Agency and Access: Redesigning the Prison Health Care Request Process

Abstract

This chapter describes the pain points experienced by many prisoners in trying to request medical attention, and the participatory co-design workshop process used by QUT Design Lab researchers to redevelop the Health Services Request Form into an easier-to-use, icon-based form that works for all prisoners, including those with low literacy or who have English as an additional language. The chapter details the international background of difficulties found in providing healthcare services to prisoners before detailing the local circumstances, including broad demographic categories of many incarcerated prisoners in Queensland. The designers then describe their research and participatory design process, before ending the chapter with the re-designed Health Services Request Form.

Globally, 10.74 million people are in prison—as pre-trial/remand prisoners or convicted and sentenced. A prison sentence protects the community, punishes the offender, and deters similar offences, with rehabilitation a critical component of the criminal justice system. As well as addressing the factors that contribute to re-offending, entering prison provides an opportunity to access healthcare and address health issues. However, the problems in prisoners’ lives are complicated. Compared to the general population, people in prison are often from economic and socially disadvantaged backgrounds, with lower levels of literacy, poorer physical health and high rates of mental health problems, chronic health conditions and communicable diseases, such as Hepatitis C. Research also shows that, when not in prison, people who have been incarcerated are more likely to use illicit drugs, and engage in tobacco smoking and risky alcohol consumption [1, 2].

Good health is key to successful rehabilitation—and prison can provide the space and time to address health needs. However, the delivery of healthcare in prison is also not straight forward, due to security regimes and differences between prison and healthcare systems and cultures. The United Nations Basic Principles for the Treatment of Prisoners states that: “prisoners shall have access to the health services available in the country without discrimination on the grounds of their legal situation” [3], with this principle highlighting that prisoners should have access to the same level of healthcare as the general community.

1 How Prisoners Currently Access and Experience Healthcare

Surprisingly, across the globe, there is relatively little research regarding prisoner health services. In part, that may be in part due to the diversity of healthcare provision and processes between institutions, and differences in healthcare systems across countries. A recent review identified that the research conducted has been focused more on the prevalence of specific health needs, rather than on the services required to meet those needs [4]. This resulted in relative consensus of the typical health issues of prisoners, but has not addressed how to ensure prisoners receive the healthcare to treat, alleviate, or manage these conditions whilst in custodial settings.

The task of providing healthcare to prisoners has many interrelating factors that can pose challenges, with “the delivery of effective health care to prisoners is dependent upon partnership between health and prison services” [5 , p. 119]. As White et al., [6] explain:

The provision and ethics of health care may be compromised by the physical design of the prison, the institutional policies and practices restricting movement of prisoners and practitioners, the focus on maintaining control and security, and the very purpose of the prison and prison system itself (pp. 12-13).

The complex nature of institutions such as prisons, has a significant influence upon healthcare practice, processes and procedures. Of the few studies that have attempted to outline the process for accessing healthcare whilst in prison, it appears that within Australia, the USA, Britain, and Canada—when not requiring emergency care—prisoners are required to complete a written request. This process often results in significant wait times, whilst the request moves through the prison and healthcare administrative processes [7]. Additionally, this requirement to complete a written request for healthcare may impede access, as prisoners typically have lower levels of literacy and may finding writing about their health concerns challenging [8].

Interviews with ex-prisoners about their experience whilst in prison identified that some were hesitant to submit healthcare requests to officers (guards), with the perception that the officers had the liberty to decide to process requests or not [9]. The ex-prisoners were more satisfied with healthcare provision in less secure prisons, and when their healthcare needs were eventually met. Communication, or lack thereof, between prisoners and healthcare services has been identified as a key issue, with prisoners citing restrictions on being advised about appointments [10]. Common challenges with providing healthcare in prisons are staffing, funding, security regimes, and prison and healthcare culture clashes [4], all of which can and should be addressed to ensure prisoners receive healthcare similar to the general populations.

2 Why Prison Healthcare Matters: And Current Priorities

More than two decades ago now, and based on the UK system, Watson and colleagues [11, p. 3] outlined a number of ‘ingredients’ for consideration in the design of a healthcare model for prisoners:

• 1. Health promotion as a unifying concept for health care in prisons incorporating health needs assessment;

• 2. Health screening on arrival in the prison system incorporating standardised protocols and validated instruments with an emphasis on mental health;

• 3. Partnership between prison services and health services;

• 4. Telemedicine as one mode of delivering health care in prisons;

• 5. Education of prison staff, including healthcare staff about the health needs of prisoners; and

• 6. Developing a model of prison health care which looks beyond the prison environment to the communities which the prison serves.

These ingredients remain relevant now, as in a systematic review of re-entry programs, Kendall et al. [12] identified health services in prison as vital in preventing re-entry. Ensuring prisoners have good access to healthcare not only assists with improving their health, but could provide further benefits for re-integration back into the general community—setting prisoners up well for life outside prison.

Flanigan’s [4] review of prison healthcare in the United Kingdom concluded it was viewed as easier to access healthcare in prison than in the general community (due to cost, access, stigma etc), which provides an opportunity for prisoners to address health concerns whist in prison. Imagine, for example, a person who is overweight who does not have the health literacy or financial resources to make healthy food choices, enters prison where healthy, balanced and well portioned meals are provided—and there is potentially support for learning how to grow vegetables and cook healthy meals. They could leave prison healthier, with new skills that would support better life choices. Or a person with an opioid addiction may benefit from being placed on the opioid substitution scheme, which could help them overcome their addiction and provide broader positive impacts on their life.

As a key role of prison is to facilitate rehabilitation, prisoners should be given the opportunity to develop skills that could help them function well when re-integrating into the community—including enhancing their health. Establishing good ‘recovery capital’ for prisoners before re-entering the general community can include resources such as housing and employment; pro-social relationships; pro-social identity; coping skills; community engagement [12]. Addressing some of the key health issues facing prisoners might also help build their ‘recovery capital’. Alongside continuity of care models that continue outside of prison, most research on the delivery of healthcare inside prisons has focused on the alternative model of telehealth. Telemedicine has the potential to provide practical and economic benefits by reducing costs through reducing the need to transport and accompany prisoners to appointments outside the prison, to recruit healthcare professionals that do not need to physically attend the prison or have a prisoner attend their practice. Telemedicine trials within prisons have been positive, with most indicating that the healthcare provided was deemed equivalent or improved quality of care, and telemedicine was even preferred by some prisoners [13].

3 Rethinking the Prison Health Request Process: A Queensland Case Study

Other than trialing telemedicine, however, very little research has been conducted to help practitioners understand how to best design and deliver healthcare services in prisons. In this project, therefore, our focus was to enhance the prisoner health request process, using co-design in one case study prison in Queensland, Australia. A collaboration between Queensland Health’s Office for Prisoner Health and Wellbeing, the case study prison, Health Consumers Queensland, this project was designed to enhance access and communication by redesigning the health request form—to be trialed in one regional men’s prison and then rolled out. The project responded to a Queensland Offender Health Services Review identifying barriers to accessing timely health services, and the use of digital technologies in the Prison System, discussed below. A key issue identified was the lack of agency that prisoners felt in procuring solutions to their health.

Right now, 41,000 Australians are in prison—8657 in Queensland [14, 15]. Australian prisons include high rates of Aboriginal and Torres Strait Islander peoples (29% of prisoners; [14]), which presents a particular cultural and health context. Prisoners, in general, have lower levels of literacy than the general population with 63% of prison entrants in 2018 having an education level of Year 8 or below (aged 13–14 years; [16]), which may add further complexities to healthcare access. And, unfortunately, within 2 years of being released from prison, 45% will be back behind bars [17].

4 The Queensland Prison Health System

Eight Hospital and Health Services are contracted by Queensland Health to provide primary health services in 14 correctional centres throughout the state of Queensland. The nature of these primary health care services is outlined in a Memorandum of Understanding between Queensland Health and Queensland Corrective Services (QCS). In summary, these primary health care services are like that provided by a general practice, in addition to various specific clinic health services including pathology, dispensing medications, and administering medications, as well as (often limited) access to a dentist.

The current system is focused on a paper-based Health Services Request Form, in Fig. 1 to access non-emergency healthcare, prisoners request this paper form (from a guard or health provider), write in their health concern, and submit it once a day, where it is processed, and they receive an appointment. Access to these forms is either through a request to a QCS officer or a member of the health staff. Prisoners generally have limited literacy, yet this process is reliant on prisoners being able to convey key information about their health, in writing, which health staff then use to determine when they should be seen (a triaging process). Confidentiality issues also arise if prisoners request assistance to complete the form. Upon receipt of these forms, health staff triage the requests based on the nature of the issue described in the request.

Fig. 1

Current Health Services Request Form, with annotated comments

5 Barriers to Accessing Timely and Appropriate Health

A recent Queensland Offender Health Services Review (OHSR) identified that there are numerous barriers to accessing timely and appropriate health services for prisoners, and proposed to review the service evaluation and development system and work to increase offenders’ access to health services. Some of the barriers fall within Queensland Health’s area of change (e.g., HHS service agreements), and some are regarding QCS processes (e.g., the structured day and infrastructure). The key issues identified that specifically relate to prisoner medical requests and their access to health services include: (1) Limited writing skills providing a barrier to completing the Health Services Request Form, (2) confidentiality issues arise if they request assistance to complete the form, (3) Prisoners report a lack of communication and feedback regarding health requests, and (4) Some prisoners resort to self-harm to get attention from health centre staff.

Similar issues were also identified during consultations with Prisoner Advisory Committees (PAC) conducted by Health Consumers Queensland (HCQ). In early 2021, HCQ conducted 19 PAC discussions in 7 correctional centres across Queensland to listen to the prisoners about their experience of prison health services to find out what is working well, or not so well, and to hear their suggestions for improvements. From a consumer perspective, the Statewide PAC consultations identified six key themes that emerged from the feedback across the seven Correctional Centres visited:

• Medication Management—pain relief, prescription practices and administration

• Dental—Access and treatment options

• Medical Requests—Access to and response

• Communication and Culture

• Mental Health—Access and treatment options

• COVID-19 and vaccination.

In regard to Theme 3: Medical requests, key issues identified were (1) not receiving a response to healthcare requests; (2) increased wait times due to higher prisoner numbers but not higher health staff numbers; (3) healthcare requests only being handed in during morning medication rounds; and (4) difficulty completing the form for those with low literacy levels, English as a second language or illiterate, particularly as they understand triaging is based on what is written on the form. Lack of communication and feedback from health centre staff regarding a prisoner’s request for health care was also raised as one of the most significant issues identified from the HCQ consultations. In considering this feedback and data some recurring issues with the process include:

• Access to medical request forms is contingent on staff providing these forms;

• Submission of the medical requests are reliant on staff (QCS or Health staff) to pass on the forms;

• Prisoners generally have limited literacy; and

• Do not know if their request has been received or what, if any, action is going to be taken.

Taken together with the complaints data, this suggests that—alongside increasing service availability—providing timely response to medical requests (and information on wait times) may be one strategy to improve patient satisfaction and reduce complaints.

6 Redesigning the Prison Health Request Form

To address some of the key issues identified above, this project redesigned the prison health request process through a design-led, co-design process. As well as interviewing senior sector stakeholders (policymakers and prison clinicians), over two days, co-design workshops were held at the case study site—a regional Queensland men’s prison—with groups of offenders (four one-hour workshops), healthcare staff (a one-hour workshop) and prison officers (a one-hour workshop, plus informal conversations), who were engaged in collaboratively developing, testing, and revising ideas and potential solutions for the healthcare request process.

Participatory co-design is about designing with, not for, people; co-design emphasises that—as experts of their own lived experience—end-users must be actively engaged in the design process. The aim was to (1) understand the process and identify key pain points; and (2) collaboratively develop, test, and revise ideas and potential solutions for the healthcare request process. The interviews and workshops uncovered the [1] health request process and [2] key pain points in the existing customer service journey (factors that currently restrict access to health services), many of which were the same as those identified by the HCQ PAC consultations conducted in early 2021. The key pain points are provided below with the main issues for each step outlined in Fig. 2 and Table 1.

Fig. 2

Prison Health Service Process Steps

Table 1 Pain points in health assessment, access and form process

There are pain points at all stages of the prisoner health request process. The overarching issues are lack of communication and communication breakdowns. The system pain points are well understood by the custodians of the existing processes and systems, with a strong desire for new, consumer-centric processes supported by a compassionate culture among health and correctional services staff—it is, we acknowledge, more complex than simply designing a new form, there is a need to address the culture and norms that give rise to some of the most significant pain points. As there was limited information regarding where their form was in the system, prisoners would either: refrain from submitting ‘The Form’: “unless it’s real bad, you don’t bother… you learn to live with it”; or re-submit the form multiple times (which clogs up the system), or ‘play up’: “brothers in pain… they play up for them to call a code”. These negative outcomes could be addressed with clearer communication between the health staff and prisoners, or greater transparency with the process.

Through visually “journey mapping” the steps in the prisoner health request process—from the views of all users (offenders, officers, and clinicians)—we re-designed the Health Services Request Form, using visual icons to more clearly communicate information, building in feedback loops and indicating average waiting times.

7 The New Visual Form

Health records form a permanent account of a patient’s illness and their clarity and accessibility are essential for effective communication between healthcare professionals and patients [18]. It is important to note that the electronic patient record has not yet fully replaced the paper-based one in most medical systems. Electronic documentation continues to be used in addition to residual paper-based records. When properly understood and used by patients, these forms are valuable documents for investigating and treating serious to moderate health complaints and ongoing health issues. In the highly controlled space of a prison, the paper-based system is the primary system, and our research above explains why the adoption of a digital system is especially complex. We chose, therefore, to tackle the redesign the procurement form as the first part of a multi-staged approach to a new visual system. The form has been redesigned using icons and pictograms to [1] provide access to those with low literacy levels and [2] be more suitable for future digital applications as part of a screen-based icon-system. Figure 3 shows the modified form, which is purposely visual (to address lower literacy levels) and key changes.

Fig. 3

Re-designed Visual Health Request Form

The predominate design feature of the new form is the use of icons and illustrations. According to Hajar [19]: “Oftentimes, an illustration transmits the pertinent, useful, and important information much more effectively than words.” A key issue identified by prisoners was that they did not understand some of the services offered, and so the re-designed form uses a set of custom designed icons that visually describe these options. Prisoners also noted low-literacy levels limited their ability to describe pain points; thus, we provided a visual of the male figure to enable the user to pinpoint areas of pain and/or discomfort. The most notable addition to the form, which was directly identified through the co-design process, is a section on indicative wait time indications, so prisoners have a better understanding of when they might see the specific health practitioner. As the form needs to be reproduced internally, we used simple line drawings in black and white so that images would be clear when printed by photocopier/personal printer and is set in an A4 template as a standard paper size for processing and filing.

As a first iteration, this paper-based form enables prisoners to become used to the visual language and approach. An A3 poster was also produced explaining the new system, to be displayed in common areas as part of an onboarding experience. While Covid-19 disruptions have delayed full deployment and testing, initial responses from healthcare professionals and prisoners indicate that this re-designed form will help improve timely access to healthcare for prisoners.

Elements of the form can form a visual system that can be applied across a range of outputs, lending itself to future applications in a digital system. We are exploring how this can be applied across tele-health and screen-based forms. The bottom of Fig. 4 gives an indication of how the graphic system might be applied to a digital health system.

Fig. 4

The paper-based system (top), and the concept for applying the visuals and icons to a digital health system (bottom)

8 Conclusion

This project revealed that service pain points were well understood by both end-users and custodians of the existing processes and systems, with a shared desire for new, consumer-centric processes supported by a compassionate culture among health and correctional services staff. Prison health is a complex system, with change challenging to implement; however, thoughtful, and innovative service (re)design starts with genuinely listening to and understanding the experience of end-users, with the new visual form—currently being trialed—a critical step in delivering more prisoner-centric healthcare.