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Opt-In and Opt-Out Consent Procedures for the Reuse of Routinely Recorded Health Data in Scientific Research and Their Consequences for Consent Rate and Consent Bias: Systematic Review

Opt-In and Opt-Out Consent Procedures for the Reuse of Routinely Recorded Health Data in Scientific Research and Their Consequences for Consent Rate and Consent Bias: Systematic Review

Both a lawful basis for processing, as stated in Article 6(1) of the GDPR, and a special category condition for processing in compliance with Article 9(2) of the GDPR are necessary [8]. In general, consent is the starting point when processing special category data, and consent in the sense of the GDPR must meet a range of requirements: it must be specific, freely given, informed, and unambiguous [8].

Yvonne de Man, Yvonne Wieland-Jorna, Bart Torensma, Koos de Wit, Anneke L Francke, Mariska G Oosterveld-Vlug, Robert A Verheij

J Med Internet Res 2023;25:e42131

Setting up a Governance Framework for Secondary Use of Routine Health Data in Nursing Homes: Development Study Using Qualitative Interviews

Setting up a Governance Framework for Secondary Use of Routine Health Data in Nursing Homes: Development Study Using Qualitative Interviews

Trust in the appropriate and responsible reuse of data plays a pivotal role in determining whether permission is given to reuse the data. Developing and implementing a data governance framework are crucial for enhancing trust [10,11]. An adequate governance framework can be regarded as one of the several pillars of trust. In this study, we define a “data governance framework” as a set of rules and regulations determining who can use the data, for what purposes, and under which conditions.

Yvonne Wieland-Jorna, Robert A Verheij, Anneke L Francke, Marit Tomassen, Max Houtzager, Karlijn J Joling, Mariska G Oosterveld-Vlug

J Med Internet Res 2023;25:e38929

Impact of a Machine Learning–Based Decision Support System for Urinary Tract Infections: Prospective Observational Study in 36 Primary Care Practices

Impact of a Machine Learning–Based Decision Support System for Urinary Tract Infections: Prospective Observational Study in 36 Primary Care Practices

Pacmed, a Dutch organization developing and implementing ML-based decision support in health care, developed, together with the consortium that conducted this research, a CDSS to aid GPs with the treatment choice for patients with a UTI. On the basis of the EHR data from UTI observations in the Nivel Primary Care Database, ML-based classifiers were constructed to estimate the probability of success of the 8 antibiotics commonly used for an individual patient with a UTI.

Willem Ernst Herter, Janine Khuc, Giovanni Cinà, Bart J Knottnerus, Mattijs E Numans, Maryse A Wiewel, Tobias N Bonten, Daan P de Bruin, Thamar van Esch, Niels H Chavannes, Robert A Verheij

JMIR Med Inform 2022;10(5):e27795

Electronic Health Record–Triggered Research Infrastructure Combining Real-world Electronic Health Record Data and Patient-Reported Outcomes to Detect Benefits, Risks, and Impact of Medication: Development Study

Electronic Health Record–Triggered Research Infrastructure Combining Real-world Electronic Health Record Data and Patient-Reported Outcomes to Detect Benefits, Risks, and Impact of Medication: Development Study

Moreover, in countries where primary care has a gatekeeper function, patients’ primary care EHR holds a complete record of morbidity and medication of a defined list of patients (most gatekeeping systems are also list systems, where general practitioner [GP] practices have a defined list of patients that they are supposed to care for), and thus, it provides an excellent opportunity to assess the benefit-risk balance of medication when complemented with PROs.

Karin Hek, Leàn Rolfes, Eugène P van Puijenbroek, Linda E Flinterman, Saskia Vorstenbosch, Liset van Dijk, Robert A Verheij

JMIR Med Inform 2022;10(3):e33250

Estimating Morbidity Rates Based on Routine Electronic Health Records in Primary Care: Observational Study

Estimating Morbidity Rates Based on Routine Electronic Health Records in Primary Care: Observational Study

Many European countries, including the Netherlands and the United Kingdom, already have a long history of using EHRs of GPs as a data source for morbidity estimates [1,2,4-6]. The extent to which EHRs of GPs are a valid data source to assess the health status of the general population depends on how primary care is organized in a country.

Mark MJ Nielen, Inge Spronk, Rodrigo Davids, Joke C Korevaar, René Poos, Nancy Hoeymans, Wim Opstelten, Marianne AB van der Sande, Marion CJ Biermans, Francois G Schellevis, Robert A Verheij

JMIR Med Inform 2019;7(3):e11929

Possible Sources of Bias in Primary Care Electronic Health Record Data Use and Reuse

Possible Sources of Bias in Primary Care Electronic Health Record Data Use and Reuse

These developments provide a foundation for using routine EHRs in support of a “learning health system” (LHS) [21,22]. An LHS is a system in which knowledge generation and reapplication is a natural product of the health care delivery process and leads to continuous improvement in outcomes and institutional performance [23].

Robert A Verheij, Vasa Curcin, Brendan C Delaney, Mark M McGilchrist

J Med Internet Res 2018;20(5):e185