Implementation of a Health Data-Sharing Infrastructure Across Diverse Primary Care Organizations

IntroductionLarge volumes of health data are generated through the interaction of individuals with hospitals, government agencies and health care providers. There is potential in the linkage and sharing of administrative data with private industry to support improved drug and device provision but data sharing is highly contentious. Objectives and ApproachWe conducted a scoping review of quantitative and qualitative studies examining public attitudes towards the sharing of health data, held by government, with private industry for research and development. We searched four data bases, PubMed, Scopus, Cinahl and Web of Science as well as Google Scholar and Google Advanced. The search was confined to English-only publications since January 2014 but was not geographically limited. We thematically coded included papers. ResultsWe screened 6788 articles. Thirty-six studies were included primarily from UK and North America. No Australian studies were identified. Across studies, willingness to share non-identified data was generally high with the participant’s own health provider (84-91%) and academic researchers (64-93%) but fell if the data was to be shared with private industry (14-53%). There was widespread misunderstanding of the benefits of sharing data for health research. Publics expressed concern about a range of issues including data security, misuse of data and use of data to generate profit. Conditions which would increase public confidence in sharing of data included: strict safeguards on data collection and use including secure storage, opt-in or opt-out consent mechanisms, and good communication through trusted agents. Conclusion / ImplicationsWe identified a research gap: Australian views on sharing government health data with private industry. The international experience suggests that public scepticism about data sharing with private industry will need to be addressed by good communication about public benefit of data sharing, a strong program of public engagement and information sharing conducted through trusted entities.

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Health Data Sharing in US Nursing Homes: A Mixed Methods Study

Journal of the American Medical Directors Association ◽

10.1016/j.jamda.2020.02.009 ◽

2020 ◽

Cited By ~ 2

Author(s):

Kimberly R. Powell ◽

Chelsea B. Deroche ◽

Gregory L. Alexander

Keyword(s):

Mixed Methods ◽

Nursing Homes ◽

Data Sharing ◽

Health Data ◽

Mixed Methods Study

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The French Health Data Hub and the German Medical Informatics Initiatives: Two National Projects to Promote Data Sharing in Healthcare

Yearbook of Medical Informatics ◽

10.1055/s-0039-1677917 ◽

2019 ◽

Vol 28 (01) ◽

pp. 195-202 ◽

Cited By ~ 6

Author(s):

Marc Cuggia ◽

Stéphanie Combes

Keyword(s):

Data Sharing ◽

Medical Informatics ◽

Data Privacy ◽

Data Use ◽

Health Data ◽

The European Union ◽

Global Approach ◽

Data Governance ◽

Academic Hospitals ◽

Access Data

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.

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Secure Health Data Sharing for Medical Cyber-Physical Systems for the Healthcare 4.0

IEEE Journal of Biomedical and Health Informatics ◽

10.1109/jbhi.2020.2973467 ◽

2020 ◽

Vol 24 (9) ◽

pp. 2499-2505 ◽

Cited By ~ 7

Author(s):

Han Qiu ◽

Meikang Qiu ◽

Meiqin Liu ◽

Gerard Memmi

Keyword(s):

Data Sharing ◽

Cyber Physical Systems ◽

Health Data ◽

Physical Systems

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Mental health professionals’ perceptions on patients control of data sharing

Health Informatics Journal ◽

10.1177/1460458219893845 ◽

2020 ◽

Vol 26 (3) ◽

pp. 2011-2029 ◽

Cited By ~ 1

Author(s):

Julia Ivanova ◽

Adela Grando ◽

Anita Murcko ◽

Michael Saks ◽

Mary Jo Whitfield ◽

...

Keyword(s):

Mental Health ◽

Health Information ◽

Data Sharing ◽

Mental Health Professionals ◽

Health Professionals ◽

Health Care Professionals ◽

Health Data ◽

Structured Interviews ◽

Timely Access ◽

The Impact

Integrated mental and physical care environments require data sharing, but little is known about health professionals’ perceptions of patient-controlled health data sharing. We describe mental health professionals’ views on patient-controlled data sharing using semi-structured interviews and a mixed-method analysis with thematic coding. Health information rights, specifically those of patients and health care professionals, emerged as a key theme. Behavioral health professionals identified patient motivations for non-sharing sensitive mental health records relating to substance use, emergency treatment, and serious mental illness (94%). We explore conflicts between professional need for timely access to health information and patient desire to withhold some data categories. Health professionals’ views on data sharing are integral to the redesign of health data sharing and informed consent. As well, they seek clarity about the impact of patient-controlled sharing on health professionals’ roles and scope of practice.

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Big data or big risk: general practitioner, practice nurse and practice manager attitudes to providing de-identified patient health data from electronic medical records to researchers

Australian Journal of Primary Health ◽

10.1071/py20153 ◽

2020 ◽

Vol 26 (6) ◽

pp. 466

Author(s):

Timothy Monaghan ◽

Jo-Anne Manski-Nankervis ◽

Rachel Canaway

Keyword(s):

Primary Care ◽

Health Information ◽

Electronic Medical Records ◽

Medical Records ◽

Health Data ◽

Positive Effects ◽

Patient Consent ◽

Patient Health ◽

General Practices ◽

Patient Health Information

Research utilising de-identified patient health information extracted from electronic medical records (EMRs) from general practices has steadily grown in recent years in response to calls to increase use of health data for research and other secondary purposes in Australia. Little is known about the views of key primary care personnel on this issue, which are important, as they may influence whether practices agree to provide EMR data for research. This exploratory qualitative study investigated the attitudes and beliefs of general practitioners (GPs), practice managers (PMs) and practice nurses (PNs) around sharing de-identified EMR patient health information with researchers. Semi-structured interviews were conducted with 11 participants (6 GPs, 3 PMs and 2 PNs) recruited via purposive sampling from general practices in Victoria, Australia. Transcripts were coded and thematically analysed. Participants were generally enthusiastic about research utilising de-identified health information extracted from EMRs for altruistic reasons, including: positive effects on primary care research, clinical practice and population health outcomes. Concerns raised included patient privacy and data breaches, third-party use of extracted data and patient consent. These findings can provide guidance to researchers and policymakers in designing and implementing projects involving de-identified health information extracted from EMRs.

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The Emergence of Voluntary Citizen Networks to Circumvent Urban Health Data Sharing Restrictions During Pandemics

Surveying the Covid-19 Pandemic and its Implications ◽

10.1016/b978-0-12-824313-8.00005-x ◽

2020 ◽

pp. 81-88

Author(s):

Zaheer Allam

Keyword(s):

Data Sharing ◽

Urban Health ◽

Health Data

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On the Coronavirus (COVID-19) Outbreak and the Smart City Network: Universal Data Sharing Standards Coupled with Artificial Intelligence (AI) to Benefit Urban Health Monitoring and Management

Healthcare ◽

10.3390/healthcare8010046 ◽

2020 ◽

Vol 8 (1) ◽

pp. 46 ◽

Cited By ~ 70

Author(s):

Zaheer Allam ◽

David S. Jones

Keyword(s):

Artificial Intelligence ◽

Data Sharing ◽

Urban Health ◽

Health Monitoring ◽

Smart City ◽

Political Influence ◽

Health Data ◽

The Other ◽

City Network ◽

Global Understanding

As the Coronavirus (COVID-19) expands its impact from China, expanding its catchment into surrounding regions and other countries, increased national and international measures are being taken to contain the outbreak. The placing of entire cities in ‘lockdown’ directly affects urban economies on a multi-lateral level, including from social and economic standpoints. This is being emphasised as the outbreak gains ground in other countries, leading towards a global health emergency, and as global collaboration is sought in numerous quarters. However, while effective protocols in regard to the sharing of health data is emphasised, urban data, on the other hand, specifically relating to urban health and safe city concepts, is still viewed from a nationalist perspective as solely benefiting a nation’s economy and its economic and political influence. This perspective paper, written one month after detection and during the outbreak, surveys the virus outbreak from an urban standpoint and advances how smart city networks should work towards enhancing standardization protocols for increased data sharing in the event of outbreaks or disasters, leading to better global understanding and management of the same.

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