Human-centric control of health data
Human-centric control puts the individual at the centre of decisions about access to and reuse of their health data. The MyData approach sets out principles for turning data rights into control that people can exercise.
The MyData approach
MyData Global is a non-profit association advocating a human-centric approach to personal data and greater individual self-determination. MyData aims for a fair, sustainable and prosperous digital society in which sharing personal data rests on trust and balanced relationships between individuals and organisations. The European Commission’s 2020 European Strategy for Data endorsed it as a promising initiative for human-centricity.
Rights to access and control health data need tools, skills and opportunities through which people can exercise them. MyData’s ideal combines efficient provider access to longitudinal records with individuals’ immediate access to and control of their data. Framing health data exclusively in economic terms risks reducing people to market participants, so human agency and citizens’ roles and rights should remain part of the discussion.
MyData proposes three shifts:
- From formal to actionable rights.
- From data protection to data empowerment.
- From closed to open ecosystems.
Its six principles are:
- Human-centric control of personal data.
- The individual as the point of integration.
- Individual empowerment.
- Portability: access and reuse.
- Transparency and accountability.
- Interoperability.
Making the individual the central contact point for accessing and controlling their data is MyData’s proposed answer to a fragmented health-data landscape. MyData proponents argue that this simplifies consent, enables human-centric governance and creates opportunities for new services. They propose transparency and accountability as ways for organisations to prepare for intended and unintended consequences of data use, build trust and reduce risk. Interoperability enables sharing between organisations and individuals, while portability enables individuals to access and use their own data; these principles can help organisations comply with legislation and serve their customers.
Applications to health data
Reusing diabetes-device data
Insulin pumps, blood glucose meters and continuous glucose monitors produce data that patients may want to use beyond the purposes supported by manufacturers’ software. MyData connects this reuse with three principles: individuals as the point of integration, autonomous agents in reuse, and holders of the right to port data to their own devices and services.
The patient-initiated Nightscout Project provides open-source software for continuous-glucose-monitor data portability, caretaker access and redisplay on other devices. Patients also developed open-source tools for automated insulin delivery personalised from monitor data. Tidepool’s open-source software integrates data across devices, and patients have donated data to research through its centralised database and similar patient-led projects.
Controlling sensitive information
Control of health data addresses its sensitivity, unequal patient-provider power and providers’ historical control of the data. People given control over their data are more willing to share health information. Particularly sensitive information, including mental-health and substance-use-disorder data, requires decisions about what may be shared, with whom, for what purpose and for how long. Understanding what matters to individuals about privacy is essential.
Lengthy legal consent terms and privacy policies can fail to engage people in informed decisions. Without meaningful choices, people may refuse consent or avoid medical services for fear of discrimination or abuse of power. Appropriate provider access depends on context: access at a routine physician visit can differ from access during substance-use-disorder treatment. Platforms can incorporate privacy preferences into data flows by context, while personal data stores provide a central point from which individuals manage their data.
Making data reusable across services
A unified data language would let individuals request enriched data in a standard format for their own use from trusted brokers such as governments, insurers and healthcare providers. MyData links interoperability with this ability to reuse data across services and organisations.
Making data use traceable
Health data often involves several parties, making governance difficult to determine and impeding use. Consent agreements can leave grey areas in which data may be used beyond their scope. MyData proponents advocate transparency and accountability to rebuild trust between healthcare systems, data vendors and individuals. Traceable health-information services provide transparent management through which individuals can access and control their data. Digital watermarking, including its open-source implementation in Semantic Containers, can support transparency and accountability when data is copied and transferred. Individuals can prove lawful access to the data through these transparency mechanisms.
Organisations, policy and communication
MyData proponents argue that human-centric approaches reduce organisations’ regulatory burden and risk, provide new data sources and build equity with individuals. They see tools that make the individual the point of integration as starting to open large health-data repositories and monopolies. Access and control should be pursued for the benefits of sharing, portability and use, as well as to fulfil legal rights. Adopting MyData principles in policy would support individuals as the point of integration in a shared health-data space.
Medical communicators can convey good data practices with confidence and sensitivity through their work gathering and disseminating trustworthy health information. Public-facing materials require an understanding of individuals’ expectations, opportunities and risks. Medical writers should recognise individuals’ data rights and can use MyData principles as a resource for human-centric communication. Realising health data’s predictive, preventive, personalised and participatory potential requires deliberate policy action, dissemination of good data practices by medical writers and new organisational data-management models, pursued fairly, transparently and sustainably.