scholarly journals Do You Need My Health Data - Just Ask: Using Blockchain Technology for Collaborative Patient-Centric Health Care

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Tharuka Rupasinghe
Keyword(s):  
Clinical Data ◽  
Data Analytics ◽  
Healthcare Providers ◽  
Data Access ◽  
Health Data ◽  
Smart Contracts ◽  
Secondary Use ◽  
Blockchain Technology ◽  
Patient Consent ◽  
Patient Centric

IntroductionAcquiring healthcare data for secondary use should benefit from a transparent and highly auditable process when handling patient consent. In the current healthcare infrastructure, the healthcare providers hold the stewardship for the patient data, which includes an authority to determine the data access often without involving the respective patients. The current approach to obtaining patient consent as a one-off task is inadequate to facilitate continuous communication among the patients, healthcare providers and data requestors to manage more personalised data access. Objectives and ApproachThis study explores a novel dynamic patient consent mechanism based on blockchain technology and smart contracts. The aim is to enable patients to actively participate in this process by dynamically managing data consent preferences. Furthermore, it also explores the feasibility of implementing a transparent and auditable collaborative access control infrastructure for clinical data analytics, where all the stakeholders can be involved in determining access to health data. ResultsThe solution has been designed leveraging the blockchain and smart contracts to ensure auditability and transparency of the consent management process where a set of smart contracts controls access to data with minimum human-interferences. In addition, multiple design goals such as data security, privacy, interoperability, legal compliance and accessibility have also been considered when designing a prototype solution. An empirical evaluation is planned to obtain feedback from stakeholders involved in health data sharing for secondary use. Conclusion / ImplicationsThe contribution of this research study is to augment the existing data acquisition procedures for clinical data analytics using blockchain and smart contracts. The proposed novel approach aims to empower and enable patients to play a more active role in controlling access to their data for secondary use. The study will also illuminate the opportunities and challenges which blockchain-based technologies can address related to creating collaborative patient-centric healthcare.

Foundations for Meaningful Consent in Canada’s Digital Health Ecosystem: Findings from a Pan-Canadian Survey (Preprint)

2021 ◽  
Author(s):  
Nelson Shen ◽  
Iman Kassam ◽  
Haoyu Zhao ◽  
Wei Wang ◽  
Sarah Wickham ◽  
...  
Keyword(s):  
Health Services ◽  
Information Needs ◽  
Digital Health ◽  
Healthcare Providers ◽  
Data Access ◽  
Patient Access ◽  
Access Channel ◽  
Patient Consent ◽  
Data Source ◽  
Healthcare Privacy

BACKGROUND Patients are increasingly gaining online access to digital health services and expect to access their data from various sources through a central patient access channel. For digital health services to connect and mutually share data, it is critical to understand patient consent preferences to meet the privacy needs of Canadians. Understanding user consent requirements and information needs is necessary in developing a trustworthy and transparent consent management system to support patient access channels. OBJECTIVE The objective of this study was to understand (1) data control preferences, (2) information needs for consent, and (3) how preferences and needs may vary by different user characteristics. METHODS A secondary analysis of a national survey was completed using a retrospective descriptive study design. The cross-sectional survey, conducted in October 2019, used a series of vignettes and consent scenarios to develop a deeper understanding of Canadians’ privacy perspectives and preferences for consent management. Non-parametric tests, and logistic regression analyses were conducted to identify differences and associations between the various factors. RESULTS Of the 1017 total responses, 70.4% (716/1017) of participants self-identified as potential users. Almost all (672/716, 93.8%) felt the ability to control their data was important, while 53.8% (385/716) believed an “all or none” control at data source level was adequate. Most users prefer new data sources to be accessible by healthcare providers (546/716, 76.3%) and delegated parties (389/716, 54.3%) by default. Users with positive healthcare privacy experiences were more likely than users with poor experiences to grant default access to healthcare providers (OR 2.78, 95%CI 1.34-5.74) and less likely to grant access to no-one (OR 0.31, 95%CI 0.14-0.72). From a list of nine information elements found in consent forms, users selected an average of 5.70 (SD 2.66) and 5.63 (SD 2.84) items to feel informed in consenting to data access by care partners, and commercial digital health service providers respectively. There were significant differences (p<0.05) in information needs between the scenarios. CONCLUSIONS Many survey participants would register and use a patient access channel and believe the ability to control data access is important, especially as it pertains to access by those outside their care. Positive healthcare experiences were a significant factor in this decision, signaling the importance of providing positive healthcare privacy experiences in both physical and digital environments. These findings suggest broad “all-or-none” approach by data source may be accepted; however, approximately one-fifth of users were unable to decide. Although vignettes were used to introduce the questions, this study showed that more context is required for users to make an informed decision. Understanding their information needs will be critical, as these needs varied with use case, highlighting the importance of prioritizing and tailoring information to enable meaningful consent.

scholarly journals Alberta's Data and Analytic Strategy: Leveraging Linked Data to Drive Innovation

2019 ◽  
Vol 4 (3) ◽  
Author(s):  
Larry Svenson
Keyword(s):  
Health System ◽  
Health Information ◽  
Data Warehouse ◽  
Data Access ◽  
Health Data ◽  
Direct Access ◽  
Safe Haven ◽  
For Profit ◽  
Secondary Use ◽  
Not For Profit

BackgroundThe Province of Alberta, Canada, maintains a mature data environment with linkable administrative and clinical data dating back up to 30 years. Alberta has a single payer, publicly funded and administered, universal health system, which maintains multiple administrative data sets. Main AimThe main aim of the strategy is to fully maximize the data assets in the province to drive health system health system innovation, with a focus on improving health outcomes and quality of life. Methods/ApproachThe Alberta Ministry of Health has created the Secondary Use Data Access (SUDA) initiative to leverage its administrative health data. SUDA envisions strengthening partnerships between the public and private sectors through two main data access approaches. The first is direct access to de-identified data held within the Alberta Health data warehouse by key health system stakeholders (e.g. academic institutions, professional associations, regulatory colleges). The second is indirect access to private and not-for-profit organizations, using a data access safe haven (DASH) approach. Indirect access is achieved through private sector investments to a trusted third party that hires analysts placed within the Ministry of Health offices. ResultsStaffing agreements and privacy impact assessments are in place. Indirect access includes a multiple stakeholder steering committee to vet and prioritize projects. Private and not-for-profit stakeholders do not have access to raw data, but rather receive access to aggregated data and statistical models. All data disclosures are done by Ministry staff to ensure compliance with Alberta's Health Information Act. Direct access has been established for one professional organization and one academic institution, with access restricted to de-identified data. ConclusionThe Secondary Use Data Access initiative uses a safe haven approach to leveraging data to provide a more secure approach to data access. It reduces the need to provision data outside of the data warehouse while improving timely access to data. The approach provides assurances that people's health information is held secure, while also being used to create health system improvements.

scholarly journals A Scalable Data Access Layer to Manage Structured Heterogeneous Biomedical Data

2016 ◽  
Author(s):  
Giovanni Delussu ◽  
Luca Lianas ◽  
Francesca Frexia ◽  
Gianluigi Zanetti
Keyword(s):  
Clinical Data ◽  
Data Access ◽  
Constant Load ◽  
Management Systems ◽  
Biomedical Data ◽  
Constant Number ◽  
Data Management Systems ◽  
Secondary Use ◽  
Speed Up ◽  
Synthetic Datasets

AbstractThis work presents a scalable data access layer, called PyEHR, intended for building data management systems for secondary use of structured heterogeneous biomedical and clinical data. PyEHR adopts openEHR formalisms to guarantee the decoupling of data descriptions from implementation details and exploits structures indexing to speed up searches. The persistence is guarantee by a driver layer with a common driver interface. Presently, are implemented the interfaces with two NoSQL DBMS: MongoDB and Elasticsearch. The scalability of PyEHR has been evaluated experimentally through two types of tests, namely constant load and constant number of records, with queries of increasing complexity on a two synthetic datasets of ten millions records each, containing very complex openEHR archetype structures, distributed on up to ten working nodes.

scholarly journals Infrastructure and operating processes of PIONEER, the HDR-UK Data Hub in Acute Care and the workings of the Data Trust Committee: a protocol paper

2021 ◽  
Vol 28 (1) ◽  
pp. e100294
Author(s):  
Suzy Gallier ◽  
Gary Price ◽  
Hina Pandya ◽  
Gillian McCarmack ◽  
Chris James ◽  
...  
Keyword(s):  
Acute Care ◽  
Healthcare Providers ◽  
Data Access ◽  
Health Data ◽  
Advisory Group ◽  
Research Database ◽  
The Public ◽  
East Midlands ◽  
Routinely Collected Health Data ◽  
Patient Health

IntroductionHealth Data Research UK designated seven UK-based Hubs to facilitate health data use for research. PIONEER is the Hub in Acute Care. PIONEER delivered workshops where patients/public citizens agreed key principles to guide access to unconsented, anonymised, routinely collected health data. These were used to inform the protocol.MethodsThis paper describes the PIONEER infrastructure and data access processes. PIONEER is a research database and analytical environment that links routinely collected health data across community, ambulance and hospital healthcare providers. PIONEER aims ultimately to improve patient health and care, by making health data discoverable and accessible for research by National Health Service, academic and commercial organisations. The PIONEER protocol incorporates principles identified in the public/patient workshops. This includes all data access requests being reviewed by the Data Trust Committee, a group of public citizens who advise on whether requests should be supported prior to licensed access.Ethics and disseminationEast Midlands–Derby REC (20/EM/0158): Confidentiality Advisory Group (20/CAG/0084). www.PIONEERdatahub.co.uk

A Concrete Way to Develop Clinical Research in a Fair Way to the Users/Patients Using Blockchain Technology

2021 ◽  
pp. 228-249
Author(s):  
João Fonseca-Gomes ◽  
Denise Francisco ◽  
João Mota Sequeira
Keyword(s):  
Clinical Research ◽  
Clinical Data ◽  
Data Security ◽  
Health Data ◽  
Third Party ◽  
Potential Solution ◽  
Blockchain Technology ◽  
Hypothetical Scenario ◽  
The One ◽  
Pain Points

Blockchain is being explored as a potential solution to many problems in areas other than the one created initially: cryptocurrency. Blockchain technology allows the authenticity of data, security in transactions, and privacy without the need for a third party. For that main reason, one of the growing interests concerns its application in healthcare, namely in clinical research. Multiple pain points of clinical research might benefit from the implementation of blockchain technology. This chapter shows some examples in which this technology is already implemented, identifying the advantages of its use. One of those advantages is clinical research, with the possibility of the patients managing their own clinical data and being properly rewarded for that. Research about clinical data monetization for patients is currently limited, and this chapter also proposes a hypothetical scenario of health data monetization workflow.

The journey of research data: Accessing nordic health data for the purposes of developing an algorithm

2021 ◽  
pp. 096853322110461
Author(s):  
Katharina Ó Cathaoir ◽  
Hrefna Dögg Gunnarsdóttir ◽  
Mette Hartlev
Keyword(s):  
Data Protection ◽  
Data Access ◽  
Ethics Committees ◽  
Health Data ◽  
Data Sets ◽  
Domestic Institutions ◽  
General Data Protection Regulation ◽  
Secondary Use ◽  
General Data ◽  
Access Data

This article traces the journey of Nordic health data requested for developing a healthcare algorithm. We focus on the legal requirements and highlight that differences in the legislation of Denmark, Norway and Iceland, and the interpretation thereof by responsible bodies, can pose a barrier for scientific researchers. In addition, non-legal institutional requirements or practices may hamper data access. First, despite some European harmonization, the mandate of research ethics committees and the data protection authorities vary in the three countries. Second, domestic institutions impose tailored requirements, sometimes only allowing domestic or affiliated researchers to access data sets. Third, the manner in which a dataset is collected, catalogued and stored has implications for data access. We make several recommendations for increasing transparency in Nordic data access, such as, increasing knowledge sharing regarding interpretation of General Data Protection Regulation (GDPR) criteria, adopting clearer regulations and pursuing greater citizen engagement in secondary use of health data.

scholarly journals Alberta's Data Mobilization Strategy: Leveraging Linked Data for Innovation

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Larry Svenson ◽  
Kimberley Simmonds ◽  
Alexa Perry ◽  
Justin Riemer
Keyword(s):  
Health Information ◽  
Data Warehouse ◽  
Data Access ◽  
Health Data ◽  
Direct Access ◽  
Safe Haven ◽  
For Profit ◽  
Secondary Use ◽  
Not For Profit ◽  
Alberta Health

IntroductionThe Province of Alberta maintains a mature data ecosystem with linkable data dating back over 30 years. The population-based nature of the data makes this a valuable asset for driving analytics to support health system innovation, with a focus on improving health outcomes and quality of life. Objectives and ApproachAlberta Health has created the Secondary Use Data Access (SUDA) initiative to leverage its administrative health data. SUDA envisions strengthening partnerships between the public and private sectors with two main access approaches. The first is direct access to de-identified data held within the Alberta Health data warehouse by key health system stakeholders (e.g. academic instituions, Health Quality Council of Alberta, regulatory colleges). The second is indirect access to private and not-for-profit stakeholders, using a safe haven approach. Indirect access is achieved through private sector investments to a trusted third party that hires analysts to be placed within Alberta Health. ResultsStaffing agreements and privacy impact assessments have been drafted to support the work. The indirect access route includes a multiple stakeholder steering committee to vette and prioritize projects. Private and not-for-profit stakeholders do not have access to the data, but rather receive access to aggregate data and statitstical models. All disclosures are done by Alberta Health staff to ensure compliance with Alberta's Health Information Act. Direct access has been established for the Alberta Medical Association as part of a long standing data sharing agreement, with access restricted to de-identified data only. To date, seven industry proposals for analytics have been received and are currently being actioned. Conclusion/ImplicationsThe Secondary Use Data Access initiative uses a safe haven approach to leveraging data. It reduces the need to provision data outside of the data warehouse and allows for better monitoring of access and use of data. The approach provides assurances that people's health information is secure.

scholarly journals Healthcare Data Analytics

2020 ◽  
Author(s):  
Ivana Ognjanovic
Keyword(s):  
Patient Care ◽  
Data Analytics ◽  
Historical Data ◽  
Healthcare Providers ◽  
Diagnostic Procedures ◽  
Health Data ◽  
High Dimensionality ◽  
Healthcare Data

Health analytics is a branch of analysis that focuses on the analysis of complex and large amounts of health data that are characterized by high dimensionality, irregularities and rarities. Their aim is to improve and increase the efficiency of the process of healthcare providers, working with patients, managing costs and resources, improve diagnostic procedures and treatments, etc. The prime focus is investigating historical data and finding templates for different scenarios. As a final product, usually different visualisation tools are produced to support practitioners in patient care to provide better services, and to improve existing procedures.

scholarly journals Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
C. Atkin ◽  
B. Crosby ◽  
K. Dunn ◽  
G. Price ◽  
E. Marston ◽  
...  
Keyword(s):  
Data Sharing ◽  
Public Awareness ◽  
Data Use ◽  
Academic Research ◽  
Secondary Data ◽  
Data Access ◽  
Health Data ◽  
Healthcare Staff ◽  
Secondary Use ◽  
Opt Out

Abstract Background England operates a National Data Opt-Out (NDOO) for the secondary use of confidential health data for research and planning. We hypothesised that public awareness and support for the secondary use of health data and the NDOO would vary by participant demography and healthcare experience. We explored patient/public awareness and perceptions of secondary data use, grouping potential researchers into National Health Service (NHS), academia or commercial. We assessed awareness of the NDOO system amongst patients, carers, healthcare staff and the public. We co-developed recommendations to consider when sharing unconsented health data for research. Methods A patient and public engagement program, co-created and including patient and public workshops, questionnaires and discussion groups regarding anonymised health data use. Results There were 350 participants in total. Central concerns for health data use included unauthorised data re-use, the potential for discrimination and data sharing without patient benefit. 94% of respondents were happy for their data to be used for NHS research, 85% for academic research and 68% by health companies, but less than 50% for non-healthcare companies and opinions varied with demography and participant group. Questionnaires showed that knowledge of the NDOO was low, with 32% of all respondents, 53% of all NHS staff and 29% of all patients aware of the NDOO. Recommendations to guide unconsented secondary health data use included that health data use should benefit patients; data sharing decisions should involve patients/public. That data should remain in close proximity to health services with the principles of data minimisation applied. Further, that there should be transparency in secondary health data use, including publicly available lists of projects, summaries and benefits. Finally, organisations involved in data access decisions should participate in programmes to increase knowledge of the NDOO, to ensure public members were making informed choices about their own data. Conclusion The majority of participants in this study reported that the use of healthcare data for secondary purposes was acceptable when accessed by NHS. Academic and health-focused companies. However, awareness was limited, including of the NDOO. Further development of publicly-agreed recommendations for secondary health data use may improve both awareness and confidence in secondary health data use.

scholarly journals A Blockchain-Based Dynamic Consent Architecture to Support Clinical Genomic Data Sharing (ConsentChain): Proof-of-Concept Study (Preprint)

2021 ◽  
Author(s):  
Faisal Albalwy ◽  
Andrew Brass ◽  
Angela Davies
Keyword(s):  
Data Sharing ◽  
Genomic Data ◽  
Data Access ◽  
Patient Data ◽  
Smart Contracts ◽  
Proof Of Concept ◽  
Data Governance ◽  
Dynamic Consent ◽  
Patient Consent ◽  
Clinical Genomic

BACKGROUND In clinical genomics, sharing of rare genetic disease information between genetic databases and laboratories is essential to determine the pathogenic significance of variants to enable the diagnosis of rare genetic diseases. Significant concerns regarding data governance and security have reduced this sharing in practice. Blockchain could provide a secure method for sharing genomic data between involved parties and thus help overcome some of these issues. OBJECTIVE This study aims to contribute to the growing knowledge of the potential role of blockchain technology in supporting the sharing of clinical genomic data by describing blockchain-based dynamic consent architecture to support clinical genomic data sharing and provide a proof-of-concept implementation, called ConsentChain, for the architecture to explore its performance. METHODS The ConsentChain requirements were captured from a patient forum to identify security and consent concerns. The ConsentChain was developed on the Ethereum platform, in which smart contracts were used to model the actions of patients, who may provide or withdraw consent to share their data; the data creator, who collects and stores patient data; and the data requester, who needs to query and access the patient data. A detailed analysis was undertaken of the ConsentChain performance as a function of the number of transactions processed by the system. RESULTS We describe ConsentChain, a blockchain-based system that provides a web portal interface to support clinical genomic sharing. ConsentChain allows patients to grant or withdraw data requester access and allows data requesters to query and submit access to data stored in a secure off-chain database. We also developed an ontology model to represent patient consent elements into machine-readable codes to automate the consent and data access processes. CONCLUSIONS Blockchains and smart contracts can provide an efficient and scalable mechanism to support dynamic consent functionality and address some of the barriers that inhibit genomic data sharing. However, they are not a complete answer, and a number of issues still need to be addressed before such systems can be deployed in practice, particularly in relation to verifying user credentials.

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