Policy Significance Statement
There is an emerging consensus that safe data-sharing environments are crucial to encourage data flows between actors and accelerate innovation. These safe data-sharing environments have sometimes been described as data trusts. In this article, we suggest that the key to prevent and minimize risks for individuals in the context of data sharing is that all parties involved in data sharing follow a common workflow comprising three phases. Focusing on workflows and processes rather than legal forms is the most effective way to ensure that data-related practices can be considered trustworthy.
Introduction
Data protection by design (DPbD) was recently introduced into law via Article 25 of the General Data Protection Regulation (GDPR). The requirement of DPbD builds upon research and applied work conducted in the field since the end of the 1990s (Cavoukian, Reference Cavoukian2009). Article 25(1) places a legal obligation on controllersFootnote 1 to “implement appropriate organisational and technical measures […] designed to implement data-protection principles […] in order to meet the requirements of this Regulation and protect the rights of data subjects.” DPbD therefore plays a key role in enabling and demonstrating compliance with the GDPR.
In this article, we address the question of how the requirements of DPbD should shape the development of data trusts (this concept is explored in more detail below). We will argue that both technical and organizational requirements are foundational to ensuring trustworthy data sharing. We further insist on the necessity of starting with organizational measures and creating a DPbD process, which are prerequisites to the selection of appropriate technical measures.
In order to strengthen our claim, we also draw on our experience as interdisciplinary members of Data PitchFootnote 2—an open innovation program—to inform our proposed approach. Data Pitch aims to bring together data providers (i.e., corporate and public sector organizations) to share data with successful program applicants (i.e., startups and small and medium enterprises [SMEs]) to reuse for innovation purposes. The project launched in January 2017 and will end in December 2019. It is funded by the European Union’s Horizon 2020 Research and Innovation Programme.Footnote 3
Data Trusts
Data trusts have been conceived as a mechanism to enable the sharing of data across entities where other formats, such as open data or commercial agreements, are not appropriate and make data sharing easier, more scalable (Hall and Pesenti, Reference Hall and Pesenti2017), and mutually beneficial for members (Lawrence, Reference Lawrence2016). Although the form and purposes of data trusts are currently a topic of much discussion (e.g., Alsaad et al., Reference Alsaad, O’Hara and Carr2019; Hardinges, Reference Hardinges2018; O’Hara, Reference O’Hara2019; Wylie and McDonald, Reference Wylie and McDonald2018), a broadly accepted definition has not yet emerged. This is in part because data trusts may be of benefit in data-driven innovation, as well as many other situations such as personal or health data management (Lawrence, Reference Lawrence2016) and security, safety, and efficiency, like in the Internet of Food Things project.Footnote 4 The concept of the “data trust” requires further disambiguation from other facilitating structures such as data collaboratives (Susha et al., Reference Susha, Janssen and Verhulst2017). Furthermore, the use of data trusts as an internal data-sharing methodology, as it is established by firms such as Truata,Footnote 5 has created further ambivalence around the term.
By our definition, a data trust is a legal, technical, and organizational structure for enabling the sharing of data (Walker et al., Reference Walker, Simperl, Stalla-Bourdillon and O’Hara2019); they can assist with the exchange of data for a variety of purposes, one of which is to help solve business or societal problems. In that, they differ from data collaboratives, which have the distinct goal to solve societal problems through collaboration between organizations from diverse sectors (Verhulst et al., Reference Verhulst and Sangokoya2015). For data trusts, as well as related structures such as data collaboratives, the design, development, and utilization of robust mechanisms for responsible data sharing are crucial to engender trust and ultimately drive forward data-driven innovation and achieve their organizational goals, regardless whether these are social or economic.
The need for increased data sharing
Data-driven innovation is regarded as a new “growth area” for the global economy (Organisation for Economic Co-operation and Development [OECD], 2015). Given data-driven innovation is contingent upon “the use of data and analytics to improve or foster new products, processes, organisational methods and markets” (OECD, 2015), it is vital that interested parties have lawful access and rights to (re)use vast amounts of robust data where necessary and appropriate. It is therefore unsurprising that a key obstacle to the growth of data-driven innovation is a lack of data sharing (Mehonic, Reference Mehonic2018; Skelton, Reference Skelton2018)—also referred to as the “data-pooling problem” (Mattioli, Reference Mattioli2017). For instance, a deficiency of training datasets has led to the failure of multiple private and public machine learning initiatives (Mehonic, Reference Mehonic2018).
Alongside economic benefits, innovation enabled through greater data sharing also provides many societal and ecological benefits. For instance, data-driven innovation may lead to improved customer service experiences, such as through the extended use of chat-bots, and better diagnosis or more efficient provision of care in health services. When data sharing is used to increase efficiencies in industry, it does not only save costs for businesses, but can also reduce emissions and energy consumption, and thereby improve air quality and public health, or even help tackle climate change. In the public sector, data sharing could help to improve road safety, traffic flows, or maintenance, making for a safer public environment. More direct benefits for citizens are found in new products that improve individual control of personal data, and increase organizations' compliance with the GDPR (Thuermer et al., Reference Thuermer, Walker and Simperl2019).
There are numerous reasons why organizations may be reticent to share data for innovation purposes, including concerns over privacy, data quality, free-riding, competition, reputation, and proprietary issues (Mattioli, Reference Mattioli2017). Data trusts are proposed as one approach that could encourage increased data sharing and reusage within a wider data-driven innovation strategyFootnote 6; especially for personal and anonymized data (Edwards, Reference Edwards2004; Reed and Ng, Reference Reed and Ng2019).
Sharing personal data
The GDPR applies only to information pertaining to an identified or identifiable natural person. In many instances of data sharing, however, as has been shown by Data Pitch, the data that are shared are, or could become personal data. With sensitive sectors such as healthcare and research increasingly utilizing artificial intelligence, this is only likely to increase (Lawrence, Reference Lawrence2016).
Personal data should be processed only where necessary, proportionate, and lawful. As a starting point, organizations should consider whether types of data-sharing activities with lower risk of reidentification to data subjects are most appropriate in the given circumstances, for example, sharing anonymized dataFootnote 7 or fully synthetic dataFootnote 8 rather than personal data. However, the use of anonymized data is not always suitable, in particular, where more granular individual-level data are required (e.g., for some patient-based studies). Furthermore, while the use of fully synthetic data may minimize the risk of reidentification substantially, it may not be an option in all instances as “the truthfulness of the data is lost” (Surendra and Mohan, Reference Surendra and Mohan2017). The quality of synthetic data also varies, as it is dependent on the standards of its underlying generation practices (UK Government Department for Digital, Culture, Media, & Sport, 2018).
In all other cases, organizations should minimize the risk of reidentification as far as possible, for example, by deidentifying personal data through other anonymization techniques that remove and/or mute certain personal-identifying features to protect the privacy of individuals. Such deidentified data may be rendered anonymous or pseudonymous—note that the latter remains personal data and therefore falls under the scope of the GDPR. For instance, differential privacyFootnote 9 is “one of the strongest” (Stalla-Bourdillon, Reference Stalla-Bourdillon2019a) anonymization techniques, and may be employed by an organization to publish aggregate data while retaining individual-level data internally.
Once again, while deidentified personal data may preserve privacy, in some cases, it may significantly reduce the utility of data, for example, by decreasing the accuracy of linkability across datasets. The words of guidance issued by the UK Government Department for Digital, Culture, Media, and Sport (2018) make clear that: “[i]t is important to remember that pseudonymising or anonymising data does not make it automatically appropriate to use. It is possible to make incorrect inferences and develop potentially intrusive or damaging policies based on less identifiable data.” It is therefore essential that organizations strike the correct balance between preserving the privacy of data subjects while also maintaining a sufficient level of data utility—there is no one-size-fits-all approach. Organizations need to ensure that robust organizational and technical measures are in place, which ultimately remain suited to the specific context and purpose of the processing activity in question.
Given the broad definition of personal data, it is imperative that those designing, developing, and utilizing data trusts remain compliant with the GDPR. Due to the key role of DPbD in enabling and demonstrating compliance with the GDPR, it is vital that we further explore how the requirement of DPbD does or should impact upon the construction of data trusts. As O’Hara (Reference O’Hara2019) argues, the purpose of data trusts is to “support trustworthy data processing,” which is achieved by applying constraints that go beyond the law. This requires determining what the law actually mandates and adding to its prescription.
Data Protection by Design
Despite the concept of privacy-by-design being well established in principle, its technical implementation has been rather limited thus far (Hansen, Reference Hansen, Lehmann, Whitehouse, Fischer-Hübner, Fritsch and Raab2016; Tsormpatzoudi et al., Reference Tsormpatzoudi, Berendt, Coudert, Berendt, Engel, Ikonomou, Le Métayer and Schiffner2016). Given Article 25 of the GDPR now directly places a legal obligation on controllers to practice DPbD, there is a real incentive for its widespread implementation. Especially, as pursuant to Article 83(4), any infringements of Article 25 may result in “administrative fines up to 10 000 000 EUR, or in the case of an undertaking, up to 2 % of the total worldwide annual turnover of the preceding financial year, whichever is higher.”
Organizational as well as technical measures
It still remains difficult to find practical DPbD guidance that provides extensive coverage of both the organizational and technical dimensions mandated by Article 25. When DPbD is presented and explained, the focus is often set on its technological dimension (Wiese Schartum, Reference Wiese Schartum2016)—the engineering of data protection principles through design strategies and privacy enhancing techniques (Danezis et al., Reference Danezis, Domingo-Ferrer, Hansen, Hoepman, Le Métayer, Tirtea and Schiffner2015; Deng et al., Reference Deng, Wuyts, Scandariato, Preneel and Joosen2011). Less emphasized is that the requirement also has a vital organizational dimension—that is, Article 25(1) places a legal obligation on controllers to “implement appropriate organisational and technical measures […] to protect the rights of data subjects.” For instance, organizational measures may refer to the adoption of particular procedures and the selection of particular individuals to decide and action various aspects of data processing, including the type of privacy-enhancing technologies (PETs) to be employed across the data sharing and reusage lifecycle (The Royal Society, 2019).
Seven core data-protection principles
This organizational dimension of DPbD implies a particular workflow, that is, a series of accountable decisions and actions taken by responsible individuals with appropriate expertise prior to the commencement of the data processing activities under consideration. Note that an organization may also choose to automate some of these decisions for reasons of scalability; in that case, the accountable decisions by individuals concern the design of the automation.
The main nodes of this workflow echo the seven core data-protection principles at the heart of the GDPR and directly referred to by Article 25(1): (a) “lawfulness, fairness, and transparency”; (b) “purpose limitation”; (c) “data minimization”; (d) “accuracy”; (e) “storage limitation”; (f) “integrity and confidentiality”; and (g) “accountability.” These data protection principles are outlined in GDPR Article 5 and impose high-level restrictions upon how personal data should be collected and used, how data quality should be ensured and maintained, and how personal data should be protected. These principles are particularly important when data are not only processed internally, but also shared between organizations.
DPbD workflow
Essentially, before any processing starts, the data controller should put in place technical and organizational measures in order to facilitate compliance with the data protection principles as listed in Article 5. Article 25 thus refers to Article 5. The basic structure for a DPbD workflow—comprising eight nodes I–VIII—can be derived from Article 5 of the GDPR as follows:
I. Define your purpose for sharing data in this instance. (See Article 5(1)(b)—“purpose limitation.”)
II. Identify your legal basis for sharing data in this instance. (See Article 5(1)(b)—“purpose limitation.”)
III. Determine which data are necessary for your specific purpose. Ensure that you reduce: (a) any nonessential processing activities and (b) the amount of data required—for example, mask or hide direct identifiers that are not required for processing in this instance. If you can anonymize data, just do it! (See Article 5(1)(c)—“data minimization.”)
IV. Set a data retention period in relation to the purpose. (See Article 5(1)(e)—“storage limitation.”)
V. Ensure the data to be shared are accurate. (See Article 5(1)(d)—“accuracy.”)
VI. Verify that the processing is fair. (See Article 5(1)(a)—“lawfulness, fairness, and transparency.”)
VII. Ensure the data are not altered or disclosed without permission—for example, define who is eligible to access data—and the processing is confidential. (See Article 5(1)(f)—“integrity and confidentiality.”)
VIII. Ensure the processing is transparent and monitored, for example, by logging activities so that you can know what is happening with the data (and ultimately demonstrate compliance). Best practice: assess risk before initiating processing. (See Article 5(1)(a)—“lawfulness, fairness, and transparency” and Article 5(2)—“accountability.”)
If data trusts are the mechanism through which data sharing will be enabled in the future, it is therefore clear that they should embed a DPbD workflow, and thereby be underpinned by organizational and technical measures as defined by GDPR Article 25.
Two lessons learnt from Data Pitch
After familiarization with the DPbD workflow in principle, the next step toward trustworthy data sharing is determining how to carry out this DPbD workflow in practice. From our experience with Data Pitch, we raise two key organizational lessons learnt for successful implementation of a DPbD workflow.
Strong engagement across business functions for responsible data sharing and reusage
Responsible data sharing can be viewed as a chain of decisions and actions.Footnote 10 For instance, a company may consider: why it may wish to share data; what kind of entity might be eligible to access the data; what the purpose of data sharing is; what authority it has to share the data; and how it might ensure that the data sharing is compliant. It is extremely unlikely these decisions and actions will be taken by one person alone. Such decision-making needs strong engagement across business functions—from security experts and data scientists to data protection officers and business strategists.Footnote 11 Senior-level support is crucial to overcome ambiguities in the decision-making process.
An agreed process for accountable decision-making
It is vital that there is a process in place where organizational and technical measures are selected to uphold the seven core data-protection principles across the lifecycle of the data processing activity (e.g., over the course of an open innovation program). These organizational and technical measures must be appropriate, that is, well-suited to the specific context and purpose of the data processing activity in question.
Embedding a DPbD Approach Within Data Trusts
Therefore, we argue that the effective entrenchment of DPbD within the construction of data trusts requires (at least)
1. Cognizance of the minimum legal requirements for DPbD—including both its organizational and technical dimensions—as mandated by Article 25 together with its accompanying DPbD workflow located in Article 5.
2. An organizational DPbD process that addresses (at minimum) the legal requirements for DPbD across the entire data trust lifecycle (i.e., from initial plans for creating a data trust to a data trust in operation).
3. Strong, cross-functional business engagement that brings the required expertise to successfully shape, execute, and appraise the DPbD process.
Given that we have already examined both points (1) and (3), we will now turn our attention to what an organizational DPbD process for data trusts is likely to involve. Note that we are only able to signpost some key aspects of a DPbD process to act as a point of reference for data trusts—there is no one-size-fits all approach. A DPbD process must always take into account the specific context and purpose of the data sharing and reusage activities in question.
Scenario
A few organizations are interested in working together to form a new data trust. This data trust would be centered around the creation of a data pool so as to improve their current levels of innovation activities. This data pool would involve each organization sharing their data with authorized members of the data pool, that is, the other organizations and (potentially) third parties. A significant amount of these datasets are likely to be personal or anonymized.
Three-layer approach
As there is no agreed configuration for data trusts, we represent data trusts through three core layers that feature in many data-sharing ecosystems. These three core layers comprise: (a) the data layer—where interested parties make plans to create a data pool; (b) the access layer—where pooled data are made discoverable through a data trust; and (c) the process layer—where pooled data are approved for (re-)usage via the data trust. Note that data may be stored centrally (e.g., all datasets will be held by the data trust) or disparately (e.g., individual datasets will be held by different parties).
The data layer: preparation of data sources
DPbD should be embedded into the plans for the new data trust through the following process:
1. Ensure that all potential members are aware of the legal requirements for DPbD (in particular Article 25 and Article 5)—and the overarching DPbD process for the data trust. Recognize any gaps in knowledge—and provide further training and guidance where necessary.
2. Identify the appropriate persons across all organizations that have the authority and required expertise to decide and action on the pooled data.
3. Provide clear guidelines for reviewing data in the planned data pool, including guidance on: how to assess whether data can be understood as personal data and high risk processing.
4. Apply standardized procedures for the removal of unnecessary personal data. The data minimization principle should directly impact the way datasets are redacted and presented. For instance, direct identifiers should be stripped away as often and as early as possible to minimize the personal data contained in datasets.
The access layer: discovery of pooled data
The datasets within the planned data pool should then be made discoverable to authorized parties through metadata. DPbD should be embedded into the access layer of the new data trust through the following process:
5. Define who is eligible to access the pooled data, and place limitations on who accesses the data, and why. These boundaries are defined around the purpose of the data trust itself, but also include a clear distinction between the raw data and metadata.
6. Provide standardized access through centralized technical solutions, underpinned by monitoring and auditing processes, or provide governance processes to manage peer-to-peer direct sharing that enable auditing.
The process layer: approval of pooled data (re)usage
The (re)usage of datasets within the data pool should be managed by the data trust, which should be in the position to make informed decisions about whether (or not) to permit data sharing with interested parties. DPbD should be embedded into the process layer of the new data trust through the following process:
7. Control data usage through standardized risk assessments. Once the processing purpose and data sources are confirmed, there should be an assessment of the intended versus allowed use of the data, to guarantee in particular the lawfulness and fairness of processing and ultimately the impact upon the rights and freedoms of data subjects. Such an assessment should be done in context of the intended use, and therefore renewed each time a new purpose is suggested. Once again, risk assessment is the key for accountability. Importantly, risk assessment should be iterative—it should start as early as the pooling phase and be reviewed at the inception of the reusage phase.
8. Ensure that data are tailored to queries. Queries that are interested in aggregates should only be responded to with aggregate data. Where raw data are required, this should be limited to the necessary attributes. Traditional techniques based on extract, transform, load should be reconsidered as they tend to create unnecessary movements of data. The potential for PETs, such as differential privacy, should be fully explored at this stage.Footnote 12
Examples from the Data Pitch program
Guidance
Data Pitch provided guidance on the key legal and privacy aspects of data sharing and reusage of (closed) data for a variety of purposes that can be understood by nonlegal specialists through their key resources: The Legal and Privacy Toolkit (Reference Stalla-Bourdillon and Knight2017, Reference Stalla-Bourdillon and Carmichael2018, Reference Stalla-Bourdillon and Carmichael2019). Privacy and data protection is a key focus for the Legal and Privacy Toolkit, including (a) strategy for pseudonymization and anonymization; (b) guidance on the data spectrum; (c) high-risk processing; and (d) data flow mapping as one method which organizations sharing and/or reusing data can use, to support and demonstrate legal compliance with the GDPR and other applicable laws.
Contracts and oversight
All organizations formally taking part in the Data Pitch program signed a bilateral, asynchronous contract. The Data Pitch consortium supported all the organizations to interpret and instill best practices throughout their involvement. The consortium required data providers and SMEs to provide information about the data they intended to share and/or reuse as part of the program via a Data Provider Questionnaire or Self-Sourced Data Record, and made risk-minimizing suggestions. For instance, where data providers proposed to supply data that had been subject to pseudonymization processes ahead of reuse by the participating SMEs, the Data Pitch consortium could oversee and recommend the implementation of best practice safeguards on a case-by-case basis.
Data ethics
Compliance with data ethics is complementary to the Legal and Privacy Toolkit, for example, it was obligatory for SMEs to sign an Ethics Statement in order to participate in the program.
Training
Training related to the Legal and Privacy Toolkit was provided to participating SMEs via workshops and webinar in order to further promote legal and ethical awareness. The provision of more interactive forms of dissemination was also important for improved engagement, such as group tasks based on data sharing and reusage scenarios and interactive legal decision-trees.
Data access
Data Pitch provided access to metadata through a dedicated platform that enabled applicants to explore the available datasets without exposing the actual data. Once contracts were signed, a direct exchange of data between the data holders and participants took place. In the majority of cases, the data were shared to the SME’s infrastructure or to the commercial cloud (paid for by the SME); in a smaller number of cases, the data remained in the provider’s infrastructure or was accessed on the commercial cloud paid for by the provider.Footnote 13
Data protection impact assessments
Data Pitch required some data users to evaluate their use of the data through a data protection impact assessment where necessary. This ensured that the purpose of data use was sufficiently reflected upon, and any risks to data subjects were addressed before processing commenced.
Conclusion
Data trusts, as legal, technical, and organizational structures to enable the sharing of data, are conceived as an important tool to engender trust as part of a wider response to data sharing barriers that may impede data-driven innovation. Given the likelihood that the data to be shared may be personal data or could become personal data (e.g., through purpose or result of use, reidentification), it is vital that data trusts embed DPbD through the implementation of appropriate organizational and technical measures that uphold the seven core data-protection principles at the heart of the GDPR. The DPbD workflow defined by Article 5 is therefore key to the effective implementation of the appropriate organizational and technical safeguards that lead to trustworthy data sharing.
There is an opportunity for data trusts to lead the way with the practical implementation of DPbD by giving equal attention to its organizational and technical dimensions. Strong engagement across business functions will be critical for the creation and adoption of well-considered processes that embed DPbD.
Acknowledgment.
An earlier version of this article was made available for the Data for Policy conference 2019.Footnote 14
Funding Statement.
Data Pitch is funded by the European Union’s Horizon 2020 Research and Innovation Programme under the Grant Agreement 732506.
Competing Interests.
The authors declare no competing interests exist.
Authorship Contributions.
S.S.-B.: conceptualization, writing—original draft, writing—review and editing; G.T., J.W.: investigation, writing—review and editing; L.C.: writing—original draft, writing—review and editing; E.S.: writing—review and editing, funding acquisition.
Data Availability Statement.
Details about the Data Pitch program used in the case study are available at https://datapitch.eu/.
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