Emerging health data platforms: From individual control to collective data governance

Kariotis, Timothy; Ball, Mad Price; Tzovaras, Bastian Greshake; Dennis, Simon; Sahama, Tony; Johnston, Carolyn; Almond, Helen; Borda, Ann

doi:10.1017/dap.2020.14

Cited by 25 publications

(15 citation statements)

References 55 publications

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“… 33 They also get to elect some of the members of the Open Humans Foundation board of directors, enabling them to participate in the broader governance of the platform. 33 , 43 This configuration contributes toward enabling accountability and transparency in the use of data in such a way that participants' data contribution is not used beyond their intention, such as health profiling based on stereotypes for governance and commercial purposes and loss of privacy.…”

Section: Resultsmentioning

confidence: 99%

Citizen science as a data-based practice: A consideration of data justice

Christine¹,

Thinyane²

2021

Patterns

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Summary Citizen science has been motivated by several perspectives, including increased efficiency in data collection and distributed analysis, democratizing knowledge production, making science more responsive to community needs, and improving the representation of marginalized populations in public data. Despite the potential of citizen science to achieve social justice agendas through a data-intensive and data-driven participatory scientific enquiry, scholarship in critical data studies offers several problematizations of data-based practices, highlighting risks of exclusion and inequality. To understand the extent to which citizen science supports and challenges forms of injustice, this study used a “data justice” analytical framework to critically explore the assemblages of citizen science. We examined four citizen science cases with different levels of citizen engagement, intended outcomes, and data systems. The analysis suggests instances of injustice occurring throughout the data processes of the citizen science cases across the dimensions of procedural, instrumental, rights-based, structural, and distributive data justice.

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Section: Resultsmentioning

confidence: 99%

Citizen science as a data-based practice: A consideration of data justice

Christine¹,

Thinyane²

2021

Patterns

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“…There is a trade-off between the scientific desirability of everyone contributing de-identified data, including to avoid bias, 76 77 and the desirability of individual control over data use. 78 As we suggest below, a reasonable balance might be a central system to opt out from identifiable clinical use, identifiable (§251) research use, or de-identified research use of one’s data, and to opt in for participatory research. This would complement efforts to improve people’s access to their own data.…”

Section: Discussionmentioning

confidence: 99%

“…Participants supported a central system for patients to control the uses of their data, and likewise a single NHS mechanism to sign up for active research participation. There is a trade-off between the scientific desirability of everyone contributing de-identified data, including to avoid bias,76 77 and the desirability of individual control over data use 78. As we suggest below, a reasonable balance might be a central system to opt out from identifiable clinical use, identifiable (§251) research use, or de-identified research use of one’s data, and to opt in for participatory research.…”

Section: Discussionmentioning

confidence: 99%

Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK

et al. 2022

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ObjectivesUK National Health Service/Health and Social Care (NHS/HSC) data are variably shared between healthcare organisations for direct care, and increasingly de-identified for research. Few large-scale studies have examined public opinion on sharing, including of mental health (MH) versus physical health (PH) data. We measured data sharing preferences.Design/setting/interventions/outcomesPre-registered anonymous online survey, measuring expressed preferences, recruiting February to September 2020. Participants were randomised to one of three framing statements regarding MH versus PH data.ParticipantsOpen to all UK residents. Participants numbered 29 275; 40% had experienced an MH condition.ResultsMost (76%) supported identifiable data sharing for direct clinical care without explicit consent, but 20% opposed this. Preference for clinical/identifiable sharing decreased with geographical distance and was slightly less for MH than PH data, with small framing effects. Preference for research/de-identified data sharing without explicit consent showed the same small PH/MH and framing effects, plus greater preference for sharing structured data than de-identified free text. There was net support for research sharing to the NHS, academic institutions, and national research charities, net ambivalence about sharing to profit-making companies researching treatments, and net opposition to sharing to other companies (similar to sharing publicly). De-identified linkage to non-health data was generally supported, except to data held by private companies. We report demographic influences on preference. A majority (89%) supported a single NHS mechanism to choose uses of their data. Support for data sharing increased during COVID-19.ConclusionsSupport for healthcare data sharing for direct care without explicit consent is broad but not universal. There is net support for the sharing of de-identified data for research to the NHS, academia, and the charitable sector, but not the commercial sector. A single national NHS-hosted system for patients to control the use of their NHS data for clinical purposes and for research would have broad support.Trial registration numberISRCTN37444142.

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“…Through the implementation of participatory data governance frameworks, institutions can involve citizens in establishing the principles by which data is used (Micheli et al., 2020). Models such as civic data trusts, where data are held by an independent party and who facilitate participation by stakeholders in decisions regarding data access, sharing and use, could reduce the barriers to data governance (Kariotis et al., 2020). Such a process of citizen engagement in broader decisions around data privacy and governance is necessary to move beyond assumptions that privacy is simply about the limitations of data sharing.…”

Section: Additional Considerationsmentioning

confidence: 99%

Knowledge co-creation in participatory policy and practice: Building community through data-driven direct democracy

et al. 2021

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Engaging citizens with digital technology to co-create data, information and knowledge has widely become an important strategy for informing the policy response to COVID-19 and the ‘infodemic’ of misinformation in cyberspace. This move towards digital citizen participation aligns well with the United Nations’ agenda to encourage the use of digital tools to enable data-driven, direct democracy. From data capture to information generation, and knowledge co-creation, every stage of the data lifecycle bears important considerations to inform policy and practice. Drawing on evidence of participatory policy and practice during COVID-19, we outline a framework for citizen ‘e-participation’ in knowledge co-creation across every stage of the policy cycle. We explore how coupling the generation of information with that of social capital can provide opportunities to collectively build trust in institutions, accelerate recovery and facilitate the ‘e-society’. We outline the key aspects of realising this vision of data-driven direct democracy by discussing several examples. Sustaining participatory knowledge co-creation beyond COVID-19 requires that local organisations and institutions (e.g. academia, health and welfare, government, business) incorporate adaptive learning mechanisms into their operational and governance structures, their integrated service models, as well as employing emerging social innovations.

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Emerging health data platforms: From individual control to collective data governance

Cited by 25 publications

References 55 publications

Citizen science as a data-based practice: A consideration of data justice

Citizen science as a data-based practice: A consideration of data justice

Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK

Knowledge co-creation in participatory policy and practice: Building community through data-driven direct democracy

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