Continuing the conversation: practical strategies to enable acceptable and feasible health research in prisons

Abstract

Within the unique structural, procedural, and social contexts of prisons, there are substantial challenges to conducting health research. Sharing approaches that facilitate study planning and implementation could support future research and foster critical discussion regarding best practices. During a qualitative study, we developed strategies to navigate the challenges of conducting research with participants who were currently incarcerated in prisons across Canada, including in participant recruitment, participation, and benefits. We found that creativity, flexibility, and responsiveness were key to surmounting barriers, mitigating risks, and optimizing study value. Our findings can be of value to other people conducting health research in prisons.

Text box 1. Contributions to the literature
• For many reasons, prisons are a complex setting in which to conduct health research, and there is a paucity of literature about best practices.
• In this manuscript, we describe the challenges encountered in conducting remote qualitative health research in the prison setting and concrete strategies to address these challenges, based on our work with the Canadian federal prison system.
• This manuscript could support health research within this often-overlooked population.

Introduction

There are substantial challenges in conducting health research within prison systems, which may preclude research or compromise research quality, and could be associated with potential harms for participants and missed opportunities for benefits. Barriers to health research in prisons relate to funding, logistics including access to people in prison, minimal knowledge of prison research conduct and prison systems (especially as it applies to varying prison cultures), communication to establish partnerships, ethical challenges and ethics review board processes and requirements, and laws and regulations [3–6, 11]. While some of these obstacles have been implemented deliberately to protect people who are incarcerated from the harms of research, in recognition that they may be vulnerable to exploitation [15, 21], these increased restrictions may also discourage research participation [6, 23]. The barriers to research and consequent exclusion of this population from research contribute to gaps in knowledge, which may preclude improvements in health care delivery and health outcomes.

Exchanging knowledge of strategies to enable prison health research is important to support acceptable and feasible research, however, there is a paucity of conversation on this topic in the published literature, especially regarding conduct of remote research. This information could be used to define both existing and best practices, i.e. what has been done and what should be done, on which researchers and people defining acceptable and feasible practices for prison authorities and research ethics boards could draw. The challenges and strategies described in the literature are often limited in scope to in-person conduct of research [3, 6, 9, 18, 22].

Purpose

In this article, our purpose is to describe strategies we have previously implemented in a qualitative research project to support the inclusion of people who were currently incarcerated as participants, including related to study protocol development, and recruitment of, participation of, and benefits for study participants who were in prison at the time of the study.

Project context and article development

In the context of an implementation science project focused on developing health surveillance in the Canadian federal prison system, we conducted a qualitative health research project to define interest-holders’ needs and priorities for prison health surveillance. Interest-holders are “groups with legitimate interests in the health issue under consideration” [2]. In Canada, people sentenced to two years or longer in custody are incarcerated in the federal system. The federal prison system administers institutions nationwide, including prisons for men and women and at all security levels, regional treatment centres for people with serious mental health conditions, and Indigenous healing lodges. As researchers in this project, we were funded by a federal government grant to enhance health surveillance in the federal prison system; we were not employed or otherwise paid by the correctional authority.

Health surveillance is “the ongoing systematic collection, analysis, interpretation, and dissemination of health data for the planning, implementation, and evaluation of public health action” [7]. Within Canada and other countries, health surveillance for people in carceral systems is limited, as people who are incarcerated are often excluded from national health surveillance initiatives and from health data systems [1, 19, 20]. Recognizing that people who experience incarceration have poorer health status than others in the community, including chronic disease, infectious disease, mental health and addictions, and negative social determinants of health [10, 16], strengthening prison health surveillance could promote improvements in “health promotion, health protection, disease and injury prevention, and healthcare” for this population [13].

In the qualitative research project to understand interest-holder needs and priorities for future health surveillance, we conducted focus groups and interviews with 61 participants, including people with lived experience of incarceration- both people who were incarcerated at the time of the study and people who had been incarcerated previously, prison health care providers, researchers, and people in non-governmental organizations that conduct relevant advocacy and service delivery. The question guide included questions about topics like the most important health issues in Canadian prisons, about what health issues participants would want more information, and how they would want to access this information in the future. In this paper, our focus is not on the health surveillance system itself, on the project structures developed to support implementation [13, 14], or on the results of the qualitative study (which will be reported in another manuscript, which is currently in preparation). Rather, the focus of this paper is on the strategies we developed as we navigated how to include people who were currently incarcerated in the qualitative study. While the qualitative study overall included more categories of interest-holders, this paper specifically focuses on strategies supporting the inclusion of participants who were currently incarcerated in this work. Results of the overall qualitative study will be described in another manuscript.

This paper describes the experiences and perspectives of the project team, which included people with lived experience of incarceration, representatives of community organizations that provide support to people who are incarcerated, and academic research team members. Author JG initially wrote a summary of experiences in the qualitative research project. Author CK then organized this information (iteratively and in consultation with other project team members) to describe the challenges encountered and strategies we enacted to overcome the challenges.

Findings

Our overarching approach was to engage broadly to support study development and implementation, and we developed specific strategies to support study implementation, as summarized in Table 1 and described in the text below. Through discussion and in the context of established relationships, we came to consensus in our engagement regarding acceptable and preferred strategies.

Table 1.

Overarching approach and specific strategies implemented to support participation of people who were incarcerated in a qualitative research project

	Challenges	Strategies
Broad engagement to support study development and implementation	Lack of knowledge about processes and operations across all prisons, and about how to engage people who are incarcerated in research	To support protocol development, we engaged with prison authority staff, people with lived experience of incarceration, and people who visit prisons regularly in their program and advocacy work
Specific strategies	How to share recruitment information across prisons nationwide, and lack of trust and perceived trustworthiness of researchers	We recruited participants through snowball sampling, through an intermediary introduction provided by a person known to potential participants
	Not allowed to send stamps into prison for participants in custody to use to mail materials to us	In the package mailed to participants, we included pre-printed envelopes with the researchers’ address, which were postage paid (instead of sending a stamp)
	Preference for written consent from the research ethics board in the context of challenges with mailing to and from prisons and potential literacy challenges	We mailed study packages to obtain written consent when possible, but also obtained permission from our research ethics board to obtain recorded verbal consent when needed or preferred
	Difficulties in arranging a time to conduct interviews due to inability to call participants in prison directly	We set up specific times each week when research staff would be available to answer calls (referred to as “office hours”), and shared information on these times in the mailed written materials
	Not appropriate for participants to pay for phone use to participate in research	We set up a toll-free 1–800 number for participants to reach researchers, to enable data collection by phone
	Access to phone numbers blocked unless approved (at the individual participant or prison level)	We arranged to add the toll-free number to common access calling lists for each prison with potential participants
	Federal prison system policy prohibits financial incentives for research participation	Participants were able to select from a list of relevant non-governmental organizations or their prison’s “Inmate Committee” to donate an honorarium on their behalf
	Participants may not be able to demonstrate their contribution to the study, which may be important to them	We provided the option for participants to receive a formal certificate acknowledging their study participation, with the name and logo of the university that led the study on the certificate

Broad engagement to support study development and implementation

To develop the study protocol, we engaged with diverse interest-holders with relevant knowledge, and in particular, with people who were incarcerated to understand potential study barriers and opportunities. To support this engagement, we leveraged structures that we had developed to support the development of the implementation science project on health surveillance, i.e. a committee to engage with the prison authority on project development, a Project Advisory Committee that included five people with lived experience of incarceration and representatives of five non-governmental organizations that support people who are incarcerated and their health, and a Scientific Advisory Committee that included researchers with experience in prison health and health surveillance and focused on relevant research and knowledge translation questions [13], these project structures were built using project team’s networks in prison health research, both through direct invitations and invitees bringing in others, and through contacting organizations directly to inquire about interest in joining a team. To inform the original study protocol and troubleshoot around issues encountered during study approvals and implementation, we engaged with partners in the prison authority and with members of the Project Advisory Committee and Scientific Advisory Committee to understand complexities of the system, what would be acceptable for the prison authority, what procedures would be feasible and acceptable from prison and staff perspectives, and what would be feasible, acceptable, and desirable for people in custody. Within the federal prison system with which we were working, there are prisons across the country, in different time zones, and with different security levels, which poses challenges for developing universal study procedures that would work across all prisons, for all potential eligible participants, and for the study staff. We engaged with people with relevant experience (whether through incarceration, employment, or advocacy work) in various federal prisons to understand this context. The federal prison system provided information on what would be acceptable to them from an approvals perspective, so that we could make sure that our protocol met all requirements, thereby preventing unnecessary delays in approvals and protocol revisions. Members of the Project Advisory Committee and Scientific Advisory Committee provided information regarding what may be feasible based on their experiences in custody or in working with people in custody, such as how to inform people about the study, contact people to obtain informed consent, collect data, and follow up. They also provided advice on what may be acceptable or desirable for people in custody.

In summary, engagement with knowledgeable interest-holders was critical to support protocol development and approval, study implementation, and participation.

Strategies to support recruitment and participation of people who are incarcerated

Our interest-holder engagement informed the decisions we made regarding strategies to support participant recruitment, informed consent, participation, and benefits. Most strategies described in this section are specific to conducting research from a remote environment, which is what we used for participants who were incarcerated, although some strategies would work for in-person research as well.

To enable participation within the options of what was feasible with the project resources, federal prison system policy, and the national scope of the project, we gave participants a choice of either conducting an interview over the phone or providing written responses to the same questions on a printed questionnaire and mailing their responses back to the researchers. Using email or internet-based resources was not a feasible option as people who are incarcerated in these prisons did not necessarily have internet access. We therefore had to use alternate options, and we decided based on our engagement that including both phone and print options would best support opportunities for participation.

We decided to mail packages to potential participants so they could review the study information, decide whether to participate, provide written consent if they wanted to and were able to, and return the questionnaires via mail if they preferred that over conducting an interview by phone. We wanted participants to send back study materials, however, sending stamps into these federal prisons is not allowed based on the policy of the prison system. We therefore provided an envelope printed with prepaid postage, which could only be returned to the researchers’ address.

For participant recruitment, we decided to use snowball sampling. This was, in part, in recognition of historical and contemporary challenges in trust of researchers by some people who experience incarceration [11, 12], including for specific subpopulations that are over-represented in Canadian prisons such as people who are Indigenous, recognizing Canada’s colonial history and systemic discrimination [8]. Snowball sampling also helped address challenges in disseminating information about the study across prisons and to potential participants nationwide. We leveraged relationships of the Project Advisory Committee members as specific seeds (i.e. initial people to include as participants themselves and/or to recruit other participants). The Project Advisory Committee members checked with potential participants about the study, and for anyone interested in participating, the Project Advisory Committee members either provided study staff contact information (phone number and calling information) to the potential participants or provided potential participants’ contact information (names and mailing addresses) to the study staff, with the agreement of the potential participants.

For informed consent, while our academic research ethics board preferred signed consent, due to the complexities of sending and receiving mail in prisons and recognizing higher rates of low literacy in people who are incarcerated, the research ethics board gave us permission to review the information and consent form verbally when preferred by the participant, and to accept recorded verbal consent. Also relevant to consent, through discussions with our Project Advisory Committee, we identified challenges associated with maintaining privacy and confidentiality; since prison staff may monitor mail and phone communications, it was not possible to guarantee participants’ privacy or confidentiality on phone calls or in mail sent to or from the prison system, and we explicitly acknowledged this risk in study information and consent materials.

We also identified challenges with arranging interviews. Typically, in primary data collection in other settings, we would call the participant to set up an interview at a time that would work for the research team and the participant. In this prison setting, however, it is not possible to directly call potential participants. We solved this issue by setting up a 1–800 toll-free number that potential participants could call to reach study staff; we chose a toll-free number as otherwise the participants would have to pay for their phone calls, and due to federal prison system policy, we were not allowed to reimburse them for these charges. However, people in Canadian federal prisons can only call numbers that they have been personally approved to call or those which are on an approved set of phone numbers commonly known as “common access calling lists.” So, after setting up the toll-free number, we arranged to have our number added to the common access calling list at each prison at which there was a potential participant. We leveraged relationships with prison authority research staff to identify appropriate contacts at relevant prisons to request to add the number, and in some cases we were able to have regional leadership approve having the number added to the common access calling list for all prisons in a region. There were also challenges with timing, for example if a person who was incarcerated called the 1–800 number at a time when no research person was available, they would not be able to simply leave a phone number and a time to be called back for an interview, as would be typical for potential participants in many other settings. Through discussions with Project Advisory Committee members who were incarcerated or often visited people in prisons, we decided to set several dedicated time windows (“office hours”) when potential participants could call study staff for interviews or questions, which would likely work from a prison operational perspective and across multiple time zones, and so that research staff would not have to be “on-call” at all hours. We specified these time windows in the study information package that we mailed to potential participants. During these hours, we would ensure a staffperson was available to respond to any calls. However, due to the need for flexibility with a population managed by policies beyond their own control, we also attempted to answer any calls outside of these time windows whenever feasible. Calls were about evenly distributed between the call windows and other times.

There were also challenges with participant honoraria and acknowledgment of participation. In many research settings, participants receive honoraria for their time and participation, however, many prison authorities, including the federal prison system with which we were working, have policies or procedures that prohibit financial incentives [17]. We asked the prison authority if we could provide a financial incentive for participation, and they said no. We then engaged with members of our Project Advisory Committee and Scientific Advisory Committee to discuss other potential incentives that would be respectful and of value to the participants. We identified and implemented two strategies that were acceptable to the prison authority, the research ethics board, and people with lived experience of incarceration or advocacy for people who are incarcerated. First, we developed a list of not-for-profit organizations that were involved in program or advocacy work related to people in prison, and following data collection, we sent a letter of gratitude to participants and invited them to indicate if they wanted us to donate an honorarium on their behalf to an organization on that list or to the “Inmate Committee” at their prison. Second, we sent participants a formal certificate of research participation that included the name and logo of the university at which the study was based, as well as the names of the principal investigator and project coordinator. This certificate demonstrated participants’ valued and valuable contribution, and could potentially be used to advance participants’ interests, e.g. at a parole hearing to demonstrate their study involvement as a type of societal contribution.

Lessons Learned

In the development and implementation of this health research project in a Canadian prison authority, we encountered various challenges and barriers. Through engagement and iterative work, we were able to develop creative, concrete strategies to address these barriers and support participation in a research project.

A key finding from this project was the value of broad engagement with diverse interest-holders (including people with lived experience of incarceration, community advocates and researchers, and correctional health staff and leadership) to inform the overall study design and to address logistical and ethical issues to enable participation, prevent harms, and support value. We also identified the need to work iteratively to develop the study protocol, which involved flexibility and responsiveness. We recognize that some of the strategies described may have limited relevance in other jurisdictions, and may require tailoring for relevance and appropriateness for varying prison contexts and cultures. Engagement with local interest-holders will support necessary tailoring for specific jurisdictions.

Deliberate scholarly conversation could help reduce the barriers and mitigate the challenges associated with health research in prisons. Sharing perspectives, approaches, and strategies to enable, promote, and support the participation of people who are incarcerated could advance our understanding of acceptable and feasible practices and help identify best practices.

We invite our colleagues to share practical as well as conceptual strategies and solutions they have used to support research in this field.

Authors'contributions

IMG, NK, and JM provided information about prison procedures and logistics to develop our strategies. JG designed the list of strategies and study implementation plan, and led the study implementation. CK wrote the first draft of this paper with supervision by FGK. All authors read and approved the final manuscript.

Funding

The overall project was funded by the Public Health Agency of Canada’s Enhanced Surveillance for Chronic Disease Program (ESCDP), arrangement #2021-HQ-000098.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

This manuscript describes project methodology and does not include human data or participants, so research ethics board assessment was not required. For the qualitative study described, we received ethics approval (Hamilton Integrated Research Ethics Board, Project #14099), and for that study, participants provided informed consent (written – or audio-recorded in special circumstances for some of the participants who were currently incarcerated, as per ethics board approval, due to challenges with mail in the prison setting).

Consent for publication

Not applicable as no participants’ information is presented in this manuscript.

Competing interests

The authors declare no competing interests.