scholarly journals How data governance technologies can democratize data sharing for community well-being

Data & Policy ◽  
2021 ◽  
Vol 3 ◽  
Author(s):  
Dan Wu ◽  
Stefaan Verhulst ◽  
Alex Pentland ◽  
Thiago Avila ◽  
Kelsey Finch ◽  
...  

Abstract Data sharing efforts to allow underserved groups and organizations to overcome the concentration of power in our data landscape. A few special organizations, due to their data monopolies and resources, are able to decide which problems to solve and how to solve them. But even though data sharing creates a counterbalancing democratizing force, it must nevertheless be approached cautiously. Underserved organizations and groups must navigate difficult barriers related to technological complexity and legal risk. To examine what those common barriers are, one type of data sharing effort—data trusts—are examined, specifically the reports commenting on that effort. To address these practical issues, data governance technologies have a large role to play in democratizing data trusts safely and in a trustworthy manner. Yet technology is far from a silver bullet. It is dangerous to rely upon it. But technology that is no-code, flexible, and secure can help more responsibly operate data trusts. This type of technology helps innovators put relationships at the center of their efforts.

Data & Policy ◽  
2021 ◽  
Vol 3 ◽  
Author(s):  
Dan Wu ◽  
Stefaan G. Verhulst ◽  
Alex Pentland ◽  
Thiago Avila ◽  
Kelsey Finch ◽  
...  

2019 ◽  
Vol 28 (01) ◽  
pp. 195-202 ◽  
Author(s):  
Marc Cuggia ◽  
Stéphanie Combes

Objective: The diversity and volume of health data have been rapidly increasing in recent years. While such big data hold significant promise for accelerating discovery, data use entails many challenges including the need for adequate computational infrastructure and secure processes for data sharing and access. In Europe, two nationwide projects have been launched recently to support these objectives. This paper compares the French Health Data Hub initiative (HDH) to the German Medical Informatics Initiatives (MII). Method: We analysed the projects according to the following criteria: (i) Global approach and ambitions, (ii) Use cases, (iii) Governance and organization, (iv) Technical aspects and interoperability, and (v) Data privacy access/data governance. Results: The French and German projects share the same objectives but are different in terms of methodologies. The HDH project is based on a top-down approach and focuses on a shared computational infrastructure, providing tools and services to speed projects between data producers and data users. The MII project is based on a bottom-up approach and relies on four consortia including academic hospitals, universities, and private partners. Conclusion: Both projects could benefit from each other. A Franco-German cooperation, extended to other countries of the European Union with similar initiatives, should allow sharing and strengthening efforts in a strategic area where competition from other countries has increased.


Author(s):  
Catherine Bromley

Background with rationaleThe Office for Statistics Regulation is the UK’s independent regulator of official statistics produced by public sector bodies. The Code of Practice for Statistics sets out our expectations for statistics to be produced in a trustworthy way, be of high quality, and to serve the public good by informing answers to society’s important questions. We now live in a world of increasingly abundant data. Statistics producers need to adapt to this environment, and so do we as regulators. ApproachThe Code of Practice was updated in 2018 with new provisions to maximise the potential use of data for both citizens and organisations, and to make data available for wider reuse with appropriate safeguards. We have supplemented our commitment to these provisions with a review of data sharing and linking in government, new regulatory guidance on data governance, an increased focus on data access challenges (particularly users of English health data), and by putting data at the heart of our regulatory vision (published in summer 2019). These steps build on our existing work around admin data quality. OverviewThe National Statistician’s response to our data sharing and linkage review included many welcome commitments and a major review of data linkage methodology is now underway. A data linkage community is developing across government. However, we have raised concerns about ongoing difficulties with admin data sharing between departments, resource constraints, and the limited extent of public engagement about data sharing and use. ConclusionsOur regulatory approach to data is evolving and we are building new relationships with organisations with an interest in data beyond the statistics world. Our work to support users to access admin data may yet require more direct interventions to bring about the outcomes we desire. We are keen to share our experiences with admin data users.


Animals ◽  
2021 ◽  
Vol 11 (10) ◽  
pp. 2981
Author(s):  
Roger Cue ◽  
Mark Doornink ◽  
Regi George ◽  
Benjamin Griffiths ◽  
Matthew W. Jorgensen ◽  
...  

Data governance is a growing concern in the dairy farm industry because of the lack of legal regulation. In this commentary paper, we discuss the status quo of the available legislation and codes, as well as some possible solutions. To our knowledge, there are currently four codes of practice that address agriculture data worldwide, and their objectives are similar: (1) raise awareness of diverse data challenges such as data sharing and data privacy, (2) provide data security, and (3) illustrate the importance of the transparency of terms and conditions of data sharing contracts. However, all these codes are voluntary, which limits their adoption. We propose a Farmers Bill of Rights for the dairy data ecosystem to address some key components around data ownership and transparency in data sharing. Our hope is to start the discussion to create a balanced environment to promote equity within the data economy, encourage proper data stewardship, and to foster trust and harmony between the industry companies and the farmers when it comes to sharing data.


2019 ◽  
Vol 4 ◽  
pp. 184 ◽  
Author(s):  
Buddhika Fernando ◽  
Mandella King ◽  
Athula Sumathipala

Ethical and effective data-sharing among countries can be achieved by considering the interests of all relevant parties: research participants, researchers and funders. Fears of exploitation, however, both of research participants and researchers from low- and middle-income countries (LMIC), can undermine the free flow of data necessary for scientific advancement. In this Open Letter, two case studies presented at the 2018 Global Forum on Bioethics in Research meeting on the Ethics of data sharing and biobanking in Cape Town, South Africa, function as the focal point for a reflection on the attributes of an ideal model of good data governance and how it can help support ethical best practices in biobanking and data sharing. Consideration of the case studies as well as the literature indicate three broad principles that need to be reflected in an ideal data governance framework: (i) collaboration - both among researchers as well as between researchers and participants, (ii) fairness – ensuring that all parties in international collaborations, the data provider, primary data gathering LMIC researcher and the high income country (HIC) institution/funder are treated fairly, and (iii) working towards a level playing field – neither collaboration nor fairness can be effectively achieved with the existing power differential between HIC and LMIC researchers/institutions; it is therefore necessary to work towards achieving a more level playing field between partners in research collaborations. Promoting good governance of data through fair, efficient and accountable governance frameworks can help build trust and ensure continued international data sharing.


2021 ◽  
Author(s):  
Susanna Lehtimaki ◽  
Aisling Reidy ◽  
Kassim Nishtar ◽  
Sara Darehschori ◽  
Andrew Painter ◽  
...  

The COVID-19 pandemic has created enormous challenges for national economies, livelihoods, and public services, including health systems. In January 2021, the World Health Organization proposed an international treaty on pandemics to strengthen the political commitment towards global pandemic preparedness, control, and response. The plan is to present a draft treaty to the World Health Assembly in May 2021. To inform the design of a support system for this treaty, we explored existing mechanisms for periodic reviews conducted either by peers or an external group as well as mechanisms for in-country investigations, conducted with or without country consent. Based on our review, we summarized key design principles requisite for review and investigation mechanisms and explain how these could be applied to pandemics preparedness, control, and response in global health. While there is no single global mechanism that could serve as a model in its own right, there is potential to combine aspects of existing mechanisms. A Universal Periodic Review design based on the model of human rights treaties with independent experts as the authorized monitoring body, if made obligatory, could support compliance with a new pandemic treaty. In terms of on-site investigations, the model by the Committee on Prevention of Torture could lend itself to treaty monitoring and outbreak investigations on short notice or unannounced. These mechanisms need to be put in place in accordance with several core interlinked design principles: compliance; accountability; independence; transparency and data sharing; speed; emphasis on capabilities; and incentives. The World Health Organization can incentivize and complement these efforts. It has an essential role in providing countries with technical support and tools to strengthen emergency preparedness and response capacities, including technical support for creating surveillance structures, integrating non-traditional data sources, creating data governance and data sharing standards, and conducting regular monitoring and assessment of preparedness and response capacities.


2013 ◽  
Vol 1 (2) ◽  
pp. XXXX-XXXX ◽  
Author(s):  
C Dowrick ◽  
C Chew-Graham ◽  
K Lovell ◽  
J Lamb ◽  
S Aseem ◽  
...  

BackgroundEvidence-based interventions exist for common mental health problems. However, many people are unable to access effective care because it is not available to them or because interactions with caregivers do not address their needs. Current policy initiatives focus on supply-side factors, with less consideration of demand.Aim and objectivesOur aim was to increase equity of access to high-quality primary mental health care for underserved groups. Our objectives were to clarify the mental health needs of people from underserved groups; identify relevant evidence-based services and barriers to, and facilitators of, access to such services; develop and evaluate interventions that are acceptable to underserved groups; establish effective dissemination strategies; and begin to integrate effective and acceptable interventions into primary care.Methods and resultsExamination of evidence from seven sources brought forward a better understanding of dimensions of access, including how people from underserved groups formulate (mental) health problems and the factors limiting access to existing psychosocial interventions. This informed a multifaceted model with three elements to improve access: community engagement, primary care quality and tailored psychosocial interventions. Using a quasi-experimental design with a no-intervention comparator for each element, we tested the model in four disadvantaged localities, focusing on older people and minority ethnic populations. Community engagement involved information gathering, community champions and focus groups, and a community working group. There was strong engagement with third-sector organisations and variable engagement with health practitioners and commissioners. Outputs included innovative ways to improve health literacy. With regard to primary care, we offered an interactive training package to 8 of 16 practices, including knowledge transfer, systems review and active linking, and seven agreed to participate. Ethnographic observation identified complexity in the role of receptionists in negotiating access. Engagement was facilitated by prior knowledge, the presence of a practice champion and a sense of coproduction of the training. We developed a culturally sensitive well-being intervention with individual, group and signposting elements and tested its feasibility and acceptability for ethnic minority and older people in an exploratory randomised trial. We recruited 57 patients (57% of target) with high levels of unmet need, mainly through general practitioners (GPs). Although recruitment was problematic, qualitative data suggested that patients found the content and delivery of the intervention acceptable. Quantitative analysis suggested that patients in groups receiving the well-being intervention improved compared with the group receiving usual care. The combined effects of the model included enhanced awareness of the psychosocial intervention among community organisations and increased referral by GPs. Primary care practitioners valued community information gathering and access to the Improving Access to Mental Health in Primary Care (AMP) psychosocial intervention. We consequently initiated educational, policy and service developments, including a dedicated website.ConclusionsFurther research is needed to test the generalisability of our model. Mental health expertise exists in communities but needs to be nurtured. Primary care is one point of access to high-quality mental health care. Psychosocial interventions can be adapted to meet the needs of underserved groups. A multilevel intervention to increase access to high-quality mental health care in primary care can be greater than the sum of its parts.Study registrationCurrent Controlled Trials ISRCTN68572159.FundingThe National Institute for Health Research Programme Grants for Applied Research programme.


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