Standardising socio-demographic data collection in pain research: Introducing consensus recommendations for a minimum dataset - 03/01/26

Doi : 10.1016/j.jpain.2025.105645

Emma L. Karran ^a,^b,^{^{a
www.unisa.edu.au.},}^⁎ , Aidan G. Cashin ^a,^c,^d,^{^{b
denotes equal contributions (AGC, AC and SS).}}, Alessandro Chiarotto ^a,^e,^{^{b
denotes equal contributions (AGC, AC and SS).}}, Saurab Sharma ^a,^c,^d,^f,^g,^{^{b
denotes equal contributions (AGC, AC and SS).}}, Trevor Barker ^a,^b, Mark A. Boyd ^a,^h,ⁱ, Lara J. Maxwell ^a,^j,^k, Vina Mohabir ^a,^l,^{^{b
denotes equal contributions (AGC, AC and SS).}}, Jennifer Petkovic ^a,^m,^n,^o, Peter Tugwell ^a,^j,^m,^n,^o, G. Lorimer Moseley ^a,^b
^a The ‘Identifying Social Factors that Stratify Health Opportunities and Outcomes’ (ISSHOOS) Collaboration Core Research Group, Australia
^b IIMPACT in Health, University of South Australia, Kaurna Country, Adelaide, South Australia, Australia
^c Centre for Pain IMPACT, Neuroscience Research Australia, Sydney, New South Wales, Australia
^d School of Health Sciences, Faculty of Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia
^e Department of General Practice, Erasmus MC, University Medical Center, Rotterdam, the Netherlands
^f Pain Management and Research Centre, Royal North Shore Hospital, Northern Sydney Local Health District, Sydney, New South Wales, Australia
^g Pain Management Research Institute, Kolling Institute, Faculty of Medicine and Health, The University of Sydney and Northern Sydney Local Health District, Sydney, New South Wales, Australia
^h Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, South Australia, Australia
ⁱ Northern Adelaide Local Health Network, South Australia, Australia
^j Ottawa Hospital Research Institute, Methodological and Implementation Research, Ottawa, Canada
^k University of Ottawa, Faculty of Medicine, Department of Medicine, Ottawa, Canada
^l Child Health Evaluative Sciences, Peter Gilgan Centre for Research and Learning, The Hospital for Sick Children, Toronto, Ontario, Canada
^m WHO Collaborating Centre for Knowledge Translation and Health Technology Assessment in Health Equity, Bruyere Health Research Institute, Ottawa, Canada
ⁿ University of Ottawa, Department of Medicine, Faculty of Medicine, Ottawa, Canada
^o University of Ottawa, School of Epidemiology and Public Health, Faculty of Medicine, Ottawa, Canada

^⁎Corresponding author at: University of South Australia, Kaurna Country, GPO Box 2471, Adelaide, South Australia, AustraliaUniversity of South Australia, Kaurna CountryGPO Box 2471AdelaideSouth AustraliaAustralia

Sous presse. Épreuves corrigées par l'auteur. Disponible en ligne depuis le Saturday 03 January 2026

Abstract

The ‘ISSHOOs (Identifying Social factors that Stratify Health Opportunities and Outcomes) in pain research’ project has developed consensus-derived recommendations to address the inadequacy and inconsistency of socio-demographic data collection and reporting in human adult pain research. The recently published recommendations offer a highly useful, globally relevant and adaptable resource that operationalises the collection of a minimum dataset of important equity-relevant information. In this Commentary we provide a brief overview of the ISSHOOs project and the resulting recommendations – comprising Set A: the ‘minimum dataset’ and Set B: an extended dataset of optional (equity-relevant) items; and we draw attention to a separate ‘explanation and elaboration’ manuscript. We discuss the implications of routine adoption of the ISSHOOs recommendations, including limitations, implementation considerations, and the potential for both benefits and harms to be associated with their use. The overarching goal of the ISSHOOs Collaboration is to prompt a small but widespread shift in research practice that promotes research transparency, integrity and value and advances health equity for people with pain.

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Highlights

•	Inadequately reporting socio-demographic data perpetuates the invisibility of health inequities.
•	The ‘ISSHOOs’ collaboration provides consensus derived recommendations on a minimum dataset.
•	Widespread, consistent implementation will advance crucial equity considerations in pain research.

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Keywords : Pain, Health equity, Social determinants of health, Sociodemographic data, Minimum dataset