Access to linked data: challenges and progress

Flack, Felicity; Smith, Margery A.

doi:10.1111/imj.14455

Cited by 3 publications

(7 citation statements)

References 4 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…One approach to health research that has contributed significantly to health improvements over the past 30 years focuses on the use of population-level data routinely collected when individuals interact with the health system, which contain individual-level information on healthcare services use (e.g., hospitalizations, prescription drug dispensations) and demographics [3,4]. Using these data for multi-jurisdictional research, defined as research that accesses data from more than one jurisdiction, can overcome some of the limitations of single jurisdiction studies (e.g., studying rare conditions, or comparing health care system outcomes), but it does not come without challenges [5][6][7][8]. Addressing the challenges is acknowledged as a necessary step towards facilitating this type of research as various countries are developing the infrastructure to overcome them [7][8][9][10][11].…”

Section: Introductionmentioning

confidence: 99%

“…Using these data for multi-jurisdictional research, defined as research that accesses data from more than one jurisdiction, can overcome some of the limitations of single jurisdiction studies (e.g., studying rare conditions, or comparing health care system outcomes), but it does not come without challenges [5][6][7][8]. Addressing the challenges is acknowledged as a necessary step towards facilitating this type of research as various countries are developing the infrastructure to overcome them [7][8][9][10][11].…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

The SPOR-Canadian Data Platform: a national initiative to facilitate data rich multi-jurisdictional research

Dahl

Katz

McGrail

et al. 2020

IJPDS

View full text Add to dashboard Cite

Administrative health data is recognized for its value for conducting population-based research that has contributed to numerous improvements in health. In Canada, each province and territory is responsible for administering its own publicly funded health care program, which has resulted in multiple sets of administrative health data. Challenges to using these data within each of these jurisdictions have been identified, which are further amplified when the research involves more than one jurisdiction. The benefits to conducting multi-jurisdictional studies has been recognized by the Canadian Institutes of Health Research (CIHR), which issued a call in 2017 for proposals that address the challenges. The grant led to the creation of Health Data Research Network Canada (HDRN), with a vision is to establish a distributed network that facilitates and accelerates multi-jurisdictional research in Canada. HDRN received funding for seven years that will be used to support the objectives and activities of an initiative called the Strategy for Patient-Oriented Research Canadian Data Platform (SPOR-CDP). In this paper, we describe the challenges that researchers face while using, or considering using, administrative health data to conduct multi-jurisdictional research and the various ways that the SPOR-CDP will attempt to address them. Our objective is to assist other groups facing similar challenges associated with undertaking multi-jurisdictional research.

show abstract

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

The SPOR-Canadian Data Platform: a national initiative to facilitate data rich multi-jurisdictional research

Dahl

Katz

McGrail

et al. 2020

IJPDS

View full text Add to dashboard Cite

show abstract

“…We welcome the Population Health Research Network (PHRN) collaborative's initiatives in establishing a streamlined and unified application process in multi‐jurisdictional data linkage projects, and we fully support their vision. We acknowledge the concerns raised by Flack and Smith and take this opportunity to elaborate.…”

mentioning

confidence: 99%

“…First, Flack and Smith refer to the coordinated online application process. However, even at the time of writing this reply, this application process is not universally accepted by several large jurisdictions who still require their own application to be completed.…”

mentioning

confidence: 99%

See 1 more Smart Citation

Author reply

Palamuthusingam

Johnson

Hawley

et al. 2019

Internal Medicine Journal

View full text Add to dashboard Cite

Challenges and opportunities for using population health data to investigate cancer survivors’ quality of life in Australia

et al. 2022

View full text Add to dashboard Cite

There is a recognised need for reported national data that inform health policy, health professions, and consumers about the wellbeing of Australians with cancer and other chronic conditions. International initiatives have demonstrated the viability and benefits of utilising population-based cancer registries to monitor the prevalence and trajectory of health-related quality of life (HRQOL) outcomes among people with cancer. Establishing a similar level of monitoring in Australia would require timely access to health data collected by publicly funded, population-based cancer registries, and the capacity to link this information across jurisdictions. Combining information from different sources via data linkage is an efficient and cost-effective way to maximise how data are used to inform population health and policy development. However, linking health datasets has historically been highly restricted, resource-intensive, and costly in Australia due to complex and outdated legislative requirements, duplicative approval processes, and differing policy frameworks in each state and territory. This has resulted in significant research waste due to underutilisation of existing data, duplication of research efforts and resources, and data not being translated into decision-making. Recognising these challenges, from 2015 to 2017 the Productivity Commission investigated options for improving data availability and use in Australia, considering factors such as privacy, security, and intellectual property. The inquiry report recommended significant reforms for Australian legislation, including the creation of a data sharing and release structure to improve access to data for research and policy development purposes. This paper discusses (1) opportunities in HRQOL research enabled by data linkage, (2) barriers to data access and use in Australia and the implications for waste in HRQOL research, and (3) proposed legislative reforms for improving data availability and use in Australia.

show abstract

Access to linked data: challenges and progress

Cited by 3 publications

References 4 publications

The SPOR-Canadian Data Platform: a national initiative to facilitate data rich multi-jurisdictional research

The SPOR-Canadian Data Platform: a national initiative to facilitate data rich multi-jurisdictional research

Author reply

Challenges and opportunities for using population health data to investigate cancer survivors’ quality of life in Australia

Contact Info

Product

Resources

About