Contexts of usage – Applying the insights

The global dialogue on personal data had extensive conversations with practitioners from an array of communities throughout the year. The following profiles outline the challenges, opportunities and immediate next steps for activating real-world learning environments in three contexts: health and wellness, international development, humanitarian aid and human rights.

Opportunities and potential value

The global health and wellness community is using personal data to improve care outcomes and drive efficiencies along a number of fronts. Managed care providers are combining behavioural data with traditional medical records to suggest treatment and prevention regimens. In the precision and personalised medicine space, researchers are combining large genomic data sets to develop advanced medicines. Digital health uses information technology to promote collaboration and personalization in healthcare, while reducing costs, by combining many applications of data and technology, including mHealth, eHealth, connected health, big data, wearable computing and gamification.

However, much of this data remains fragmented across industries and organizations. Ownership, interoperability and transfer issues remain unresolved. Much of this data – for example, location data from a mobile phone – is viewed by individuals as highly sensitive. Further, individuals may fear that greater access to personal data could adversely affect their health premiums or treatment options.

Opportunities for building trust

Transparency 

• Determination of a coarse-grained set of uses that are understandable to individuals
• Assessment of the risks to individuals created when different data types are applied to each use, as well as mitigating actions that can be taken
• Based on sensitivity and risk assessments, determination of what levels of preference and control individuals should possess

Accountability

• Establishment of common codes of conduct within communities of care providers and research institutions
• Procedures for transferring data to researchers or care providers outside established trust boundaries that evaluate the appropriateness of a transfer based on individual preference and risk potential
• Revision of risk management practices that integrate data risk assessments with other clinical and research risk control procedures

Empowerment

• Establish clear and easy-to-understand preference types that individuals can express when entering a care environment, as well as an articulation of what data uses will not be subject to their preferences, and why
• Communication to individuals of the specific risks that have been taken into account, and the measures that are in place to mitigate these outcomes
• Enabling online patient communities to interact and share treatment experiences to support one another 

Stakeholder considerations

Policy-makers

• Can new uses be covered by existing privacy regulations (e.g. HIPPA)? Can existing health-focused policies cover new data types?
• How can policies be coordinated globally, particularly in the context of multi-national research efforts?
• How can accountability be determined across trust boundaries and geographies?
• How can policies evolve in concert with technological progress on accountability and individual empowerment tools (e.g. recommender systems that adaptively interpret preferences)?

Industry

• How can data taxonomies be constructed that reflect the complexity of clinical and research environments while also facilitating clear communication and seamless interoperability?
• How can trust networks be established in a highly fragmented industry, and encompass both clinical and research functions?

Next steps

• Engagement of individuals through “patient empowerment” tools such as patient portals to strengthen engagement and transparency
• Further articulation of the impact of data use on individuals, moving beyond traditional medical privacy guidelines to include individuals’ perceived risks
• Development of interoperable codes of conduct that can be deployed to support trust networks between the health space and other industries

Opportunities and potential value

The increase in available public data sets provides international development and humanitarian organizations with access to effective baseline data and helps drive innovative solutions at the local level and provides citizens with more ways to be involved in their government. There is a growing consensus that data about people’s actions, when coupled with advanced analytical tools and used responsibly, can contribute to social progress. Additionally, the growing trend towards open civic data provides transparency in an unprecedented manner. 

Large personal data sets can provide a fine-grained representation of reality that can help development organizations understand the impact and efficacy of programmes as well as emerging needs. For example, using mobile phone data to analyse the spread of a malaria outbreak or using communications records as a proxy for levels of sub-regional development.

Opportunities for building trust

Transparency

• Articulation of the core data types that are used in a development context (e.g. mobile location, gross financial transactions, traffic mapping) to coordinate and communicate with data holders about specific needs and the safeguards for sharing data in a trusted manner
• Identification of the potential risk factors that are specific to the development context, such as corruption, ethnic tensions and displacement, and how they can be addressed to achieve social benefits
• Raising awareness to the general public on the impact and benefits of using data in innovative ways that fundamentally protect the rights and privacy of individuals 

Accountability

• Coordination between data holders (e.g. mobile operators) and international development agencies on standard codes of conduct for data use that transcend local laws in jurisdictions where data protection regulation is lacking
• Development of trust marks and reputation indicators so that individuals can strengthen their trust with entities that use data about them
• Promote awareness of leading privacy and data protection best practices in the arena of international development
• Establishment of trust networks among multiple development agencies and the private sector to facilitate data exchange but also to ensure that risk management is held to the highest standard

Empowerment

• Provide individuals with applications and services that deliver genuine utility at the local level
• Tap into the “bottom up” flow of data to enrich applications which are “top down” oriented in their use of data
• Advocate for access and ethical use of real-time data sources, advanced and affordable analytics, and localized data science expertise

Stakeholder considerations

Policy-makers

• Explore how a contextual and usage-based approach in the use of personal data can be applied applied for issues related to national security
• Work to find new ways and approaches to gain the support of individuals for broad social impacts (education, logistics, weather information, market information services)
• Strengthen the engagement of national statistics experts who can leverage the insights of big data to build more adaptive and evidence-based policies

Industry 

• Identify the incentive structures for industry to create APIs, which access select sets of data that address defined challenges
• Identify key business risks and the measurements that would help to reduce them so that capital could flow more effectively
• Identify data partnership opportunities where the combined sharing of data could unlock new market segments (logistics, alerting systems, reputation systems, etc.) either with other private sector actors, donors, governments or civil society actors

Next steps

• Establish linkages between core actors in the development space (including civil society, NGOs, international organizations, governments and the private sector) to engage in a structured dialogue on data usage in a development context
• Articulate the ethical and social impacts of data usage in development
• Identify target projects where collaborative approaches to managing risks can be tested, and the value of data in development demonstrated

Opportunities and potential value

Leaders within the human rights community are working to better understand the nature in which human rights, civil rights and property rights are transitioning into the digital domain. Among the issues under consideration are the role of data systems in supporting human rights work, the role of providers of data system services in settings where state and individual interests are adverse, and the nature of emerging digital-related rights as potential sources of human rights and other related topics. 

One applied space where personal data has been deployed for humanitarian activities is in disaster preparedness and response. For example, mobile location data has been used to plan evacuations and to locate populations for targeted relief in natural disaster such as hurricanes and tsunamis.

Opportunities for building trust

Transparency

• Articulation of humanitarian-specific context elements (e.g. crisis levels, immediate life-threatening situations) and the impact that these have on expressed preferences and controls for particular data types and uses
• Construction of a framework for balancing the risk factors that individuals can be exposed to through personal data use with the risks faced during a humanitarian crisis
• Mapping of dynamic permissions levels so that data access levels correspond with the stages of a humanitarian intervention (e.g. access levels are highest in the immediate aftermath of a disaster, but decline as the situation becomes less fluid)

Accountability

• Creating frameworks for accountability that rebalance risk and responsibility for disaster-specific contexts
• Establishment of codes of conduct that can be adopted by major multinational players (e.g. UNHCR, IFRC) as well as institutional capabilities to support those codes that are structured to flexibly incorporate smaller human rights responders
• Risk-management procedures that are adaptive to humanitarian-specific risks, and include post-crisis closures to ensure that data leveraged for humanitarian purposes is not inappropriately transferred or used post-crisis 

Empowerment

• Clear communication of data use and benefits during crisis situations, as well as post-crisis closure tools and accountability mechanisms

Stakeholder considerations

Policy-makers

• What policy frameworks can increase the coordination and interoperability of multiple private and public sector actors across geographies, and what are the implications for privacy?
• Should involvement in humanitarian initiatives by industry and individuals be voluntary or mandatory?
• How can evolving understanding of individuals’ perceptions of context facilitate more rapid decision-making in humanitarian and disaster situations?

Industry

• How can participation in humanitarian initiatives be made systematic rather than ad hoc?
• Can disaster programmes be integrated with existing business continuity programmes?
• What liabilities are industry players exposed to for inappropriate data use during or after humanitarian circumstances, and how can these be managed?

Next steps

• Identification of core data types and uses to serve as a foundational taxonomy
• Exploration of the potential impacts of these uses on individuals
• Integration of taxonomies and impact assessments with existing disaster preparedness and response programs