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 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 Building a Semantic Health Data Warehouse in the Context of Clinical Trials: Development and Usability Study (Preprint)

2019 ◽  
Author(s):  
Romain Lelong ◽  
Lina F Soualmia ◽  
Julien Grosjean ◽  
Mehdi Taalba ◽  
Stéfan J Darmoni
Keyword(s):  
Clinical Trials ◽  
Health Information ◽  
Data Warehouse ◽  
Search Engine ◽  
Query Language ◽  
Semantic Annotation ◽  
Data Access ◽  
Health Data ◽  
University Hospital ◽  
Semantic Description

BACKGROUND The huge amount of clinical, administrative, and demographic data recorded and maintained by hospitals can be consistently aggregated into health data warehouses with a uniform data model. In 2017, Rouen University Hospital (RUH) initiated the design of a semantic health data warehouse enabling both semantic description and retrieval of health information. OBJECTIVE This study aimed to present a proof of concept of this semantic health data warehouse, based on the data of 250,000 patients from RUH, and to assess its ability to assist health professionals in prescreening eligible patients in a clinical trials context. METHODS The semantic health data warehouse relies on 3 distinct semantic layers: (1) a terminology and ontology portal, (2) a semantic annotator, and (3) a semantic search engine and NoSQL (not only structured query language) layer to enhance data access performances. The system adopts an entity-centered vision that provides generic search capabilities able to express data requirements in terms of the whole set of interconnected conceptual entities that compose health information. RESULTS We assessed the ability of the system to assist the search for 95 inclusion and exclusion criteria originating from 5 randomly chosen clinical trials from RUH. The system succeeded in fully automating 39% (29/74) of the criteria and was efficiently used as a prescreening tool for 73% (54/74) of them. Furthermore, the targeted sources of information and the search engine–related or data-related limitations that could explain the results for each criterion were also observed. CONCLUSIONS The entity-centered vision contrasts with the usual patient-centered vision adopted by existing systems. It enables more genericity in the information retrieval process. It also allows to fully exploit the semantic description of health information. Despite their semantic annotation, searching within clinical narratives remained the major challenge of the system. A finer annotation of the clinical texts and the addition of specific functionalities would significantly improve the results. The semantic aspect of the system combined with its generic entity-centered vision enables the processing of a large range of clinical questions. However, an important part of health information remains in clinical narratives, and we are currently investigating novel approaches (deep learning) to enhance the semantic annotation of those unstructured data.

scholarly journals Building a Semantic Health Data Warehouse in the Context of Clinical Trials: Development and Usability Study

10.2196/13917 ◽  
2019 ◽  
Vol 7 (4) ◽  
pp. e13917
Author(s):  
Romain Lelong ◽  
Lina F Soualmia ◽  
Julien Grosjean ◽  
Mehdi Taalba ◽  
Stéfan J Darmoni
Keyword(s):  
Clinical Trials ◽  
Health Information ◽  
Data Warehouse ◽  
Search Engine ◽  
Query Language ◽  
Semantic Annotation ◽  
Data Access ◽  
Health Data ◽  
University Hospital ◽  
Semantic Description

Background The huge amount of clinical, administrative, and demographic data recorded and maintained by hospitals can be consistently aggregated into health data warehouses with a uniform data model. In 2017, Rouen University Hospital (RUH) initiated the design of a semantic health data warehouse enabling both semantic description and retrieval of health information. Objective This study aimed to present a proof of concept of this semantic health data warehouse, based on the data of 250,000 patients from RUH, and to assess its ability to assist health professionals in prescreening eligible patients in a clinical trials context. Methods The semantic health data warehouse relies on 3 distinct semantic layers: (1) a terminology and ontology portal, (2) a semantic annotator, and (3) a semantic search engine and NoSQL (not only structured query language) layer to enhance data access performances. The system adopts an entity-centered vision that provides generic search capabilities able to express data requirements in terms of the whole set of interconnected conceptual entities that compose health information. Results We assessed the ability of the system to assist the search for 95 inclusion and exclusion criteria originating from 5 randomly chosen clinical trials from RUH. The system succeeded in fully automating 39% (29/74) of the criteria and was efficiently used as a prescreening tool for 73% (54/74) of them. Furthermore, the targeted sources of information and the search engine–related or data-related limitations that could explain the results for each criterion were also observed. Conclusions The entity-centered vision contrasts with the usual patient-centered vision adopted by existing systems. It enables more genericity in the information retrieval process. It also allows to fully exploit the semantic description of health information. Despite their semantic annotation, searching within clinical narratives remained the major challenge of the system. A finer annotation of the clinical texts and the addition of specific functionalities would significantly improve the results. The semantic aspect of the system combined with its generic entity-centered vision enables the processing of a large range of clinical questions. However, an important part of health information remains in clinical narratives, and we are currently investigating novel approaches (deep learning) to enhance the semantic annotation of those unstructured data.

scholarly journals Protecting health privacy even when privacy is lost

2019 ◽  
Vol 46 (11) ◽  
pp. 768-772 ◽  
Author(s):  
T J Kasperbauer
Keyword(s):  
Health System ◽  
Precision Medicine ◽  
Health Information ◽  
Health Systems ◽  
Personal Information ◽  
Health Data ◽  
Protect Health Information ◽  
Alternative Strategies ◽  
Data Intensive ◽  
Significant Control

The standard approach to protecting privacy in healthcare aims to control access to personal information. We cannot regain control of information after it has been shared, so we must restrict access from the start. This ‘control’ conception of privacy conflicts with data-intensive initiatives like precision medicine and learning health systems, as they require patients to give up significant control of their information. Without adequate alternatives to the control-based approach, such data-intensive programmes appear to require a loss of privacy. This paper argues that the control view of privacy is shortsighted and overlooks important ways to protect health information even when widely shared. To prepare for a world where we no longer control our data, we must pursue three alternative strategies: obfuscate health data, penalise the misuse of health data and improve transparency around who shares our data and for what purposes. Prioritising these strategies is necessary when health data are widely shared both within and outside of the health system.

scholarly journals Public engagement can change your research, but how can it change your research institution? ICES Case Study

2020 ◽  
Vol 5 (3) ◽  
Author(s):  
Jenine Paul ◽  
Randy Davidson ◽  
Cheryl Johnstone ◽  
Margaret Loong ◽  
John Matecsa ◽  
...  
Keyword(s):  
Public Engagement ◽  
Health Data ◽  
Core Element ◽  
Public Input ◽  
For Profit ◽  
Research Institution ◽  
Not For Profit ◽  
The Impact ◽  
Corporate Level

This article explores the approach that ICES (formerly the Institute for Clinical Evaluative Sciences)uses to encourage public engagement at both the research study and corporate level. ICES is anindependent not-for-profit research institute in the province of Ontario, Canada. This article wasco-written by ICES’ public engagement team and four members of the ICES Public AdvisoryCouncil (PAC). As part of the process of writing this article PAC members provided theirreflections on why they got involved, what worked well and the limitations and challenges of ICES’approach. ICES described the development of its public engagement strategy to inform how the institutionwould capture and incorporate the values of Ontarians in ICES activities and research. ICES provideddetails on two key elements of its strategy: the formation of a PAC to advise its leadership, andthe creation of resources and supports to encourage researchers to incorporate public engagementin their projects. PAC members and ICES provided perspectives on what impact they perceive as a result ofthe public engagement strategy. PAC members expressed that ICES has demonstrated listening toand using their input, but it is too early to evaluate if their feedback has changed the way ICESconducts its work. ICES discussed the challenges and successes in building and implementing thepublic engagement strategy, including recruiting a diverse council, aligning with public prioritiesand creating a culture of engagement. As a result of public input, ICES has restructured theway the institution explains its privacy and cybersecurity approach to build trust and confidence.ICES has also seen an increase in researchers using public engagement resources, and early datasuggests that in 2019 about 20% of scientists included some form of public engagement in theirprojects. ICES’ journey to public engagement resulted in important changes to processes and activitiesat the institution, but there is much more that needs to be done. PAC members advocate thatpublic members should be engaged in health data research and hope that public input will bea core element in health data research in the future. ICES will continue its efforts to addresspublic priorities and will seek to further evaluate the impact of public engagement across theorganisation.

scholarly journals Citizens, research ethics committee members and researchers’ attitude toward information and consent for the secondary use of health data: Implications for research within learning health systems

2021 ◽  
Author(s):  
Annabelle Cumyn ◽  
Roxanne Dault ◽  
Adrien Barton ◽  
Anne-Marie Cloutier ◽  
Jean-François Ethier
Keyword(s):  
Health System ◽  
Research Ethics ◽  
Data Use ◽  
Ethics Committee ◽  
Health Data ◽  
Research Ethics Committee ◽  
Secondary Use ◽  
Learning Health System ◽  
Public Perspectives ◽  
Advance Knowledge

A provincial survey was conducted to assess citizens, research ethics committee (REC) members and researchers’ attitude toward information and consent for the secondary use of health data for research within a learning health system (LHS). The results show that: 1) reuse of health data for research to advance knowledge and improve care is values by all parties; 2) consent regarding health data use for research is fundamental particularly to citizens, even when the data are de-identified; 3) a secure website to support the information and consent processes was appreciated by all. Researchers were more comfortable with the use of de-identified health data for research without informing nor seeking consent from people than citizen and REC member respondents. This survey was part of a larger project that aims at exploring public perspectives on alternate approaches to the current consent models in Quebec to take into consideration the unique features of LHS. The revised consent model will need to ensure that citizens are given the opportunity to be better informed about incoming researches with their health data and have their say, when possible, in the use of their data.

scholarly journals Edukasi Sistem Informasi Kesehatan Elektronik Untuk Kader Kesehatan Desa Tijayan Manisrenggo Jawa Tengah

2019 ◽  
Vol 4 (1) ◽  
pp. 9
Author(s):  
MT Ghozali ◽  
Ingenida Hadning ◽  
Aji Winanta
Keyword(s):  
Information System ◽  
Health System ◽  
Health Information ◽  
National Health ◽  
Health Information System ◽  
National Health System ◽  
Health Data ◽  
Health Profile ◽  
Electronic Health ◽  
The Village

ABSTRAKSistem Informasi Kesehatan (SIMKes) merupakan bagian penting dari sistem kesehatan suatu negara. SIMKes adalah bentuk utama Sistem Kesehatan Nasional (SKN) yang digunakan sebagai komponen dalam pembangunan berwawasan kesehatan. Sistem informasi yang tersusun dan terkonsep akan menghasilkan luaran yang baik dan membuat masyarakat tidak buta dengan dunia kesehatan. Teknologi informasi berkembang secara cepat dan berdampak pada semua aspek kehidupan, termasuk informasi kesehatan. Perkembangan teknologi saat ini berperan penting menjadi sebuah media bagi masyarakat milenial atau tenaga kesehatan untuk mendapatkan informasi mengenai gambaran kesehatan dan persebaran penyakit atau epidemiologi di wilayahnya masing-masing. Program Hibah Kemitraan ini bertujuan untuk melatih para kader kesehatan di setiap Padukuhan di Desa Tijayan Manisrenggo Jawa Tengah bagaimana cara membuat profil kesehatan dan peta persebaran penyakit di desa tersebut dan menyajikannya secara interaktif, edukatif, dan berbasis elektronik. Sasaran utama dalam program ini adalah kader kesehatan masing-masing padukuhan yang terdapat di Desa Tijayan, meliputi Bawangan, Candran, Pogaten, dan Sorobayan. Beberapa program kegiatan untuk mencapai tujuan tersebut meliputi pengumpulan data kesehatan yang didapat melalui survey atau sensus dan data yang sudah tersedia di pusat data kesehatan desa, penyuluhan tata cara pembuatan profil kesehatan dan peta persebaran penyakit, dan pelatihan penyajian data informasi kesehatan masyarakat secara interaktif dan edukatif. Program Hibah Kemitraan ini dapat membantu melengkapi profil kesehatan masyarakat dan meningkatkan kualitas SIMKes di desa mitra.Kata kunci: profil kesehatan; sistem informasi kesehatan; sisten kesehatan nasionalABSTRACTHealth Information System (HIS) is an important component of a country's health system. HIS is the main part of the National Health System, which is used as a pillar in health-oriented development. The structured and conceptual information system produces good outcomes and prevents people from the blindness of health matters. Information technology develops rapidly and impacts most of all aspects of life, including health information. Current technological developments play an important role as a media for millennial people or health professionals to get information about health information and epidemiology in their own region. This program aimed to train health cadres in each region of the Tijayan Manisrenggo Village, Klaten, Central Java, in addition to creating an electronic health profile and epidemiology map of the village and then presenting the profile interactively and educatively. The main targets of this program were health cadres in each region of the Tijayan Village, including Bawangan, Candran, Pogaten, and Sorobayan. Some main activities to achieve the objectives included collecting health data obtained through surveys or censuses and data already available in the health data center of the village, counseling procedures for creating an electronic health profile and epidemiology map, as well as training in the interactive and educative presentation of public health information data. This program helped complete the health profile and increase the quality of health information system in the partner villages.Keywords: health information system; health profile; national health system

scholarly journals Public Views on Models for Accessing Genomic and Health Data for Research: Mixed Methods Study

10.2196/14384 ◽  
2019 ◽  
Vol 21 (8) ◽  
pp. e14384 ◽  
Author(s):  
Kerina H Jones ◽  
Helen Daniels ◽  
Emma Squires ◽  
David V Ford
Keyword(s):  
Open Access ◽  
Large Scale ◽  
Genomic Data ◽  
Data Access ◽  
Health Data ◽  
Social Acceptability ◽  
Safe Haven ◽  
Use Of Data ◽  
Lack Of Information ◽  
Public Views

Background The literature abounds with increasing numbers of research studies using genomic data in combination with health data (eg, health records and phenotypic and lifestyle data), with great potential for large-scale research and precision medicine. However, concerns have been raised about social acceptability and risks posed for individuals and their kin. Although there has been public engagement on various aspects of this topic, there is a lack of information about public views on data access models. Objective This study aimed to address the lack of information on the social acceptability of access models for reusing genomic data collected for research in conjunction with health data. Models considered were open web-based access, released externally to researchers, and access within a data safe haven. Methods Views were ascertained using a series of 8 public workshops (N=116). The workshops included an explanation of benefits and risks in using genomic data with health data, a facilitated discussion, and an exit questionnaire. The resulting quantitative data were analyzed using descriptive and inferential statistics, and the qualitative data were analyzed for emerging themes. Results Respondents placed a high value on the reuse of genomic data but raised concerns including data misuse, information governance, and discrimination. They showed a preference for giving consent and use of data within a safe haven over external release or open access. Perceived risks with open access included data being used by unscrupulous parties, with external release included data security, and with safe havens included the need for robust safeguards. Conclusions This is the first known study exploring public views of access models for reusing anonymized genomic and health data in research. It indicated that people are generally amenable but prefer data safe havens because of perceived sensitivities. We recommend that public views be incorporated into guidance on models for the reuse of genomic and health data.

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.

Health Information Technology Spending on the Rise

2018 ◽  
pp. 1-14
Author(s):  
Jinhyung Lee ◽  
Hansil Choi
Keyword(s):  
Information Technology ◽  
Health Information Technology ◽  
Health Information ◽  
Health Planning ◽  
Teaching Hospitals ◽  
Health It ◽  
Factors Affecting ◽  
For Profit ◽  
Not For Profit ◽  
Level Data

In this chapter, the authors track health information technology by examining the factors affecting health information technology (IT) expenditure. The authors employed hospital- and patient-level data of the Office of Statewide Health Planning and Development (OSHPD) from 2000 to 2006. The generalized linear model (GLM) was employed with log link and normal distribution and controlled for clustering error. The authors found that not-for-profit and government hospitals, teaching hospitals, competition, and health IT expenditure of neighborhood hospitals were positively associated with health IT expenditure. However, rural hospitals were negatively associated with health IT expenditure. Moreover, the authors found that mean annual health IT expenditure was approximately $7.4 million from 2000-2006. However, it jumped 204% to $15.1 million from 2008-2014.

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