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?