Submissions from a business perspective seek to explore how typically commercial businesses and their operational models can try and engage in a fair and sustainable personal data economy.

Submissions taking a business perspective consider how businesses can demonstrate that their commercial models support their consumers ethically and overcome the convenience apathy, whilst showcasing that ethical business is better business. Discussions around the conflicts of interest, whether financial incentivisation works, how to ensure individual empowerment over data usage is implemented and maintained, are encouraged.

Concepts to explore:

• Identify and share existing or tentative business models embedding MyData values and principles.
  • Examples of “MyData compliant” business models already tested: description, development stage, results.
  • Potential, out-of-the-box concepts for co-development.
• Exploration of how concrete ways in which businesses can incorporate human empowerment with data into their core.
• Models showing why investment in privacy and respectful treatment of personal data is inevitable, necessary, and undeniably beneficial for prospering businesses.
• Who is paying for personal data? App developers accessing data, Individuals for data management facilities, retailers accessing data, data brokers?
• Who might, could, or should finance developments in human centric personal data? Can we identify potential conflicts of interests depending on the type of financing entity?
• How to disrupt the prevailing AdTech-driven personal data economy? Or how to drive it to change into an industry respectful of people and their data?
• Are individual financial incentives required to attract widespread public interest for MyData values and principles?

• How can regulation and business better work together to ensure the needs and rights of the individual are met whilst maintaining corporate goals? Can we showcase practical examples and benefits of solutions?
• We need to consider the flows of value, money and data in a social context.
  • In the current world order, the benefits and profits are mismatched and this erodes trust. How can we solve the mismatch and increase trust?
  • Currently, value is exchanged for data in a non-transparent manner (free-to-use services). What are the viable, transparent, trust-enabling business models for one-to-many and many-to-one transactions?
• Business innovation vs technology innovation: how can each fuel the other?

The legal perspective of MyData, and personal data in general approaches this complex set of issues from the perspective of how different forms of legislation and regulation can provide ingredients for solutions that enable the shift to a fair and sustainable digital world. Some examples and ideas are outlined below.

Concepts to explore:

Legislation:

• Can MyData issues be best solved and regulated on the international or the local level?
• What are the territorial differences in perspective? How can these align to help individuals and businesses understand what they can expect across the globe?
• What are the “best and worst” legal frameworks for dealing with MyData?
• How much should the personal data ecosystem be self-regulated (such as by codes of conduct) or based on social norms?
• Do we need to adopt new data protection laws or are existing frameworks (such as human rights, competition, IP) enough for the protection of the personal data?
• Personal data as an asset or a human right? What does this really mean? What are the implications?

Enforcement:

• What is the function of the data subjects’ requests pursuant to the GDPR? Do they fulfil their purpose or are they used in bad faith?
• Do data protection authorities have bad or good image? Should they help or punish? Should business have initiative to share more information (e.g. on breaches) with them?
• Does international or local level protection prove a better safeguard from arbitrage?
• Main points of conflict and examples of good cooperation between several parties participating in one personal data processing (e.g. joint controllers, controllers and processors). What is the best way to establish and manage this legal relationship?
• Who should be more motivated to enforce MyData rights: individuals, businesses or government?

The tech perspective on MyData emphasises the role of technology in addressing challenges related to personal data and human-centric digital services. Some may argue that the rapid advances in technology witnessed over the past several decades have outpaced developments in other areas, such as law, that aim to protect privacy. The MyData Community aims to showcase and promote how technology can also be wielded towards the benefit of individuals and especially to protect inherent data subject rights.

While the rate of advancement of technology is the key factor that is driving the challenges and concerns around the collection and use of personal data, how it helps to solve the challenges is foggy. We do know that the ultimate system(s) will need adaptability and flexibility to meet all the contextual requirements, and technology and design will be key components of any solution(s). How these pieces come together is still emerging.

What we do know is that sharing of knowledge, experiences, results of experiments (successes and failures) is key to developing a solution for a complex system.

Concepts to explore:

• What are the the technological systems and patterns that will ensure the rights of individuals can be managed, and what is their current status of development and adoption?
• In order to ensure data portability and reuse, what kinds of interoperability, portability, semantics, governance, and standards solutions are still needed and how can they collaboratively be developed?
• To what extent can technology “bake in” values about personal data, and what unintended threats may exist with regards to for example privacy-preserving technologies?
• How are attitudes shifting among tech leaders with respect to personal data, and what impact will this have on existing technologies and platforms?

As individuals and societies, the stakes around personal data are high. The societal perspective of MyData seeks to tackle these stakes head on, exploring in both critical and creative ways how individuals, communities and societies can use, share and benefit from personal data to support a fair and sustainable data economy for all.

Concepts to explore

Whose responsibility is this anyway?

• As individuals and societies, what do we know about how personal data is used, and what else do we need to know? Whose responsibility is it to answer these questions and who is doing this well?
• What are the frameworks for thinking about the individual and society around the use of personal data, and how do they help us solve shared problems?
• How do different cultures and economies think about personal data and its impact on individuals and society?
• How can personal data be used to mitigate social prejudices and biases, how can it exacerbate them, or simply entrench a status quo?
• What role can trust and transparency play here?

A better future

• Who are the innovators and visionaries shifting how we use personal data to benefit individuals not just as consumers, but also as citizens, students, employees, pensioners…?
• How can we use personal data for the greater good?
• How can we help to address issues of digital inclusion?

What are your concrete ways of implementing the principles outlined in the MyData Declaration from any perspective?

What can we learn from unsuccessful attempts to build MyData use cases?

• What are the reasons that many of the business models have not been sustainable (yet)?
• How can we create better solutions?

Are there fake MyData use cases and how to identify them?

How can design thinking support data-driven organisations to create solutions for handling personal data ethically?

• Design principles, guidelines and best practices for MyData and data ethics
• Case studies and lessons learned from trying to implement design thinking.

How can MyData principles be turned into human-centred design solutions? What are relevant case studies and what can be learned from them?

What dark patterns are effective and in practice right now, and how can we use their logic for good?

Design tools and patterns as well as methodologies for co-design

AI has seen rapid advancement in the recent years and has emerged as that one technological concept which is used for decision making in almost any application domain. A central idea of AI is data-oriented learning. So, what is the relationship between MyData and AI?

How is personal data being used in decision making by AI? What kinds of issues should we be solving regarding AI bias?

How can MyData and AI be used to improve access to different products and services for different groups and communities?

What role does and should transparency play in the design and implementation of autonomous systems?

What are the most important ethical issues involved in personal data?

What does it mean to think about trust as a moral issue?

Who is showing that the ethical can be profitable?

How can we approach ethical dilemmas across diverse cultural backgrounds?

What is MyData? What does the MyData Declaration say and what does it mean?

How can I as an individual understand what is happening with my data when I interact with digital technology?

Typically an individual will opt for convenience over control, what implications does this have for MyData the movement and solutions that try an empower the individual?

What is the driving force to get businesses, organisations, mass data collectors, profilers to empower individuals with the capabilities to use their data for their own means?

What differences do we see in how regulated clinical data and less regulated wellness data are being managed and shared? Are the differences static, or are they currently changing? How?

When and how should researchers be granted access to health data? What should be the conditions for use and re-use? What role does anonymization and pseudo-anonymization play in granting access to others?

Hot topics and their relevance to particularly health data:

• What is special about consent for health data? What rights are applicable for citizens regardless of consent? What about the rights of other healthcare stakeholders?
• What are the portability and/or interoperability barriers and facilitators for sharing health data? Are they similar or different from cases involving other types of personal data?
• What can self-sovereign identity solutions offer specifically health-related data?

What new and emerging topics on health data do you think are important to bring to the forefront of discussion? Why?

Personal data use for benefit vs privacy: is there a perfect balance? Or is the question how do we empower each person to find the right balance for themselves?

What are the best technical solutions to solve current privacy concerns?

How is privacy conceived in different places and cultures around the globe?

Can I ‘own’ MyData? Is ‘ownership’ useful language or should we talk about rights to access and control?

• Is the most powerful idea that MyData is not ownable by anyone but a shared resource to which I can choose to grant access?
• If MyData is not ownable, then what control do I have over it getting into the ‘wrong hands’ or being used for the ‘wrong things’ or something that I do not agree with?

How do we address organisations who maintain that they ‘own’ the data they have amassed about people?

How is the ownership or shareability governed and rules enforced?

Showcase good MyData policies.

• How is your city, region, country leading the way in adopting good personal data policies?

Show how MyData ties into already heavily pushed policy initiatives like the EU Digital Single Market, Migration and the Stronger Global Actor policies and initiatives.

Share learnings and case studies about influencing policymaking.

• How did you succeed in getting good MyData policies adopted?

What is the relationship between MyData and the real-world me?

What is a digital twin and are they important? How?

What is the relationship between real-world biases regarding certain types of identities and their analogues in the digital world?

What are the best technical solutions currently for managing digital identities? Why?

Is consent broken?

How does consent function as a legal instrument? Is it abused?

Consent as a tool for businesses and business models: is it useful and when is it justified?

What are the alternative solutions for issues currently employing consent?

You’re very welcome to add other relevant keywords to your proposal as well.