Towards best practice recommendations: perspectives from Australian GPs to inform the use of general practice data for research – a modified Delphi study

Heidi Green; Justin Beilby; Chris Degeling; Carolyn Adams; Felicity Flack; Lucy Carolan; Belinda Fabrianesi; Anthony Brown; Alberto Nettel Aguirre; Allison Clarke; Christian Jung; Annette Braunack-Mayer

doi:10.1080/13814788.2025.2601396

Towards best practice recommendations: perspectives from Australian GPs to inform the use of general practice data for research – a modified Delphi study

Heidi Green^*, Justin Beilby, Chris Degeling, Carolyn Adams, Felicity Flack, Lucy Carolan, Belinda Fabrianesi, Anthony Brown, Alberto Nettel Aguirre, Allison Clarke, Christian Jung, Annette Braunack-Mayer

^*Corresponding author for this work

Macquarie Law School

Research output: Contribution to journal › Article › peer-review

Abstract

Background: General practice medical records offer significant potential for secondary use in research, policy and public health. In Australia, these data remain underused due to concerns around privacy, governance and ethical use. Understanding the perspectives of GPs is essential to developing best practice recommendations for responsible data use.

Method: A three-round modified Delphi study was conducted with 22 Australian GPs with experience in research and/or data sharing. Participants rated and commented on 11 recommendations derived from community juries, with consensus defined as ≥75% agreement. Feedback summaries and thematic analysis informed subsequent rounds.

Results: Consensus was reached on 10 of 11 recommendations. The panel supported ethical approval, transparency, protection of the doctor–patient relationship and remuneration for practices contributing data. An opt-out approach to consent was endorsed under strict conditions, with clear distinctions made between vulnerable and non-vulnerable populations. The panel also supported the establishment of a governance body and researcher cybersecurity training. However, no consensus was reached on community involvement in research design, despite its growing recognition as best practice by funding bodies.

Conclusion: This study highlights the need for a nationally agreed remuneration model for general practices that contribute data, clearer ethical guidance for engaging vulnerable populations and reform of statutory frameworks to support responsible data use. The lack of consensus on community involvement is concerning, especially as initiatives such as the Australian Institute of Health and Welfare (AIHW) and Primary Health Networks (PHN) partnership advance national data standards. Bridging this gap is essential to align professional practice with public expectations and ensure inclusive, ethically robust research.

Original language	English
Article number	2601396
Pages (from-to)	1-11
Number of pages	11
Journal	European Journal of General Practice
Volume	32
Issue number	1
DOIs	https://doi.org/10.1080/13814788.2025.2601396
Publication status	Published - 2026

Bibliographical note

Copyright the Author(s) 2026. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

Keywords

data sharing
Delphi
general practice
general practitioner
secondary data use

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10.1080/13814788.2025.2601396

Publisher version (open access)Final published version, 671 KBLicence: CC BY-NC

Cite this

Green, H., Beilby, J., Degeling, C., Adams, C., Flack, F., Carolan, L., Fabrianesi, B., Brown, A., Nettel Aguirre, A., Clarke, A., Jung, C., & Braunack-Mayer, A. (2026). Towards best practice recommendations: perspectives from Australian GPs to inform the use of general practice data for research – a modified Delphi study. European Journal of General Practice, 32(1), 1-11. Article 2601396. https://doi.org/10.1080/13814788.2025.2601396

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title = "Towards best practice recommendations: perspectives from Australian GPs to inform the use of general practice data for research – a modified Delphi study",

abstract = "Background: General practice medical records offer significant potential for secondary use in research, policy and public health. In Australia, these data remain underused due to concerns around privacy, governance and ethical use. Understanding the perspectives of GPs is essential to developing best practice recommendations for responsible data use.Method: A three-round modified Delphi study was conducted with 22 Australian GPs with experience in research and/or data sharing. Participants rated and commented on 11 recommendations derived from community juries, with consensus defined as ≥75\% agreement. Feedback summaries and thematic analysis informed subsequent rounds.Results: Consensus was reached on 10 of 11 recommendations. The panel supported ethical approval, transparency, protection of the doctor–patient relationship and remuneration for practices contributing data. An opt-out approach to consent was endorsed under strict conditions, with clear distinctions made between vulnerable and non-vulnerable populations. The panel also supported the establishment of a governance body and researcher cybersecurity training. However, no consensus was reached on community involvement in research design, despite its growing recognition as best practice by funding bodies.Conclusion: This study highlights the need for a nationally agreed remuneration model for general practices that contribute data, clearer ethical guidance for engaging vulnerable populations and reform of statutory frameworks to support responsible data use. The lack of consensus on community involvement is concerning, especially as initiatives such as the Australian Institute of Health and Welfare (AIHW) and Primary Health Networks (PHN) partnership advance national data standards. Bridging this gap is essential to align professional practice with public expectations and ensure inclusive, ethically robust research.",

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note = "Copyright the Author(s) 2026. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.",

year = "2026",

doi = "10.1080/13814788.2025.2601396",

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Green, H, Beilby, J, Degeling, C, Adams, C, Flack, F, Carolan, L, Fabrianesi, B, Brown, A, Nettel Aguirre, A, Clarke, A, Jung, C & Braunack-Mayer, A 2026, 'Towards best practice recommendations: perspectives from Australian GPs to inform the use of general practice data for research – a modified Delphi study', European Journal of General Practice, vol. 32, no. 1, 2601396, pp. 1-11. https://doi.org/10.1080/13814788.2025.2601396

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T2 - perspectives from Australian GPs to inform the use of general practice data for research – a modified Delphi study

AU - Green, Heidi

AU - Beilby, Justin

AU - Degeling, Chris

AU - Adams, Carolyn

AU - Flack, Felicity

AU - Carolan, Lucy

AU - Fabrianesi, Belinda

AU - Brown, Anthony

AU - Nettel Aguirre, Alberto

AU - Clarke, Allison

AU - Jung, Christian

AU - Braunack-Mayer, Annette

N1 - Copyright the Author(s) 2026. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

PY - 2026

Y1 - 2026

N2 - Background: General practice medical records offer significant potential for secondary use in research, policy and public health. In Australia, these data remain underused due to concerns around privacy, governance and ethical use. Understanding the perspectives of GPs is essential to developing best practice recommendations for responsible data use.Method: A three-round modified Delphi study was conducted with 22 Australian GPs with experience in research and/or data sharing. Participants rated and commented on 11 recommendations derived from community juries, with consensus defined as ≥75% agreement. Feedback summaries and thematic analysis informed subsequent rounds.Results: Consensus was reached on 10 of 11 recommendations. The panel supported ethical approval, transparency, protection of the doctor–patient relationship and remuneration for practices contributing data. An opt-out approach to consent was endorsed under strict conditions, with clear distinctions made between vulnerable and non-vulnerable populations. The panel also supported the establishment of a governance body and researcher cybersecurity training. However, no consensus was reached on community involvement in research design, despite its growing recognition as best practice by funding bodies.Conclusion: This study highlights the need for a nationally agreed remuneration model for general practices that contribute data, clearer ethical guidance for engaging vulnerable populations and reform of statutory frameworks to support responsible data use. The lack of consensus on community involvement is concerning, especially as initiatives such as the Australian Institute of Health and Welfare (AIHW) and Primary Health Networks (PHN) partnership advance national data standards. Bridging this gap is essential to align professional practice with public expectations and ensure inclusive, ethically robust research.

AB - Background: General practice medical records offer significant potential for secondary use in research, policy and public health. In Australia, these data remain underused due to concerns around privacy, governance and ethical use. Understanding the perspectives of GPs is essential to developing best practice recommendations for responsible data use.Method: A three-round modified Delphi study was conducted with 22 Australian GPs with experience in research and/or data sharing. Participants rated and commented on 11 recommendations derived from community juries, with consensus defined as ≥75% agreement. Feedback summaries and thematic analysis informed subsequent rounds.Results: Consensus was reached on 10 of 11 recommendations. The panel supported ethical approval, transparency, protection of the doctor–patient relationship and remuneration for practices contributing data. An opt-out approach to consent was endorsed under strict conditions, with clear distinctions made between vulnerable and non-vulnerable populations. The panel also supported the establishment of a governance body and researcher cybersecurity training. However, no consensus was reached on community involvement in research design, despite its growing recognition as best practice by funding bodies.Conclusion: This study highlights the need for a nationally agreed remuneration model for general practices that contribute data, clearer ethical guidance for engaging vulnerable populations and reform of statutory frameworks to support responsible data use. The lack of consensus on community involvement is concerning, especially as initiatives such as the Australian Institute of Health and Welfare (AIHW) and Primary Health Networks (PHN) partnership advance national data standards. Bridging this gap is essential to align professional practice with public expectations and ensure inclusive, ethically robust research.

KW - data sharing

KW - Delphi

KW - general practice

KW - general practitioner

KW - secondary data use

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SN - 1381-4788

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JO - European Journal of General Practice

JF - European Journal of General Practice

IS - 1

M1 - 2601396

ER -

Towards best practice recommendations: perspectives from Australian GPs to inform the use of general practice data for research – a modified Delphi study

Abstract

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Keywords

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