Identifying Social factors that Stratify Health Opportunities and Outcomes (ISSHOOs) in pain research: consensus recommendations for the collection and reporting of equity-relevant data

Emma L Karran^{1

2}, Aidan G Cashin^{1

3

4}, Alessandro Chiarotto^{1

5}, Saurab Sharma^{1

3

4

6

7}, Trevor Barker^{1

2}, Mark A Boyd^{1

8

9}, Lara J Maxwell^{1

10

11}, Vina Mohabir^{1

12}, Jennifer Petkovic^{1

13

14

15}, Peter Tugwell^{1

10

13

14

15}, G Lorimer Moseley^{1

2}; ISSHOOs Group

Collaborators, Affiliations

Affiliations

¹ The 'Identifying Social Factors that Stratify Health Opportunities and Outcomes' (ISSHOOS) Collaboration Core Research Group.
² IIMPACT in Health, University of South Australia, Kaurna Country, Adelaide, South Australia, Australia.
³ Centre for Pain IMPACT, Neuroscience Research Australia, Sydney, New South Wales, Australia.
⁴ School of Health Sciences, Faculty of Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia.
⁵ Department of General Practice, Erasmus MC, University Medical Center, Rotterdam, the Netherlands.
⁶ Pain Management and Research Centre, Royal North Shore Hospital, Northern Sydney Local Health District, Sydney, New South Wales, Australia.
⁷ 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.
⁸ Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, South Australia, Australia.
⁹ Northern Adelaide Local Health Network, South Australia, Australia.
¹⁰ Ottawa Hospital Research Institute, Methodological and Implementation Research, Ottawa, Canada.
¹¹ Faculty of Medicine, Department of Medicine, University of Ottawa, Ottawa, Canada.
¹² Child Health Evaluative Sciences, Peter Gilgan Centre for Research and Learning, The Hospital for Sick Children, Toronto, Ontario, Canada.
¹³ WHO Collaborating Centre for Knowledge Translation and Health Technology Assessment in Health Equity, Bruyere Health Research Institute, Ottawa, Canada.
¹⁴ Department of Medicine, Faculty of Medicine, University of Ottawa, Ottawa, Canada.
¹⁵ University of Ottawa, School of Epidemiology and Public Health, Faculty of Medicine, Ottawa, Canada.

PMID: 41209654
PMCID: PMC12595279
DOI: 10.1016/j.eclinm.2025.103586

Identifying Social factors that Stratify Health Opportunities and Outcomes (ISSHOOs) in pain research: consensus recommendations for the collection and reporting of equity-relevant data

Emma L Karran et al. EClinicalMedicine. 2025.

. 2025 Oct 24:90:103586.

doi: 10.1016/j.eclinm.2025.103586. eCollection 2025 Dec.

Authors

Affiliations

¹ The 'Identifying Social Factors that Stratify Health Opportunities and Outcomes' (ISSHOOS) Collaboration Core Research Group.
² IIMPACT in Health, University of South Australia, Kaurna Country, Adelaide, South Australia, Australia.
³ Centre for Pain IMPACT, Neuroscience Research Australia, Sydney, New South Wales, Australia.
⁴ School of Health Sciences, Faculty of Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia.
⁵ Department of General Practice, Erasmus MC, University Medical Center, Rotterdam, the Netherlands.
⁶ Pain Management and Research Centre, Royal North Shore Hospital, Northern Sydney Local Health District, Sydney, New South Wales, Australia.
⁷ 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.
⁸ Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, South Australia, Australia.
⁹ Northern Adelaide Local Health Network, South Australia, Australia.
¹⁰ Ottawa Hospital Research Institute, Methodological and Implementation Research, Ottawa, Canada.
¹¹ Faculty of Medicine, Department of Medicine, University of Ottawa, Ottawa, Canada.
¹² Child Health Evaluative Sciences, Peter Gilgan Centre for Research and Learning, The Hospital for Sick Children, Toronto, Ontario, Canada.
¹³ WHO Collaborating Centre for Knowledge Translation and Health Technology Assessment in Health Equity, Bruyere Health Research Institute, Ottawa, Canada.
¹⁴ Department of Medicine, Faculty of Medicine, University of Ottawa, Ottawa, Canada.
¹⁵ University of Ottawa, School of Epidemiology and Public Health, Faculty of Medicine, Ottawa, Canada.

PMID: 41209654
PMCID: PMC12595279
DOI: 10.1016/j.eclinm.2025.103586

Abstract

Background: The aspiration to improve health equity is fundamental to scholarly focus and action in public health, and highly relevant to addressing the global burden of pain-the leading contributor to disability worldwide. There is potential for advancement towards health equity to be facilitated by greater access to data that identifies the role of socio-demographic factors in pain and health outcomes.

Methods: The 'Identifying Social factors that Stratify Health Opportunities and Outcomes (ISSHOOs) in Pain Research' project was a multi-stage process that aimed to reach consensus on the most important equity-relevant items to include in all human adult pain research. Conducted April 2022-May 2025, it incorporated two scoping reviews (published 2023), an international Delphi study (published 2025), consensus meetings and focus groups; prioritising global participation, patient perspectives, and interdisciplinary expertise throughout.

Findings: Three hundred and four individuals from 45 countries, across six continents, contributed to developing two sets of items. Set A, the 'minimum dataset', is a globally relevant set of eight standardised socio-demographic items (age, sex, gender identity, place, race/ethnicity/cultural identity, education, financial position, work status), accompanied by concise guidance to assist implementation and setting-specific tailoring; Set B is an 'extended dataset' of optional items from which researchers can select items consistent with their study population and research questions. The ISSHOOs recommendations offer a culturally sensitive, cross-culturally relevant, practical and highly useful resource.

Interpretation: Routine adoption and clear reporting of the ISSHOOs datasets across all human adult pain research will lead to improved and harmonious descriptions of research participants across health equity domains. Our goal is to promote equity-relevant awareness and understanding, and ultimately drive progress towards reducing avoidable disparities in health for people with pain, with potential for broader application to other fields of health.

Funding: NHMRC (Australia); MAYDAY Fund; IASP; Canada Research Chair Program; European Horizon 2020 Research and Innovation Programme; ZonMw programs.

Keywords: Health equity; Pain; Recommendations; Reporting; Social determinants of health; Sociodemographic characteristics.

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Conflict of interest statement

All authors have completed the ICMJE uniform disclosure form and declare: Core Research Group: ELK has received support from the National Health and Medical Research Council (NHMRC) Australia and is currently supported by The Mayday Fund. ELK has received speaker fees for lectures on pain and rehabilitation from professional and scientific bodies, and reimbursement of travel costs related to presentations at scientific conferences/symposia. ELK is an unpaid member of The International Association for the Study of Pain (IASP) Global Year 2025 on the theme of “Pain Management, Research, and Education in Low/Middle-Income Settings”, the IASP, and the Australian Pain Society. AC is supported by grants from the European Horizon 2020 Research and Innovation Programme (Europe), the ZonMw Huisartsgeneeskunde en Ouderengeneeskunde (HGOG) Programme and the ZonMw Goed Gebruik Geneesmiddelen (GGG) Programme (The Netherlands). SS was supported by the John J. Bonica Postdoctoral Fellowship from the IASP (2021–2023). The IASP did not have any influence on Dr Sharma's research. SS has received funding grant from the Medical Research Future Fund, the ANZ Back Pain Clinical Trials Networks and the National Health and Medical Research Council (NHMRC). SS has received financial support for travel costs related to presentations at scientific conferences, and renumeration for delivery of online lectures. SS has unpaid relationships with the following entities: SS is a board member for the Pain, Mind, and Movement Special Interest Group of the IASP, and the IASP Global Alliance for Partners in Pain Advocacy (GAPPA). SS is a trainee Editor for Pain Research Forum of the IASP and an Associate Editor for (1) the Journal of Orthopaedic & Sports Physical Therapy and (2) Physiotherapy. SS is Co-chair of The IASP Global Year 2025 on the theme of “Pain Management, Research, and Education in Low/Middle-Income Settings”. SS is a member of the IASP, Nepal Physiotherapy Association, and Australian Pain Society. PT has received consulting fees to provide independent medical consultation and professional services. He is an independent Committee Member for clinical trial Data Safety Monitoring Boards for FDA approved trials being conducted by UCB Biopharma GmbH & SPRL, Parexel International, Prahealth Sciences. PT is an [unpaid] Chair of the Management Subcommittee of the Executive Committee of a registered non-profit independent medical research organisation, OMERACT. GLM has received funding support from the NHMRC. GLM has received book royalties from books on pain and education from: NOIgroup publications; Dancing Giraffe Press; OPTP. GLM has received consulting fees from various sporting organisations; workers’ compensation boards; ConnectHealth UK; IOH California; Reality Health. He has received speaker fees for lectures on pain, pain education and rehabilitation from various professional societies; and travel and accommodation support for attendance at scientific meetings from Reality Health. GLM is an (unpaid) board member of the Australian Pain Solutions Alliance and has unpaid scientific advisor roles with the CRPS network and RSDSA. The ISSHOOs Group: OA is a voluntary member of The International Association for the Study of Pain (IASP) Global Year 2025 on the theme of “Pain Management, Research, and Education in Low/Middle-Income Settings”, a voluntary member of the Global Alliance of Partners for Pain Advocacy (GAPPA), Sickle Cell Disease Ambassador for Rare Disease South Africa, and Member of the Sickle Cell Disease Coalition (SCDC) for the American Society of Haematology (ASH). DB has received payments and honoraria for lectures/presentations from Grunenthal. MC has received grant support from the National Agency R&D Chile, and payments for lectures/presentations from Grunenthal Latin America. MC has unpaid roles on the IASP Council and as NeuPSIG Secretary. MC (Cowern) has a paid leadership role as Head of Nations at UK Charity Versus Arthritis and an unpaid role as OMERACT PRP Support Team member. BMF received support for attending European Pain Federation (EFIC) European Congresses while in her role as President of EFIC (2020–2023). CH has received speaker payments from THINC Grant (CIHR) and received a stipend from OMERACT to attend bi-annual conferences. CH has a role in the Management Group at OMERACT. FK has received grant support from MASS Pain Study in NC (2023–2024) and The BACk Study (2024-present). FK has received payments for delivering workshops and webinars associated with the NIH HEAL Initiative and has received travel support to attend national and international conferences/symposia from professional organisations (USASP, IASP, ACTTION, QPRN). FK held the role of treasurer of the International Network for Orofacial pain and Related disorders Methodology (INfORM) (2020–2023). DL has received salary support from the HSS Dept of Anaesthesiology, Critical Care & Pain Management Research & Education Fund, and has received grant support from the NIH. DL has received travel support and payments for lectures/presentations from Analgesic, Anaesthetic, and Addiction Clinical Trials, Translations, Innovations and Opportunities Network (ACTTION). BLT has received grant support from the Health Research Council, New Zealand; Medical Research Future Fund (Australia); and the Canadian Chiropractic Research Foundation. BL has received support to attend meetings at the University of Otago and holds a role in the Lived Experience Advisory Panel, NZ Pain Society. BLT writes the blog https://healthskills.wordpress.com and runs educational courses for health professionals in New Zealand. JL has received annual payments from the Faculty for Honours Pain Course at University of Washington over the past decade. TP has received grant/contract funding from the NIH; has received royalties from Oxford University Press and consulting fees from TriveniBio. TP is Editor-in-Chief, Journal of Pain. RP has received grants to attend and participate in international research meetings from National Research Foundation of South Africa Knowledge, Interchange and Collaboration Grants (KIC23032487234; KIC240314209107; KIC24082824087). RP has received payment for lecturing on pain and pain management from Train Pain Academy not for profit organisation (South Africa), and payment for a webinar on pain from Heleon South Africa. RP is a councillor and fiduciary officer of IASP. ASCR has received grants from UKRI (Medical Research Council & BBSRC), Versus Arthritis, Alan and Sheila Diamond Trust, Royal British Legion, European Commission, Ministry of Defence, Dr Jennie Gwynn Bequests, The British Pain Society, Royal Society of Medicine. ASCR undertakes consultancy and advisory board work for Imperial College Consultants–in the last 24 months this has included remunerated work for: AstraZeneca, Pharmnovo, Confo and Combigene. ASCR has received payments or honoraria for lectures/presentations from Hospital for Special Surgery/Cornell University, USA; and United Arab Emirates University. ASCR has a patent issued or pending for Rice A.S.C., Vandevoorde S. and Lambert D.M Methods using N-(2-propenyl) hexadecanamide and related amides to relieve pain. WO 2005/079 771. ASCR is President of IASP and has had roles on the following committees: Joint Committee on Vaccine and Immunisation-varicella sub-committee (until 2024); Medicines and Healthcare products Regulatory Agency (MHRA), Commission on Human Medicines–Neurology, Pain & Psychiatry Expert Advisory Group (until 2024); Analgesic Clinical Trial Translation: Innovations, Opportunities, and Networks (ACTTION) steering committee member (until 2024); Non-Freezing Cold Injury (NFCI) Independent Senior Advisory Committee (NISAC) (current). ST is a member of the Board of Directors of the Australian Pain Society. RDT has received grants from the European Union GA 777 500, DFG SFB 1158, GRK2350, IRTG 1874; and cash contributions to EU grant: Esteve, TEVA. RDT has received consulting fees from Bayer, Cered, Grünenthal, GSK, Merz, Sanofi; and support for meeting attendance, presentations and travel from several scientific societies. RDT has leadership or fiduciary roles in AWMF, IASP, EFIC, DGSS, WHO-MSAC. JT has received payments and support to attend University of Ottawa Equity meetings and participate in STROBE research activities and manuscript writing. AY is Councillor of the Pain in Childhood Special Interest Group, IASP; and Vice President of the Pain Association of Singapore. There are no other relationships or activities that could appear to have influenced the submitted work.

Figures

**Fig. 1**
**Overview of the five main stages of the ISSHOOs project**. Stage 1—Scoping Reviews to identify relevant items used in healthcare settings and research; Stage 2(a)—Delphi study to reach consensus on important items for consideration; Stage 2(b)—Supplementary Data specifically targeting under-represented groups; Stage 3—consensus on the ISSHOOs item sets (A and B); Stage 4—focus groups, item refinement; Stage 5—writing and dissemination.

**Fig. 2**
Global distribution of participants and collaborators.

**Fig. 3**
(a) Geographic distribution of all participants and collaborators (n = 301). (b) Geographic distribution of all participants and collaborators with a lived experience of persistent pain (n = 139).

See this image and copyright information in PMC

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Identifying Social factors that Stratify Health Opportunities and Outcomes (ISSHOOs) in pain research: consensus recommendations for the collection and reporting of equity-relevant data

Collaborators

Affiliations

Identifying Social factors that Stratify Health Opportunities and Outcomes (ISSHOOs) in pain research: consensus recommendations for the collection and reporting of equity-relevant data

Authors

Collaborators

Affiliations

Abstract

Conflict of interest statement

Figures

References

LinkOut - more resources

Full Text Sources

Miscellaneous