The next frontier: Fostering innovation by improving health data access and utilization

Oye, KA; Jain, Geetika; Amador, Michelle González; Arnaout, Ramy; Brown, Jeffrey S.; Crown, William H.; Ferguson, John; Pezalla, Edmund J.; Rassen, Jeremy A.; Selker, HP; Trusheim, Mark R.; Hirsch, Gigi

doi:10.1002/cpt.191

Cited by 25 publications

(3 citation statements)

References 12 publications

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“…provide useful stakeholder inputs on the novel concepts around adaptive licensing and conditional approval pathways have been the subject of previous publications in this journal . As access and coverage for new therapies is a roiling scientific and political topic, we felt it useful to include some contemporary perspectives on healthcare technology assessment, which has also been previously featured in CPT . Also included is a comprehensive review of structured benefit–risk frameworks that are currently being developed to inform drug development and regulatory decision making …”

Section: Neuroscience At the Tipping Pointmentioning

confidence: 99%

Pharmacotherapy for Neurodegenerative Diseases: Are We Approaching the Tipping Point?

Honig¹

2015

Clin Pharma and Therapeutics

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Neurodegenerative diseases continue to represent major unmet medical and public health needs and will increasingly strain the healthcare system as people live longer due to medical advances in other diseases. Hopefully the emergence of increased understanding of the biology of these conditions coupled with novel clinical pharmacology tools, clinical trial designs, and regulatory innovation will allow the emergence of highly effective symptomatic and disease modifying pharmacotherapies.

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Section: Neuroscience At the Tipping Pointmentioning

confidence: 99%

Pharmacotherapy for Neurodegenerative Diseases: Are We Approaching the Tipping Point?

Honig¹

2015

Clin Pharma and Therapeutics

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“…Poor interoperability of electronic health record (EHR) systems further hampers efforts to share and standardize data. 9–12 Owing to these difficulties, researchers may rely on arrangements with EHR providers or hospital systems to obtain analyzable data. However, this approach limits data set completeness because data capture is restricted, for example, to care sites using a particular EHR system.…”

Section: Introductionmentioning

confidence: 99%

Generating real-world data from health records: design of a patient-centric study in multiple sclerosis using a commercial health records platform

Hanson¹,

Chitnis

Williams³

et al. 2022

JAMIA Open

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Objective The FlywheelMS study will explore the use of a real-world health record data set generated by PicnicHealth, a patient-centric health records platform, to improve understanding of disease course and patterns of care for patients with multiple sclerosis (MS). Materials and Methods The FlywheelMS study aims to enroll 5000 adults with MS in the United States to create a large, deidentified, longitudinal data set for clinical research. PicnicHealth obtains health records, including paper charts, electronic health records, and radiology imaging files from any healthcare site. Using a large-scale health record processing pipeline, PicnicHealth abstracts standard and condition-specific data elements from structured (eg, laboratory test results) and unstructured (eg, narrative) text and maps these to standardized medical vocabularies. Researchers can use the resulting data set to answer empirical questions and study participants can access and share their harmonized health records using PicnicHealth’s web application. Results As of November 24, 2020, more than 4176 participants from 49 of 50 US states have enrolled in the FlywheelMS study. A median of 200 pages of records have been collected from 14 different doctors over 8 years per participant. Abstraction precision, established through inter-abstractor agreement, is as high as 97.8% when identifying and mapping data elements to a standard ontology. Conclusion Using a commercial health records platform, the FlywheelMS study is generating a real-world, multimodal data set that could provide valuable insights about patients with MS. This approach to data collection and abstraction is disease-agnostic and could be used to address other clinical research questions in the future.

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“…For example, it has been debated whether the improved outcome of acute kidney injury over the last decades is a real improvement or just a bias induced by a creeping of the definition in administrative datasets [ 10 ]. Moreover, setting up collaborative data networks poses additional challenges related to interoperability and data harmonization [ 11 ]. Data coming from different sources should first be harmonized and aligned to a common data model before they can be used for analysis or knowledge generation.…”

Section: Introductionmentioning

confidence: 99%

The concept of justifiable healthcare and how big data can help us to achieve it

Biesen

Straeten

Sterckx

et al. 2021

BMC Med Inform Decis Mak

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Over the last decades, the face of health care has changed dramatically, with big improvements in what is technically feasible. However, there are indicators that the current approach to evaluating evidence in health care is not holistic and hence in the long run, health care will not be sustainable. New conceptual and normative frameworks for the evaluation of health care need to be developed and investigated. The current paper presents a novel framework of justifiable health care and explores how the use of artificial intelligence and big data can contribute to achieving the goals of this framework.

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The next frontier: Fostering innovation by improving health data access and utilization

Cited by 25 publications

References 12 publications

Pharmacotherapy for Neurodegenerative Diseases: Are We Approaching the Tipping Point?

Pharmacotherapy for Neurodegenerative Diseases: Are We Approaching the Tipping Point?

Generating real-world data from health records: design of a patient-centric study in multiple sclerosis using a commercial health records platform

The concept of justifiable healthcare and how big data can help us to achieve it

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