Bringing experiences of healthcare in custody into quality improvement

Abstract

Patient experience is an essential component of safe and high-quality healthcare, yet rarely examined in the context of carceral settings. This article describes a project undertaken by the Ontario Ministry of the Solicitor General to collect evidence and perspectives on how to bring patient experiences of healthcare services delivered in provincial correctional facilities into ongoing quality improvement work. We first conducted a scoping review and jurisdictional scan to learn from existing processes and experiences. We then engaged frontline healthcare providers delivering services in custody and people with recent experience of incarceration regarding priority measures and processes for data collection and mechanisms for implementing evidence-based change. This article describes methods used to engage stakeholders, including a survey and focus groups, as well as key lessons learned. This work is relevant to readers experiencing barriers to patient engagement, interested in collaborative research processes, and developing services for people who have experienced incarceration.

Introduction

Patient experience is increasingly recognized as an essential measure of quality of healthcare services across settings and is associated with patient safety, clinical effectiveness, health outcomes, and resource use. ¹ In correctional facilities, assessing patient experience with healthcare services is particularly important to determine whether services are meeting needs and to inform quality improvement. In this setting, people cannot seek alternative access to care,^2,3 are unable to choose their care provider, and may be engaging with healthcare by policy requirement. ⁴ Additionally, people who experience incarceration have a greater burden of physical and mental health conditions compared to others in the general population and significantly higher use of primary healthcare services in custody compared to after they are released.^5-7

Many of the unique aspects of custody means that tools and standards related to Patient Reported Experience Measures (PREMs) and Patient Reported Outcome Measures (PROMs) from other healthcare settings may not be well suited to correctional facilities. Carceral settings also present specific challenges for collecting patient experience data. For example, close quarters and command-and-control structures of correctional facilities may make feedback confidentiality both more difficult to ensure and a barrier to participation if people are concerned sharing feedback could have repercussions on their healthcare or other aspects of their time in custody.

There are few examples of data collection on patient experiences of correctional healthcare services for the purposes of quality improvement available,^8,9 and information is limited regarding the development of the processes and tools used. Measures of quality and standards for healthcare services in custody have therefore primarily relied on expert opinion or adapting tools from community settings. ¹⁰ Engaging stakeholders, such as healthcare providers and people with lived experience of incarceration, in the development of tools and processes has the potential to meaningfully shape quality improvement work for healthcare services in correctional facilities. In this paper, we describe our work to develop a process for collecting patient experience feedback within Ontario’s provincial correctional facilities.

Context

The provision of healthcare services to individuals in provincial custody in Ontario is the responsibility of the Ontario Ministry of the Solicitor General (SOLGEN) under the Ministry of Correctional Services Act, R.R.0.1990, Reg. 778. Provincial and territorial correctional facilities hold individuals serving sentences less than two years, people on remand (awaiting bail, trial, or sentencing), or on immigration hold. SOLGEN is responsible for 25 provincial correctional facilities in Ontario—jails, detention centres, correctional centres, treatment centres, or a combination of these—holding a daily average of 7,247 individuals in custody (2021/22). ¹¹ Of those in custody, roughly 80% are held on remand (with uncertainty regarding their length of time in custody) and spend a few weeks in custody on average. ¹² In 2021/22, there were 55,672 admissions to provincial custody in Ontario. ¹¹

Project description

The process used three key inputs: (1) jurisdictional scan and scoping literature review; (2) engagement with frontline healthcare staff; and (3) a research study with people with recent experience of incarceration.

Jurisdictional scan and scoping review

Methods

We conducted an internet search in November 2022 to identify relevant publicly available documents. We then reached out to other correctional health authorities to ask about relevant practices and/or tools. This included organizations identified in the internet search, information requests through established networks, such as the Canadian federal/provincial/territorial table, and through informal networks. Finally, through an existing partnership with the McMaster University Department of Family Medicine, a research team led by one of the authors conducted a scoping review of the published literature.

Findings

Through the jurisdictional scan, we engaged with three jurisdictions who shared their experiences and/or data collection tools. Two (Alberta, Canada ¹³ and New South Wales, Australia ¹⁴ ) were identified through public information available on-line; the third through the networks described above. The scoping review identified additional examples of methods for gathering information on patient experience. However, most studies focused on patient experience of specific services (e.g., care for substance use disorder) or pilot programs, or were limited to subpopulations (e.g., people with HIV). A small number of studies described work to understand experiences of healthcare services among the general population in custody, predominately using surveys.^8,9,15 One study examined staff and patient perspectives of how patient feedback was collected and fed into quality improvement in two correctional facilities in England. ¹⁶ Most papers described discrete research studies rather than ongoing data collection, and few discussed integration with quality improvement processes. Only one study reported using a data collection tool validated for use with incarcerated populations. ¹⁵

Staff engagement

Survey

Methods

We created an on-line questionnaire to understand correctional healthcare staff’s experiences with patient feedback in other settings, their views on collecting patient experience data, and how they would like to be involved going forward. An invitation to complete the questionnaire was distributed in April 2023 through clinical practice leads to all frontline healthcare staff, including nurses, healthcare managers, physicians, social workers, addictions counsellors, psychologists, psychiatrists, pharmacists, dentists, and physiotherapists. Responses were anonymous.

Findings

Over half (55%) of the 176 respondents had worked in an environment where patient feedback was collected and 71% thought it would be useful to collect patient feedback in custody (rated 7 or above out of 10). Open text comments revealed perceived benefits of patient feedback included: improvements to care, recognition of what is working well, informing policies and best practices, and for higher management to make necessary changes. Perceived challenges included that individuals in custody may not be engaging with healthcare by choice, and that those most likely to provide feedback may be those most or least satisfied with care.

Over three-quarters (77%) of respondents thought staff should be involved right from the conception phase in developing the process and/or tool to understand experiences of healthcare in custody. Preferences were communicated for participation in interviews, virtual focus groups, and on-line surveys.

Virtual focus groups

Methods

We conducted 14 discussions with approximately 120 healthcare staff on a virtual meeting platform with pre-existing advisory groups and communities of practice. These groups included nurses, mental health nurses, nurse practitioners, addictions counsellors, social workers, social work managers, pharmacists, and healthcare managers.

Discussion questions were informed by survey findings. Questions focused on the benefits and challenges of patient feedback in custody, what types of feedback questions to ask, how care in custody may differ from care in the community, and other considerations for this work, including specific populations and what staff would like to see done with feedback received.

Each meeting included a facilitator and at least one note-taker. Discussions were recorded to enable review and clarification where needed. Notes were coded by one author using the Canadian Quality and Patient Safety Framework for Health Services ¹⁷ as an initial code book. All team members who participated in the focus groups met throughout to discuss themes and ideas under three main categories: (1) considerations for developing and implementing a process; (2) key topics to address; and (3) potential applications of findings from patient feedback.

Findings

Considerations for the development and implementation of a process included literacy and language needs of participants, specific considerations for overrepresented and/or marginalized groups, and confidentiality and safety for participation. Staff also discussed the constraints of operational requirements and practical challenges for implementation of a tool (e.g., timing and access to potential participants). For example, people at the end of their time in custody would have had the greatest opportunity to interact with healthcare, but most people in custody are being held on remand so their release date is unknown, posing a challenge for planning patient engagement. Focus group participants raised concerns about added workload for healthcare staff if involved in implementing a feedback process on top of existing day-to-day duties. Further, staff highlighted that in some cases, the patient’s expectations for care might not align with clinical need or operational realities, especially around access to providers and medications, with implications for both data collection and interpretation of findings.

Potential topics for inclusion in the final tool related to five themes: access to care, continuity of care (between community and custody as well as between institutions), appropriate care, privacy and confidentiality, and the patient-provider relationship. Cross-cutting all five themes was recognition that individuals in custody access healthcare for a variety of reasons, and that healthcare service delivery in corrections is shaped by operational procedures including factors related to safety that impact prescription medications and lockdowns.

Focus group participants indicated the findings could be used to inform quality improvement efforts both at institutions and in policy and decision-making at the corporate level of SOLGEN. Participants also highlighted the opportunity to share findings with external stakeholders as a means of raising the profile of correctional healthcare services in the broader health system, as well as holding SOLGEN accountable for quality improvement. Underlying several discussions with staff was a desire to convey the context of providing healthcare in custody. Focus group participants discussed many challenges and limitations they face as providers, and a concern that information about experiences of care in custody would be interpreted or actioned by people unfamiliar with the realities of delivering healthcare in custody. Despite this, overall sentiment was supportive of a process to obtain and apply feedback from patients.

People with recent experience of incarceration

Methods

A research team at McMaster University, led by one of the authors and including team members with lived experience of incarceration in Ontario, conducted focus groups with people in community who had been incarcerated in an Ontario provincial correctional facility in the last five years and had accessed or tried to access healthcare while in custody. The purpose of these discussions was to understand how experiences of healthcare in provincial custody differs from care in the community, the mechanism to provide feedback about the care they receive, and what participants believed was the best way for people in custody to have a voice in improving healthcare. SOLGEN had no influence into the funding, design, or conduct of this study.

Findings

Key themes from these focus group discussions highlighted challenges for patients in providing feedback and advocating for their care. These included the perception that healthcare is something people must “deserve” through their behaviour or urgency of need, that health and healthcare in custody may be linked with other outcomes (e.g., access to medication before going to court may affect legal outcomes), and that existing processes for complaints and problems, such as the Ombudsman, are often difficult to access or not effective. The research team presented findings to SOLGEN to inform development of the process, and a manuscript to share details of this study and its findings is currently under development.

Discussion

Through the jurisdictional scan and scoping review, we found there is little available about collecting information on patient experiences of healthcare delivered in correctional facilities and less on how these processes are developed. However, a majority (71%) of healthcare staff surveyed saw value in collecting patient experiences of care in this setting, indicating an unmet need for research and action.

In our work, early engagement of healthcare staff helped to identify and confirm key areas of exploration and allowed later engagement to be tailored to the specific needs of healthcare staff. For example, in the open-text response of the survey, staff expressed concerns about the reliability of patient-reported data. In subsequent discussion groups, we were able to examine this idea in detail with staff and better define the specific challenges underlying this concern. Additionally, 77% of survey participants indicated that staff should be engaged from the very beginning in developing the process for gathering patient experience measures illustrating the key role staff see for themselves in the work. Stakeholder engagement is recognized as a central component in other types of policy and systems-change work including the development of clinical guidelines. ¹⁸ Benefits of engagement in health research include better quality research, expanded applicability, and increased uptake of results. ¹⁹ Our experience reflects not only the value of engaging key stakeholders, but also the importance of ongoing engagement throughout the development of a process, rather than one-off consultation.

The importance of patient engagement in the development of PROMs in other settings has been established.^20,21 In our work, the perspectives of people with recent lived experience of healthcare in custody provided understanding of the context in which we would be asking people to participate. These discussions also provided insight into the diversity of healthcare needs and experiences among people in custody. Several of the themes identified through focus groups with people in the community aligned with the feedback from staff. For example, both groups highlighted difficulties with access to treatments, particularly for prescription medications. This agreement suggests a high degree of confidence in the findings.

An important lesson learned from this work was the time required to meaningfully engage stakeholders. After initial consultations with staff, timelines were extended to enable greater focus on ensuring staff felt empowered rather than targeted by PREMs. In other settings, staff perceptions of PREMs have been reported as a key barrier to use, including reluctance to overburden patients with paperwork, skepticism about the value of PREMs, and lack of interest. ²² Thoughtful engagement of staff in the development of PREMs is particularly important in the context of the custodial environment where security needs and responses, determined outside of the control of healthcare providers, directly impact the provision of healthcare services.

The project team is currently using the information gathered to develop models of how to collect patient feedback within Ontario provincial corrections. Further stakeholder engagement to review and refine methods and tools will help to ensure that experience measures collected are meaningful to staff, decision-makers, and patients. Additionally, specific engagement of overrepresented and underserved groups in custody will provide key insights into the quality and accessibility of care in corrections.

Conclusion

When meaningfully considered and actioned, patient experience measures may offer far-reaching impacts for healthcare settings, including changes to policy, practice, and training. This work undertaken by SOLGEN offers insights and lessons learned to other correctional jurisdictions and healthcare settings looking to develop or strengthen the role of patient feedback in quality improvement. Ideas raised by SOLGEN staff may be applicable in correctional facilities in other jurisdictions to improve healthcare delivery or operations management, as well as to address potential challenges to the development or implementation of patient feedback processes. Lessons may also be applied by other healthcare settings, particularly those working with marginalized groups and/or people with lived and living experience of incarceration. Future research should examine the needs and experiences of groups overrepresented in custody, including people who are Black, 2SLGBTQ+, and people with severe mental health conditions. Specific attention should also be given to the healthcare needs of Indigenous Peoples in custody, aligned with government commitments to Truth and Reconciliation and ongoing calls to action. Greater understanding of patient experiences of healthcare services in custody and the processes through which real feedback may be provided is essential to developing best practices, removing barriers, and improving equity and quality in care across healthcare settings.