Developing a patient-reported experience questionnaire with and for people who use drugs: A community engagement process in Vancouver’s Downtown Eastside

Abstract

People who use drugs (PWUD) frequently have complex health care needs, yet face multiple barriers to accessing services. Involving PWUD in health service design and evaluation can enhance the quality of data collected and ensure policy and practice improvements reflect the expressed needs of the population. However, PWUD remain largely excluded from the evaluation of health services that directly affect their lives, including development of patient-reported experience measures (PREMS) that have gained prominence in health services research and clinical practice. Detailed descriptions of PWUD participation in survey design are notably absent in the literature. In this commentary, we present a case that demonstrates how PWUD can contribute meaningfully to the development of questionnaires that assess patient-reported health care experiences. We describe the development, implementation and outcomes of a process to engage local drug user organizations in the evaluation of a redesign and reorientation of health service delivery in the Downtown Eastside (DTES) neighborhood of Vancouver, Canada. Through this process, participants contributed critical elements to the design of a patient-reported experience measure, including: (1) identifying unmet service needs in the neighborhood; (2) identifying local barriers and facilitators to care; (3) formulating questions on cultural safety; and (4) improving structure, language and clarity of the questionnaire. We highlight lessons learned from the process, reflecting on the strengths, challenges and ethical considerations associated with community-based approaches to questionnaire development. The workshop model presented here illustrates one flexible and promising approach to enabling meaningful participation of PWUD in questionnaire development.

Introduction

In Canada and globally, people who use drugs (PWUD) frequently have complex health care needs related to substance use, including co-occurring infectious diseases (e.g., HIV, viral hepatitis), cardiovascular disease, substance dependence and mental health conditions (Degenhardt & Hall, 2012; Urban Health Research Initiative, 2013). However, PWUD also face substantial barriers to accessing care, often delaying care due to stigma and discrimination experienced within the health care system (Neale, Tompkins, & Sheard, 2008). Indigenous peoples¹ in particular experience poor access to appropriate care and a disproportionate burden of disease and substance-related harm (Gracey & King, 2009). These health disparities are rooted in colonial policies and perpetuated by ongoing institutionalized racism, entrenched poverty, social exclusion, interpersonal discrimination and inequitable social policies and practices (Allan & Smylie, 2015; Browne et al., 2011; Goodman et al., 2017; Tang & Browne, 2008). Primary care, substance use and mental health services have historically developed and operated separately in North America, posing additional barriers to comprehensive and continuous care (Rush, Fogg, Nadeau, & Furlong, 2008). Within this context, PWUD frequently access care from multiple sources (Nosyk et al., 2014), and rely heavily on emergency services (Fairbairn et al., 2011; Hansagi, Engdahl, & Romelsjö, 2012; Kerr et al., 2004; Palepu et al., 1999); this fragmented care delivery has been associated with poorer medication adherence and health outcomes (Nosyk et al., 2015).

Regional health authorities are increasingly promoting integrated care models as a way to improve accessibility and quality of services for PWUD with complex needs (Carey et al., 2013; Crowley, Kirschner, & Health and Public Policy Committee of the American College of Physicians, 2015; Health Canada, 2002; Korthuis et al., 2017). This has been the case in Vancouver’s Downtown Eastside (DTES), a neighborhood that has long been home to a large illicit drug use scene. Here, the Vancouver Coastal Health Authority (VCH) is undertaking a redesign of health services aimed at improving health outcomes for residents of the DTES through greater coordination and continuity of care. Launched in 2016, the ‘Downtown Eastside Second Generation Strategy’ (DTES-2GS) plans to establish integrated care teams within three community health clinics; partnerships with private clinics to coordinate care for clients accessing private clinics; a new low-barrier addiction clinic with rapid access to opioid agonist treatment; and staff competency training on Indigenous cultural safety, women’s needs, trauma-informed care, harm reduction fundamentals and pain management. In addition, VCH has allocated funding away from some existing services (including a low-barrier drop-in center for PWUD) and toward development of a new integrated health care center.

Evaluating the impact of these service changes is challenged by the limited availability of client reported data on health care utilization and health care experiences in the DTES. Patient reported experience measures (PREMS), such as the World Health Organization (WHO) Survey on Health and Health System Responsiveness, provide promising tools for assessing patient’s perceptions of care received during a recent health care experience (Valentine et al., 2003). However, existing measures of patient experience are not designed to address the distinct health care needs, perspectives and experiences of PWUD. With few exceptions (Madden, Lea, Bath, & Winstock, 2008; Neale et al., 2016), PWUD are rarely meaningfully involved in the development of health service questionnaires, despite calls from drug user organizations for more involvement in research design (Australian Injecting and Illicit Drug Users League (AIVL) (2003); Canadian HIV/AIDS Legal Network, 2006; Consumers’ Health Forum (CHF), and (NHMRC) (2001); Vancouver Area Network of Drug Users, 2018a, 2018b). Detailed descriptions of PWUD participation in questionnaire design are largely missing in health services literature, raising questions about the extent of community involvement in community-based projects. The exclusion of PWUD from health service research and evaluation is methodologically and ethically problematic given evidence that service-user involvement can enhance the quality of data collected and ensure that evidence best meets the needs of affected communities (Hayashi et al., 2012; Neale et al., 2016; Shannon et al., 2007).

To address this gap, we partnered with three local drug user organizations to develop a patient-reported experience questionnaire. We outline the development, implementation and outcomes of this community engagement process, including the strengths, challenges and ethical considerations associated with community-based approaches to questionnaire development.