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Substance Use Research Methods: Ethics, Culture, and Health Equity
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Substance Use Research Methods: Ethics, Culture, and Health Equity

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Behavioral and Mental Health".

Deadline for manuscript submissions: 31 May 2025 | Viewed by 12528

Special Issue Editors

Dr. Andrew Smirnov

E-Mail Website
Guest Editor
School of Public Health, Faculty of Medicine, The University of Queensland, Herston 4006, Australia
Interests: substance use; injecting drug use; hepatitis C; epidemiology
Dr. Caroline Salom

E-Mail Website
Guest Editor
Institute for Social Science Research, Faculty of Humanities, Arts and Social Sciences, The University of Queensland, Brisbane 4072, Australia
Interests: substance use/misuse; mental health disorders; alcohol related harm

Special Issue Information

Dear Colleagues,

The social marginalization of people who use alcohol or other psychoactive substances, driven by factors such as stigma, discrimination, and the criminalization of substance use, undermines health and wellbeing and is a barrier to health equity, including health service access. Conversely, this social marginalization  is also a barrier to public health practitioners and researchers who are seeking to reduce substance-related harm. People who use substances are often wary of participating in research and disclosing their personal information. This contributes to non-response and response biases, which can undermine the value of substance use research. For example, studies of public health and therapeutic interventions for substance use are hindered by significant loss to follow up [1]. Survey instruments can have inherent biases that impact the validity of the data collected for different groups, including First Nations and other cultural minority populations [2]. Further, a lack of consumer involvement in research design or program delivery may perpetuate deficit views of people who use alcohol or other substances [3]. Innovative and ethical research methods underpin high-quality research, which can support effective public health responses to substance use issues. An important part of this is the participation of people who use substances and peer substance use treatment programs in the design and evaluation of the public health responses intended to support them. This is fundamental for improving program quality and outcomes, and strategies are needed to overcome stigma and discrimination to ensure this can occur effectively and ethically and modify the related social determinants of health over time [4]. This Special Issue is open to any studies of substance use research methods, particularly those that reflect on public health, the behavioral environment, comorbid mental health disorders, risk and treatment for sexually transmitted and other infections, ethics, culture, health equity, and/or consumer participation.

References

  1. Stockings, E.; Bartlem, K.; Hall, A.; Hodder, R.; Gilligan, C.; Wiggers, J.; Sherker, S.; Wolfenden, L. Whole-of-community interventions to reduce population-level harms arising from alcohol and other drug use: a systematic review and meta-analysis. Addiction 2018, 113, 1984–2018. https://doi.org/10.1111/add.14277.
  2. Weatherall, T.J.; Conigrave, K.M.; Conigrave, J.H.; Lee, K.S.K. What is the prevalence of current alcohol dependence and how is it measured for Indigenous people in Australia, New Zealand, Canada and the United States of America? A systematic review. Sci. Clin. Pract. 2020, 15, 32. https://doi.org/10.1186/s13722-020-00205-7.
  3. van der Sterren, A.E.; Nathan, S.; Rawstorne, P.; Yarbakhsh, E.; Gough, C.; Bowles, D. Involvement of people who use alcohol and other drug services in the development of patient-reported measures of experience: a scoping review. Health Expect 2023, 26, 2151–2163. https://doi:10.1111/hex.13829.
  4. Goodhew, M.; Stein-Parbury, J.; Dawson, A. Consumer participation in drug treatment: a systematic review. Drugs Alcohol Today 2019, 19, 97–112. https://doi.org/10.1108/DAT-05-2018-0023.

Dr. Andrew Smirnov
Dr. Caroline Salom
Guest Editors

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Keywords

  • substance use
  • drug harm reduction
  • research methods
  • research ethics
  • stigma and discrimination
  • health equity
  • culture and health
  • consumer participation
  • program design and evaluation
  • sampling and measurement

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Published Papers (7 papers)

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Research

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16 pages, 278 KiB  
Article
Balancing Privacy, Trust, and Equity: Patient Perspectives on Substance Use Disorder Data Sharing
by Mengyi Wei, Michael Todd, Aimee N. C. Campbell, Darwyn Chern, Eric Lott, Mary J. Whitfield, Nick Stavros, Elise Greenberg and Adela Grando
Int. J. Environ. Res. Public Health 2025, 22(4), 617; https://doi.org/10.3390/ijerph22040617 - 15 Apr 2025
Viewed by 224
Abstract
Background: Sharing substance use disorder (SUD) data is essential for advancing equitable healthcare and improving outcomes for marginalized populations. However, concerns about privacy, stigma, and adherence to data privacy regulations often hinder effective data sharing. This study explores patient preferences and considerations related [...] Read more.
Background: Sharing substance use disorder (SUD) data is essential for advancing equitable healthcare and improving outcomes for marginalized populations. However, concerns about privacy, stigma, and adherence to data privacy regulations often hinder effective data sharing. This study explores patient preferences and considerations related to sharing SUD-related medical records, with a focus on the sociocultural and systemic factors that shape their willingness to share. Methods: A total of 357 adult patients from four community-based clinics in Arizona participated in a cross-sectional electronic survey. The survey assessed sociodemographic factors, experiences of stigma (self-directed, anticipated, and provider-based), trust in healthcare providers, satisfaction with care, and willingness to share SUD data across various scenarios. Data were analyzed using descriptive statistics, Pearson correlations, and one-way ANOVA to uncover key associations. Results: Patients identified SUD history, diagnoses, and treatment information as particularly sensitive. Stigma was significantly correlated with increased sensitivity and reduced willingness to share data, especially with providers outside their primary facility (p < 0.001). In contrast, trust in providers and higher satisfaction with care were linked to greater willingness to share data with all providers (p < 0.01). Patients were more inclined to share SUD data during emergencies or for direct treatment purposes than for administrative or research applications (p < 0.001). Discussion: These findings underscore the ethical imperative to address stigma and foster trust to promote equitable SUD data sharing. Policies must empower patients with control over sensitive health information while ensuring cultural competence and fairness in care delivery. Ensuring that patients feel confident in how their data are used may encourage greater participation in health information exchange, ultimately supporting more effective and individualized SUD care. Full article
(This article belongs to the Special Issue Substance Use Research Methods: Ethics, Culture, and Health Equity)
12 pages, 243 KiB  
Article
Advancing Health Equity Through Substance Use Medical Record Data Sharing: Insights from Healthcare Providers
by Mengyi Wei, Anita Murcko, Sai Prathyusha Nookala, Dharma Teja Bhattu, Sai Jahnavi Vemula, Darwyn Chern, Eric Lott, Mary Jo Whitfield, Nick Stavros, Deborah Ariosto and Maria Adela Grando
Int. J. Environ. Res. Public Health 2025, 22(4), 462; https://doi.org/10.3390/ijerph22040462 - 21 Mar 2025
Viewed by 367
Abstract
Background: Better care is delivered when patients and providers share health information. Unfortunately, critical health data are often unavailable due to fragmentation within healthcare systems. Sensitive health information, like substance use disorder, is often sequestered in ways that do not meet patient data [...] Read more.
Background: Better care is delivered when patients and providers share health information. Unfortunately, critical health data are often unavailable due to fragmentation within healthcare systems. Sensitive health information, like substance use disorder, is often sequestered in ways that do not meet patient data privacy choices and provider data access needs. This study explored healthcare providers’ perspectives on barriers and facilitators to substance use data sharing and its impact on care. Methods: Focus groups were conducted with 31 healthcare providers from four treatment facilities. Discussions focused on privacy concerns, data-sharing workflows, and scenarios involving four Healthcare Effectiveness Data and Information Set (HEDIS) substance use disorder specific metrics. Open coding identified key concepts, and thematic analysis was employed to identify barriers and facilitators influencing data sharing and care outcomes. Results: Providers identified five main barriers: patient reluctance to share (48%), data access challenges (42%), poor provider coordination (29%), incomplete health information (26%), and complexity of privacy regulations (23%). Key facilitators included patient understanding (26%), patient–provider relationship (16%), and reliability of health information systems (16%). Discussion: This study sets the stage for understanding and addressing sensitive healthcare data access and privacy concerns through improved care coordination, systems interoperability, education, and policy reform. Full article
(This article belongs to the Special Issue Substance Use Research Methods: Ethics, Culture, and Health Equity)
18 pages, 613 KiB  
Article
‘You’ve Just Got to Keep Pestering’: Barriers and Enablers of Attaining Continuity of Hepatitis C Care for People Transitioning Between Prison and Community Health Services in South-East Queensland, Australia
by Idin Panahi, Linda A. Selvey, Cheneal Puljević, Amanda Kvassay, Dorrit Grimstrup and Andrew Smirnov
Int. J. Environ. Res. Public Health 2025, 22(2), 238; https://doi.org/10.3390/ijerph22020238 - 7 Feb 2025
Viewed by 793
Abstract
Highly effective direct-acting antiviral (DAA) therapies for hepatitis C (HCV) have been available in Australian prisons since 2016. To address treatment interruption following release from prisons, the Queensland Injector’s Health Network (QuIHN) launched a Prison Transition Service (PTS) in south-east Queensland, Australia. Presently, [...] Read more.
Highly effective direct-acting antiviral (DAA) therapies for hepatitis C (HCV) have been available in Australian prisons since 2016. To address treatment interruption following release from prisons, the Queensland Injector’s Health Network (QuIHN) launched a Prison Transition Service (PTS) in south-east Queensland, Australia. Presently, the factors associated with continuity of post-release HCV care are poorly understood. The objective of this qualitative study was to explore the barriers and facilitators to HCV treatment among people recently released from prisons among PTS clients and stakeholders. Qualitative interviews were conducted with 27 participants, namely, 13 clients and 14 stakeholders (health and community support workers) of the PTS. We conducted thematic analysis using the framework of person-, provider-, and system-level barriers and facilitators. Person-level barriers included competing priorities post-release, while facilitators included self-improvement after treatment completion, preventing transmission to family, and social support. Provider-level treatment barriers included enacted stigma, limited prison health service capacity, and post-release health system challenges. Systemic barriers included stigma relating to HCV, injecting drug use, incarceration, and limited availability of harm reduction services. Policy changes and investment are required to expand HCV treatment in south-east Queensland prisons to facilitate patient navigation into community care. In terms of reducing stigma among health staff and the general community towards people with HCV, a history of incarceration and/or who inject drugs is crucial for improving treatment rates. Strategies such as peer-led or nurse-practitioner-led models of care may help improve treatment completion. Continuity of HCV treatment post-release from prisons is essential for Australia to meet the WHO’s 2030 HCV elimination target. Full article
(This article belongs to the Special Issue Substance Use Research Methods: Ethics, Culture, and Health Equity)
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9 pages, 259 KiB  
Article
Medicine and Pharmacy Students’ Role in Decreasing Substance Use Disorder Stigma: A Qualitative Study
by Alina Cernasev, Rachel Barenie, Hayleigh Hallam, Kenneth C. Hohmeier and Shandra Forrest
Int. J. Environ. Res. Public Health 2024, 21(12), 1542; https://doi.org/10.3390/ijerph21121542 - 21 Nov 2024
Viewed by 6865
Abstract
Background: A strong body of research has established stigma as a barrier to care for patients with substance use disorders (SUDs), which can lead to poorer patient outcomes. Prior qualitative research on healthcare practitioners’ perceptions is limited. This study aimed to describe healthcare [...] Read more.
Background: A strong body of research has established stigma as a barrier to care for patients with substance use disorders (SUDs), which can lead to poorer patient outcomes. Prior qualitative research on healthcare practitioners’ perceptions is limited. This study aimed to describe healthcare professional students’ perceived roles in decreasing SUD stigma. Methods: A qualitative design using focus groups (FGs) was employed. This study applied the stigma conceptualization approach by Link and Phelan to develop the FG guide, including labeling, stereotyping, separation, status loss, and discrimination. These components are linked to the construction of cognitive categories that lead to stereotyped beliefs. The FG participants were graduate-level healthcare students recruited via email from the University of Tennessee Health Science Center (UTHSC). The research team analyzed the transcripts using Braun and Clarke’s approach to identify emergent themes in the data. Dedoose® Version 9.0.107, a qualitative data analysis software platform, was utilized to facilitate data manipulation and retrieval during the analysis. Steps were taken to ensure the reliability of the qualitative data using Lincoln and Guba’s criteria. Results: Among thirty-one pharmacy and medical student participants, three themes emerged from the data: (1) student recognition of stigma, (2) the role of healthcare professionals in harm reduction, and (3) calls to enhance advocacy efforts to improve patient outcomes. These themes collectively encompass key members of the healthcare team’s perceptions and solutions to SUD stigma. Conclusions: This research reveals the importance of expanding training opportunities to go beyond the SUD disease state, to other evidence-based approaches such as effective advocacy, harm reduction, and stigma, which impact the delivery of that care. Full article
(This article belongs to the Special Issue Substance Use Research Methods: Ethics, Culture, and Health Equity)
13 pages, 331 KiB  
Article
The Association between Post-Traumatic Stress Disorder and Problematic Alcohol and Cannabis Use in a Multi-Ethnic Cohort in The Netherlands: The HELIUS Study
by Christin Kühner, Joanne P. Will, Sera A. Lortye, Henrike Galenkamp, Anja Lok, Mirjam van Zuiden, Arnoud R. Arntz, Kathleen Thomaes, Anna E. Goudriaan and Marleen M. de Waal
Int. J. Environ. Res. Public Health 2024, 21(10), 1345; https://doi.org/10.3390/ijerph21101345 - 11 Oct 2024
Cited by 1 | Viewed by 1672
Abstract
(1) Background: Ethnic minorities exhibit a higher prevalence of post-traumatic stress disorder (PTSD), while results for problematic substance use among ethnic groups remain mixed. PTSD and problematic substance use often co-occur; however, the impact of ethnicity on this association has not yet been [...] Read more.
(1) Background: Ethnic minorities exhibit a higher prevalence of post-traumatic stress disorder (PTSD), while results for problematic substance use among ethnic groups remain mixed. PTSD and problematic substance use often co-occur; however, the impact of ethnicity on this association has not yet been investigated. (2) Methods: Self-report data on problematic alcohol/cannabis use (AUDIT/CUDIT) and presence of severe PTSD symptoms (PSS-SR) of N = 22,841 participants of Dutch (n = 4610), South-Asian Surinamese (n = 3306), African Surinamese (n = 4349), Ghanaian (n = 2389), Turkish (n = 3947), and Moroccan (n = 4240) origin were available from the HELIUS study. (3) Results: We found a positive association between the presence of severe PTSD symptoms and problematic alcohol and cannabis use. Ethnicity did not moderate the association between the presence of severe PTSD symptoms and problematic alcohol/cannabis use. (4) Conclusions: We demonstrated the relationship between the presence of severe PTSD symptoms and problematic alcohol/cannabis use in a multi-ethnic sample. The relationship between the presence of severe PTSD symptoms and problematic alcohol/cannabis use was similar between ethnic groups. We recommend screening for PTSD symptoms in those exhibiting problematic substance use and vice versa, regardless of ethnic background. Full article
(This article belongs to the Special Issue Substance Use Research Methods: Ethics, Culture, and Health Equity)
11 pages, 283 KiB  
Article
A Collaborative Approach to Understanding the Intersections of Practice and Policy for Peers in the Alcohol and Other Drugs Sector
by Timothy Piatkowski and Emma Kill
Int. J. Environ. Res. Public Health 2024, 21(9), 1152; https://doi.org/10.3390/ijerph21091152 - 30 Aug 2024
Cited by 4 | Viewed by 1455
Abstract
Introduction: Peers in the alcohol and other drug sectors possess lived–living experience (LLE) crucial for shaping community care. However, genuine consumer collaboration is often confounded by stigma. This study examined peers’ perceptions, exploring their experiences regarding workforce dynamics, policy implications, and impacts on [...] Read more.
Introduction: Peers in the alcohol and other drug sectors possess lived–living experience (LLE) crucial for shaping community care. However, genuine consumer collaboration is often confounded by stigma. This study examined peers’ perceptions, exploring their experiences regarding workforce dynamics, policy implications, and impacts on health equity. In presenting the research, we sought to synthesise the research methods and illustrate the methodological innovation and knowledge production in substance use research through authentic collaboration. Methods: We purposively sampled peer networks and community organisations, involving peer-researchers in planning, design, and analysis. We conducted semi-structured digital interviews with 18 peers and applied iterative coding to analyse the data. Results: This collaborative process provided nuanced insights into sectoral challenges. Peers expressed emotional strain revisiting personal substance use experiences, blurring personal and professional boundaries. Tokenistic peer involvement critiques underscored the need for genuine leadership and organisational support. Conclusion: We advocate for a shift towards equitable and inclusive policy development through both organisational and systemic restructuring. However, these changes are hamstrung by broader policy frameworks, which require a shift to peer-led principles, ensuring the expertise of peers is genuinely valued. Policymakers should invest in expanding peer frameworks, acknowledging the diversity within communities of people who use drugs to improve health equity and public health outcomes. This innovative approach to substance use research emphasises the transformative impact of integrating LLE into research. Full article
(This article belongs to the Special Issue Substance Use Research Methods: Ethics, Culture, and Health Equity)

Review

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22 pages, 1033 KiB  
Review
Individuals 45 Years and Older in Opioid Agonist Treatment: A Scoping Review
by Zhanna Gaulen, Linn-Heidi Lunde, Silvia Eiken Alpers and Siv-Elin Leirvaag Carlsen
Int. J. Environ. Res. Public Health 2025, 22(3), 458; https://doi.org/10.3390/ijerph22030458 - 20 Mar 2025
Viewed by 366
Abstract
This scoping review explores the unique challenges and needs faced by ageing individuals, aged 45 and above, in opioid agonist treatment (OAT), noting the earlier onset of age-related impairments among this population. The literature search was conducted in PsycINFO, EMBASE, MEDLINE, CINAHL, and [...] Read more.
This scoping review explores the unique challenges and needs faced by ageing individuals, aged 45 and above, in opioid agonist treatment (OAT), noting the earlier onset of age-related impairments among this population. The literature search was conducted in PsycINFO, EMBASE, MEDLINE, CINAHL, and Web of Science. A total of 28 observational studies were included. Five topics were identified: health, treatment, substance use, demographic, and social aspects. Findings reveal that, while health and age-related concerns are often discussed in the literature, limited attention has been given to gender differences, social factors such as financial issues, and psychological factors, which are also critical aspects of the lives of ageing individuals undergoing OAT. This review emphasizes the importance of expanding research to address these gaps, ultimately aiming to improve their overall well-being. Full article
(This article belongs to the Special Issue Substance Use Research Methods: Ethics, Culture, and Health Equity)
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