?

Ethics experts

AMRC ethics project: Interview schedule for expert stakeholders

Intro

DataKind UK [discuss who we are & interest in ethics] has been commissioned by the Association of Medical Research Charities (AMRC) to support their members to navigate the existing landscape of ethical principles which they should consider when developing data and digital solutions.

We aim to consolidate (where possible!) the wide number of principles-highlighting areas of commonality, discrepancy, and areas still to be developed. A second aim of this project is to develop clear questions to aid AMRC members in upholding their ethical principles when working with commercial and technology partners.

Our intention in speaking with you is to gage your thoughts on the latest developments in data ethics, especially to those within the health sector; and to explore what you consider would be the key considerations for charities when embarking on data and digital projects.

We will be taking notes of this meeting, and use the conversation to inform our work. If it would be helpful for AMRC members to have a quote/vignette from this conversation, we will seek your permission on whether we can directly attribute you/your organisation within our reporting.

Background

Please describe your role

Could you describe your priorities, and your organisation’s priorities over the next few years
What areas of digital health/data projects do you see as most relevant for your role and your organisation?[Prompt eg AI vs patient forums vs use of slack!]
If not provided in the answers above- How does the ethical use of data and digital fit within your role?
Does your role involve working with charities?

Ethics

What does ethical use of data and digital mean to you?
What are the steps that organisations should take to ensure that they are using data and digital ethically?
What advice do you have for charities when working with commercial organisations in developing ethical digital and data driven products/services?
Are their guides/ principles that you would recommend that organisations review when developing ethical data and digital products/services?

In your opinion are there additional considerations that a charity should take given the potential vulnerable nature of their service group?
Do you think charities have a role within discussions of ethical data and digital use for society in general? If so, what do you consider that to be? How should charities engage with the current debates that are taking place?
Are there additional organisations/ stakeholders that you would recommend that we speak to?
Do you have any examples (anonymised OR publicly available) of ethical issues raised in the context of healthcare and data/digital health?

Thank you for your time. Do you have any questions you wanted to ask us?