(Photo by Yan Krukau)
An international group of researchers has developed a standardized dataset aimed at improving how pain researchers document social and structural factors that influence pain. The initiative, known as Identifying Social factors that Stratify Health Opportunities and Outcomes (ISSHOOs), outlines a core set of sociodemographic variables that pain studies should collect to increase consistency, transparency, and representativeness across the field.
Published in The Lancet Regional Health – Europe, the researchers highlighted the need for more rigorous reporting practices in studies involving chronic pain.
According to the ISSHOOs team, led by Dr. Emma L. Karran from the University of South Australia, large disparities exist in who experiences chronic pain and who is represented in pain studies. Research has shown higher rates of chronic pain among individuals with lower socioeconomic status, marginalized ethnic groups, gender and sexual minorities, and those living in rural or low-resource environments. However, recruitment practices and data reporting standards have not kept pace with these demographic realities, they reported.
According to the ISSHOOs team, the absence of consistent demographic and social information limits researchers’ ability to identify inequities, compare study populations, and interpret findings in ways that reflect real-world clinical settings.
Dr. Bronwyn Lennox Thompson, a senior lecturer at the University of Otago in Dunedin, New Zealand, and one of the panelists involved in the project, said that her motivation for participating stemmed from longstanding gaps in how social contributors to pain are assessed.
“If we don’t routinely collect a core data set on participants’ characteristics, we don’t know how well research represents the people we hope to help,” she said. She added that the lack of consistent reporting has contributed to “inadequate understanding and treatment of pain in females and women.”
Study design and Delphi consensus process
Distribution of the participants with the highest number from Australia and Canada. (Image via The Lancet)
The ISSHOOs initiative used a modified Delphi process, which is a structured method for developing expert consensus. The project began with a scoping review covering the scientific literature on social determinants of health, pain mechanisms, epidemiology, disability, public health, and related fields. This review produced an initial list of variables that could be included in a standardized dataset.
The research team then convened an international panel that included clinicians, researchers, and individuals with lived experience of pain. The goal was to ensure the dataset would be relevant across multiple healthcare systems and cultural contexts.
(a) Geographic distribution of all participants and collaborators (n=301). (b) Geographic distribution of all participants and collaborators with a lived experience of chronic pain (n=139). (Image via The Lancet)
Participants took part in several rounds of rating and feedback. Each round assessed the relevance, conceptual clarity, and feasibility of collecting specific variables in research settings.
Thompson described the research process as “well-run and very respectful,” stating that the Delphi structure allowed participants’ perspectives to be reflected accurately throughout the revision stages.
Following multiple Delphi rounds, the panel reached agreement on two tiers of recommended data collection:
- Set A: A core minimum dataset that all pain studies should collect, regardless of study design or location.
- Set B: Additional variables that should be included when feasible, depending on the study’s scope and cultural or regional considerations.
Although the specific variable list is technical, the datasets include demographic, socioeconomic, cultural, and contextual factors that have been shown to influence pain experiences, treatment access, and health outcomes.
The authors state that the dataset is intended to serve as a guide for researchers to improve consistency in reporting and to support more equitable research practices globally.
Implications for clinicians
While the dataset is primarily designed for use in research, clinicians may also benefit from more consistent reporting of participant demographics. Thompson noted that having a standardized dataset could help clinicians compare study populations to their own patient groups. “This information will help characterise participants and, in doing so, encourage greater consideration of important factors both in how research is translated into practice and in identifying gaps in our knowledge,” she said.
More comprehensive reporting may also enhance clinicians’ ability to interpret whether research findings apply to the individuals they treat, particularly when working with populations that are historically underrepresented in pain research — including racial and ethnic minorities (such as Black, Native American, or Hispanic adults), people of lower socioeconomic status, women, and gender/sexual minorities, according to Pain. These groups often face disparities in pain prevalence, access to care, and treatment.
Role of psychological and social factors
The study also highlights the need for deeper investigation into how social disadvantage influences pain-related outcomes. The researchers reported that the evidence shows disproportionately higher rates of chronic pain among people with low socioeconomic status, ethnic minorities, rural residents, and individuals with diverse gender or sexual identities. However, the mechanisms behind these disparities remain unclear.
Thompson said that many studies still assume uniformity in pain mechanisms across populations, despite known differences in sex-based nociceptive processing and the influence of cultural or gender norms. She said these gaps create challenges in understanding how psychological and social context may alter treatment response or pain chronicity.
“Until we investigate this area more, we’re assuming similarities that may not exist,” she said.
Recent research has demonstrated how these differences impact real-world outcomes. A 2024 review on racial and ethnic disparities in chronic pain treatment found that Black, Hispanic, and Indigenous patients often receive less adequate pain management than white patients, even when presenting with similar symptoms. However, these inequities remain difficult to track because many studies “don’t collect data on these social factors,” said Thompson.
Similar patterns were reported in a systematic review of lumbar spine surgery outcomes where lower education and lower income were consistently linked to greater postoperative pain, disability, and opioid use among nearly 31,000 adults across 12 countries. The authors noted that key variables such as race, ethnicity, residence, and social capital were rarely reported in the literature, reinforcing the ISSHOOs team’s call for standardized demographic and social data collection across pain research.
In practice, the ISSHOOs framework could be implemented by having clinics routinely collect the recommended social and demographic variables during patient intake. For example, a pain clinic could use information, such as income level or ethnicity to identify which groups are experiencing poorer outcomes and adjust treatment plans or follow-up care accordingly. Over time, this would allow clinicians to spot patterns, address barriers, and better tailor care to underserved populations.
Ongoing challenges and next steps
The authors note that significant challenges remain in implementing a global standard. Some variables, such as those related to discrimination, gender identity, or socioeconomic vulnerability, may be sensitive or subject to regional restrictions. Ensuring cultural relevance across differing healthcare systems will require ongoing adjustment and collaboration.
Thompson emphasized that further work is needed to address persistent gaps. She said the dataset provides “a set of factors that need to be included so that we can ask intelligent questions to understand why persistent pain and its impact are not distributed evenly.”
She also noted that researchers and clinicians should remain cautious when generalizing findings, as study participants “may not look like the people we see in clinical practice.”
The ISSHOOs consensus project provides a structured framework for improving demographic and social data collection in pain research. By adopting the recommended datasets, researchers may be better equipped to evaluate inequities, strengthen study design, and support more accurate interpretation of findings.
For clinicians, the dataset may improve the relevance and applicability of pain research to diverse patient populations, contributing to more equitable and informed clinical practice.
Dezare Lozano
Dezare is a student attending San Diego State University in San Diego, California. She is majoring in Journalism with a minor in creative writing and plans to graduate in 2024. She is emphasizing news writing in her major.
While having adequate experience in writing news stories during her education, Dezare aims to obtain expertise in writing about other types of journalism. Her goals consist of earning a spot in an office with a vast newspaper company, alongside traveling to various places to capture photojournalism.
When available, Dezare loves to practice her camera skills and writing skills. She also enjoys hobbies such as cooking, animating, and working on creative writing side pieces.
