Is the Administrative State Ready for Big Data?: Exploring the Accountability Challenges in Environmental and Public Health Regulation

“Big data,” which encompasses massive amounts of information from both within the health sector (such as electronic health records) and outside the health sector (social media, search queries, cell phone metadata, credit card expenditures), is increasingly envisioned as a rich source to inform public health research and practice. This chapter examines the enormous range of sources, the highly varied nature of these data, and the differing motivations for their collection, which together challenge the public health community in ethically mining and exploiting big data. Ethical challenges revolve around the blurring of three previously clearer boundaries: between personal health data and nonhealth data; between the private and the public sphere in the online world; and, finally, between the powers and responsibilities of state and nonstate actors in relation to big data. Considerations include the implications for privacy, control and sharing of data, fair distribution of benefits and burdens, civic empowerment, accountability, and digital disease detection.

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4.C. Round table: Joining forces: frameworks for international and multi-sectoral collaborations in health information

European Journal of Public Health ◽

10.1093/eurpub/ckaa165.141 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

◽

Keyword(s):

Public Health ◽

Big Data ◽

Health Information ◽

Population Health ◽

Round Table ◽

Secondary Use ◽

Use Of Data ◽

National Initiatives ◽

Information Research

Abstract Countries have a wide range of lifestyles, environmental exposures and different health(care) systems providing a large natural experiment to be investigated. Through pan-European comparative studies, underlying determinants of population health can be explored and provide rich new insights into the dynamics of population health and care such as the safety, quality, effectiveness and costs of interventions. Additionally, in the big data era, secondary use of data has become one of the major cornerstones of digital transformation for health systems improvement. Several countries are reviewing governance models and regulatory framework for data reuse. Precision medicine and public health intelligence share the same population-based approach, as such, aligning secondary use of data initiatives will increase cost-efficiency of the data conversion value chain by ensuring that different stakeholders needs are accounted for since the beginning. At EU level, the European Commission has been raising awareness of the need to create adequate data ecosystems for innovative use of big data for health, specially ensuring responsible development and deployment of data science and artificial intelligence technologies in the medical and public health sectors. To this end, the Joint Action on Health Information (InfAct) is setting up the Distributed Infrastructure on Population Health (DIPoH). DIPoH provides a framework for international and multi-sectoral collaborations in health information. More specifically, DIPoH facilitates the sharing of research methods, data and results through participation of countries and already existing research networks. DIPoH's efforts include harmonization and interoperability, strengthening of the research capacity in MSs and providing European and worldwide perspectives to national data. In order to be embedded in the health information landscape, DIPoH aims to interact with existing (inter)national initiatives to identify common interfaces, to avoid duplication of the work and establish a sustainable long-term health information research infrastructure. In this workshop, InfAct lays down DIPoH's core elements in coherence with national and European initiatives and actors i.e. To-Reach, eHAction, the French Health Data Hub and ECHO. Pitch presentations on DIPoH and its national nodes will set the scene. In the format of a round table, possible collaborations with existing initiatives at (inter)national level will be debated with the audience. Synergies will be sought, reflections on community needs will be made and expectations on services will be discussed. The workshop will increase the knowledge of delegates around the latest health information infrastructure and initiatives that strive for better public health and health systems in countries. The workshop also serves as a capacity building activity to promote cooperation between initiatives and actors in the field. Key messages DIPoH an infrastructure aiming to interact with existing (inter)national initiatives to identify common interfaces, avoid duplication and enable a long-term health information research infrastructure. National nodes can improve coordination, communication and cooperation between health information stakeholders in a country, potentially reducing overlap and duplication of research and field-work.

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The academic viewpoint on Big data and patient data ownership (as seen in the scientific literature)

European Journal of Public Health ◽

10.1093/eurpub/ckaa166.171 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

I Mircheva ◽

M Mirchev

Keyword(s):

Public Health ◽

Big Data ◽

Medical Research ◽

Information And Communication Technologies ◽

Patient Information ◽

Scientific Literature ◽

Medical Data ◽

Patient Data ◽

Academic Community ◽

Ethical Challenges

Abstract Background Ownership of patient information in the context of Big Data is a relatively new problem, apparently not yet fully understood. There are not enough publications on the subject. Since the topic is interdisciplinary, incorporating legal, ethical, medical and aspects of information and communication technologies, a slightly more sophisticated analysis of the issue is needed. Aim To determine how the medical academic community perceives the issue of ownership of patient information in the context of Big Data. Methods Literature search for full text publications, indexed in PubMed, Springer, ScienceDirect and Scopus identified only 27 appropriate articles authored by academicians and corresponding to three focus areas: problem (ownership); area (healthcare); context (Big Data). Three major aspects were studied: scientific area of publications, aspects and academicians' perception of ownership in the context of Big Data. Results Publications are in the period 2014 - 2019, 37% published in health and medical informatics journals, 30% in medicine and public health, 19% in law and ethics; 78% authored by American and British academicians, highly cited. The majority (63%) are in the area of scientific research - clinical studies, access and use of patient data for medical research, secondary use of medical data, ethical challenges to Big data in healthcare. The majority (70%) of the publications discuss ownership in ethical and legal aspects and 67% see ownership as a challenge mostly to medical research, access control, ethics, politics and business. Conclusions Ownership of medical data is seen first and foremost as a challenge. Addressing this challenge requires the combined efforts of politicians, lawyers, ethicists, computer and medical professionals, as well as academicians, sharing these efforts, experiences and suggestions. However, this issue is neglected in the scientific literature. Publishing may help in open debates and adequate policy solutions. Key messages Ownership of patient information in the context of Big Data is a problem that should not be marginalized but needs a comprehensive attitude, consideration and combined efforts from all stakeholders. Overcoming the challenge of ownership may help in improving healthcare services, medical and public health research and the health of the population as a whole.

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Health(y) education: A critical analysis of the role of public health regulation in and on tertiary education in Aotearoa New Zealand

Policy Futures in Education ◽

10.1177/1478210321995013 ◽

2021 ◽

pp. 147821032199501

Author(s):

Susan Shaw ◽

Keith Tudor

Keyword(s):

Public Health ◽

New Zealand ◽

Critical Analysis ◽

Tertiary Education ◽

Power Dynamics ◽

Policy And Practice ◽

Educational Design ◽

Aotearoa New Zealand ◽

Public Health Regulation

This article offers a critical analysis of the role of public health regulation on tertiary education in Aotearoa New Zealand and, specifically, the requirements and processes of Responsible Authorities under the Health Practitioners Competence Assurance Act for the accreditation and monitoring of educational institutions and their curricula (degrees, courses of studies, or programmes). It identifies and discusses a number of issues concerned with the requirements of such accreditation and monitoring, including, administrative requirements and costs, structural requirements, and the implications for educational design. Concerns with the processes of these procedures, namely the lack of educational expertise on the part of the Responsible Authorities, and certain manifested power dynamics are also highlighted. Finally, the article draws conclusions for changing policy and practice.

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Public health, regulation and public protection

Public Health ◽

10.1016/s0033-3506(03)00085-4 ◽

2003 ◽

Vol 117 (3) ◽

pp. 147-148 ◽

Cited By ~ 1

Author(s):

Fiona Sim ◽

Phil Mackie

Keyword(s):

Public Health ◽

Public Health Regulation

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Leveraging Artificial Intelligence and Big Data to Optimize COVID-19 Clinical Public Health and Vaccination Roll-Out Strategies in Africa

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18157890 ◽

2021 ◽

Vol 18 (15) ◽

pp. 7890

Author(s):

Bruce Mellado ◽

Jianhong Wu ◽

Jude Dzevela Kong ◽

Nicola Luigi Bragazzi ◽

Ali Asgary ◽

...

Keyword(s):

Public Health ◽

Artificial Intelligence ◽

Machine Learning ◽

Big Data ◽

Developed Countries ◽

Machine Learning Techniques ◽

Multiple Data ◽

Learning Techniques ◽

Unequal Access ◽

Roll Out

COVID-19 is imposing massive health, social and economic costs. While many developed countries have started vaccinating, most African nations are waiting for vaccine stocks to be allocated and are using clinical public health (CPH) strategies to control the pandemic. The emergence of variants of concern (VOC), unequal access to the vaccine supply and locally specific logistical and vaccine delivery parameters, add complexity to national CPH strategies and amplify the urgent need for effective CPH policies. Big data and artificial intelligence machine learning techniques and collaborations can be instrumental in an accurate, timely, locally nuanced analysis of multiple data sources to inform CPH decision-making, vaccination strategies and their staged roll-out. The Africa-Canada Artificial Intelligence and Data Innovation Consortium (ACADIC) has been established to develop and employ machine learning techniques to design CPH strategies in Africa, which requires ongoing collaboration, testing and development to maximize the equity and effectiveness of COVID-19-related CPH interventions.

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Leviathan, or the Rudder of Public Health

Biomedicine Hub ◽

10.1159/000479490 ◽

2017 ◽

Vol 2 (Suppl. 1) ◽

pp. 1-8

Author(s):

Denis Horgan ◽

Walter Ricciardi

Keyword(s):

Public Health ◽

Big Data ◽

New Technologies ◽

Personalised Medicine ◽

Member States ◽

Reform Agenda ◽

The World ◽

The Face ◽

The Eu ◽

Do So

In the world of modern health, despite the fact that we've been blessed with amazing advances of late - the advent of personalised medicine is just one example - “change” for most citizens seems slow. There are clear discrepancies in availability of the best care for all, the divisions in access from country to country, wealthy to poor, are large. There are even discrepancies between regions of the larger countries, where access often varies alarmingly. Too many Member States (with their competence for healthcare) appear to be clinging stubbornly to the concept of “one-size-fits-all” in healthcare and often stifle advances possible through personalised medicine. Meanwhile, the legislative arena encompassing health has grown big and unwieldy in many respects. And bigger is not always better. The health advances spoken of above, an increased knowledge on the part of patients, the emergence of Big Data and more, are quickly changing the face of healthcare in Europe. But healthcare thinking across the EU isn't changing fast enough. The new technologies will certainly speak for themselves, but only if allowed to do so. Acknowledging that, this article highlights a positive reform agenda, while explaining that new avenues need to be explored.

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