This case study describes the complex process needed to obtain all necessary institutional permission to engage in a longitudinal study on social housing and health, which was housed at two different research institutions, and involved data collection in four different municipalities, each with its own culture and practices around research ethics. This case details the multiple steps that researchers must take to make sure that their data collection is in conformity with privacy laws and with institutional ethics protocols, and demonstrates creative solutions that may be entertained when the target population is a ‘hard-to-reach’ group whose membership is known only to institutional partners.
By the end of this case study, you should
- Understand how codified research ethics principles and privacy laws may impact data collection
- Understand how ethical principles and privacy laws, while internally consistent, may at times prove to be in conflict with other protocols and laws
- Understand how the perception of coercion could undermine a study's goals and how study protocols can be adjusted to prevent this
- Be able to list some strategies for working within these parameters
This case study documents the steps, negotiations and agreements that were needed to arrive at a recruitment process for a multi-site, longitudinal study on affordable housing and health. The main research question of the GTA West Social Housing and Health Study is whether living in affordable housing offers health benefits to low-income individuals and households. The site of this research is southern Ontario, Canada, specifically the cities of Toronto and Hamilton, and the two regional municipalities of Peel and Halton. Together, these four municipalities form the western portion of the Greater Toronto Area (GTA), or the GTA West.
In Canada, the definition of affordable housing is housing where shelter costs are not more than 30% of one's gross income, where shelter costs include rent or mortgage, property taxes, heating and electricity (Canada Mortgage and Housing Corporation, 2009). Excluded from this figure are food, television, Internet or other costs unrelated to the housing unit itself. The utility of this definition and the 30% benchmark have long been disputed (Hulchanski, 1995).
In Ontario, individuals and households can apply to receive a housing subsidy. Most subsidies are allocated to housing units, rather than to people, and most subsidized units are publicly owned; therefore, this system is sometimes referred to as ‘social housing’, to distinguish it from private housing, for which one pays full market rent. While there are some residents in social housing who do pay full market rent, they are a small minority.
Those who receive a subsidy to live in a social housing unit have their shelter costs fixed at a rate of 30% of their income, and for this reason, they are considered to be receiving rent-geared-to-income (RGI) housing. This case study deals with the complexities of this RGI application system.
Study Partners and Purpose
Social housing in Ontario is owned and managed by municipal entities known as Consolidated Municipal Service Managers. In order to conduct a study of people receiving RGI housing, it was necessary to partner with the municipal housing service managers, or their delegates. Representatives from the four municipal housing managers partnered with and supported the study from its earliest days, and constitute the data's key users. The research was coordinated by two institutions: St Michael's Hospital in Toronto coordinated the data collection for the Toronto and Peel Region sites, while McMaster University in Hamilton coordinated data collection in the Hamilton and Halton Region sites.
The purpose of the study is to determine whether there are changes in the general and mental health of adults aged 18–75 years as a result of receiving RGI housing. People who are currently on the waiting lists for RGI housing in each of the four municipalities are recruited into the study, and baseline data are collected using a structured questionnaire that includes questions about general health status; depressive symptomatology and psychological distress; housing and neighborhood quality; affordability; other relevant, non-housing stressors (e.g. work stress, general stress); social support; and coping style. A subset of the baseline participants are also invited to do a semi-structured qualitative interview that probes issues such as their motivation for applying to RGI housing, and what they hope might be different in their lives, should they move into a social housing unit. After the baseline data are collected, if a household is placed in RGI housing within a year, they are considered part of the ‘intervention’ group, and follow-up interviews are conducted at 6, 12 and 18 months after moving. Those who are not housed within 1 year are initially allocated to the ‘comparison’ group, and follow-up interviews begin at the same intervals: 6, 12 and 18 months. A member of the comparison group can later become a member of the intervention group if they receive RGI housing, at which time follow-up as an intervention group member begins.
The key partners in the GTA West Social Housing and Health Study are the two research institutions and the municipal housing managers (or their delegates) from the four municipalities. All stakeholders needed to agree on a standard recruitment process. However, each institution has distinct legal and institutional obligations for privacy protection and stewardship of personal information, and, as will be seen in this case study, at times, these obligations—while never in true conflict—are not smoothly aligned. These at times competing obligations resulted in several iterations towards a complex recruitment process that ultimately had two substantial benefits for the study: the research questions were refined to ensure that the findings would have maximum utility value, and the agreed-upon recruitment process satisfied multiple legal and ethical requirements.
Because of the high demand for RGI housing in Ontario, all municipalities in the province are required by provincial legislation to maintain waiting lists. These lists do not operate like a simple queue; there are many complexities based on factors such as the composition of the household, the composition of the housing stock and the presence of individuals on ‘Special Priority Policy’ lists whose need for housing is accelerated. For example, there are unique lists and service pathways for applicants who are experiencing domestic violence, or those with acute medical needs. Anyone not on one of the priority lists is on the so-called ‘Chronological’ list. According to a survey of municipalities across Ontario, depending on the municipality and the composition of the household, the average wait time to be offered an RGI unit can be anywhere from 1 month to 10 years from the time of applying (Ontario Non-Profit Housing Association, 2013). The length of time spent waiting for RGI housing has multiple causal factors, including high demand, which has increased since the global recession that began in 2008, and the limited turnover rate of housing units (Ontario Non-Profit Housing Association, 2012).
There have been no prospective, longitudinal studies done in Canada on the effects of affordable housing on individuals, that is, studies that track changes in individuals as they move from less to more affordable housing. This study uses quasi-experimental methods, and makes use of a ‘natural experiment’ whereby, over the course of this study, some households will receive the intervention (affordable social housing), while others will remain on a waiting list. Thus, a comparison and an intervention group are, in effect, created by the presence of the waiting list. This is distinct from a true experimental design with randomization, where the research team would assign people to either the comparison or intervention group.
The research team operates independently of the municipal housing managers. In other words, the housing managers in no way participate in the collection or analysis of data for this study. This is important, for it prevents the possibility that someone's participation in the research is coerced, or appears to be coerced, on the basis of potential preferential treatment on the wait list in exchange for participation. Indeed, the identity of the participants is confidential within the research team. Municipal housing managers serve in an advisory capacity for the study, and, since they are interested in knowing the extent to which their service can make a difference in the lives of low-income populations, they were equal partners in the design of the study. The housing managers' knowledge of the complexities of waiting list maintenance was integral to determining how recruitment could occur.
Eligible applicants for RGI housing were recruited into this study for a baseline survey while they were on the waiting list. Study participants at this point are living in market housing, at rates that may be unaffordable. Therefore, we are able to determine the extent to which moving into RGI housing has an effect on their health and wellbeing. Moreover, since people are often on the waiting list for many years, our study is also able to identify differences between the comparison and intervention groups.
Certain exclusion criteria were applied, related to safety and methodological concerns. People on the domestic violence priority list were excluded, as there was concern that contacting them prior to their move into RGI housing might compromise their safety, if, for instance, they were still living with their abuser while waiting for housing. Medical Priority applicants, Supportive Housing and Special Needs Housing applicants (i.e. people needing housing that is adapted for accessibility or other supportive purposes) were also excluded, due to the presence of confounding variables, namely, illness. Also excluded were applicants who were receiving any sort of housing allowance, already living in social housing (e.g. who were paying market rent), moving from one RGI housing unit to another or residing outside of certain geographical boundaries.
The GTA West Social Housing and Health study operates within a context complicated by privacy and ethical issues. In order to recruit applicants across the four municipalities, the researchers and the municipal housing managers needed to protect the privacy of applicants, as well as satisfy the Research Ethics Board (REB) requirements of the two research institutions that housed data collection and analysis. These requirements are not necessarily in conflict or incompatible with one another, but neither are they smoothly aligned. The relevant privacy laws and REB requirements share some key values, namely, the protection of individuals (service users, for privacy laws; research subjects, for academics), the responsible use of personal information/research data (specifically names, addresses and telephone numbers) and accountability obligations for those who interact with that personal information/data. These shared values, and the strong relationship between the municipal housing managers and the research team, were crucial to defining common terms and recruitment processes.
Codified Ethics in Academic Research
Researchers in Canada who work with human subjects must abide by a set of ethical practices codified in the Tri-Council Policy Statement on Research Ethics, Version 2. Any Canadian institution that receives funding from one of three major federal-level granting institutions must abide by the Tri-Council protocols, regardless of the source of funding of any particular project (The Canadian Institutes of Health Research, The Natural Sciences and Engineering Research Council of Canada, & The Social Sciences and Humanities Research Council of Canada, 2013). All major universities, research hospitals and other large research institutions in Canada have access to REBs, sometimes called institutional ethics boards (IEBs) or institutional review boards (IRBs), that formalize the process of ensuring that the research undertaken at that institute adheres to the Tri-Council's standards, and that potential ethical concerns for any particular project are identified and addressed.
Protection of Privacy Legislation for Municipal Agencies
This research was also subject to the Municipal Freedom of Information and Protection of Privacy Act (MFIPPA), an act of the Government of Ontario to standardize the protection of personal information that is collected by the province's municipalities. MFIPPA permits personal information to be used and/or disclosed to third parties for research purposes, so long as (a) the research is consistent with the purpose for which the personal information was originally collected and (b) it can be demonstrated that the personal information is necessary to conduct the research. An additional principle is that only the minimum amount of personal information needed for the research purpose should be used/disclosed. MFIPPA-compliant agreements between the researchers and each of the municipal partners are in place, and these agreements outline the terms by which personal information is disclosed to, and managed by, the two research organizations, St Michael's Hospital and McMaster University.
Competing Needs, Obligations and Interpretation
There are four different sets of tensions that needed to be negotiated and overcome in the recruitment process, owing to the different ways that municipalities and that researchers must protect and be accountable for their data and how, ultimately, privacy disputes are adjudicated in Ontario.
Access to the Waiting List
In order to minimize the amount of personal information that is disclosed to third parties, complete waiting list data were not disclosed directly to the researchers. Rather, a complicated process was utilized (explained further in the section on the recruitment process) by which recruitment letters were sent to potential participants on joint letterhead, but responses were directed to the research team, only.
Guarantee of Confidentiality
The research team is obliged to keep confidential any person's participation in this study. The researchers needed to demonstrate that no one outside their team—in particular, the municipal housing managers—would be made aware of whether or not an applicant to RGI housing has participated in the study, so as to prevent coercion or the appearance of coercion.
The study population is considered hard to reach. Because their housing is often unaffordable and insecure, they may move frequently while they are on the waiting list—possibly in search of more affordable housing options—and they may not have a stable phone number or regular access to a phone. Therefore, the research team needed to make multiple attempts at recruitment and, in some way, to create a process by which the municipal housing managers could supply the RGI applicants' contact information to the researchers, without the housing managers ever learning if those applicants had accepted or declined to participate in the study.
Appearance of Coercion
Participation in the study is entirely independent of status on the waiting list, and the researchers needed to ensure that this fact was clearly communicated to potential study participants, lest there be the appearance of coercion. Failure to clearly distinguish between the two parties might cause some participants to fear that refusing to participate could jeopardize their standing on the waiting list, while others may have thought that by agreeing to participate, their application would be fast-tracked. Neither of these is the case.
‘Consistent Use’ of Personal Information
One of the research institution's REBs was initially concerned that the research team's need for the contact information of RGI housing applicants was not consistent with the use for which that information had been gathered in the first place. Because this study was done in close partnership with the municipal housing managers, who would use the findings for their programming and evaluative purposes, there was no such concern about ‘consistent use’ by these partners. The REB's concern about ‘consistent use’ was a proactive avoidance of possible complaints to the Information and Privacy Commissioner (IPC) of Ontario. An ethical appeal was partly used to allay these concerns.
Specifically, it was argued that by denying permission for the study to proceed based on concerns about potential information and privacy complaints, the often-silenced voices of marginalized individuals would continue to be ignored. Since such a study has never been done in Canada, there is a policy, programming and equity-seeking imperative to determine the extent to which RGI housing could (or could not) be considered a health intervention. There was no question about needing to conduct the study on firm legal ground, since ‘consistent use’ is a matter of interpretation; however, it could be argued that denying the study its REB clearance would further marginalize this population.
The Recruitment Process
After institutional permissions had been secured, a recruitment process was negotiated and refined with the result being an 11-step process, outlined in Table 1. The process was repeated until the target n was obtained. There were between three and six recruitment cohorts in each municipality, and the process for each cohort took between 4 and 8 weeks, with initial cohorts taking longer. The duration of the recruitment process varied by municipality, due to the ease or difficulty of working with each municipality's RGI application data. There was some overlap among recruitment cohorts, whereby, for example, cohort B would be at step 7, when recruitment would begin again at step 1 with cohort C.
Table 1. Recruitment process.
In total, recruitment of 504 RGI housing applicants into the ‘baseline’ portion of the study took 2 years and 5 months across both sites.
Notes for Selected Steps
- Step 1: The de-identified list consisted of a unique identifier which had been assigned by the wait list manager, along with the some demographic information on applicants (the information available varied between municipalities).
- Steps 2–4: In Toronto, steps 2 and 3 were performed by the municipal housing manager, whose database was capable of handling these tasks, and thus, step 4 was eliminated in Toronto's recruitment.
- Steps 5 and 7: The invitation letter contained contact information, a language sheet and a reply card addressed to the appropriate project team. The housing manager's contact information was not included in this invitation, to guard against the applicant accidentally contacting them, indicating their desire to participate (or not) in this study.
The invitation requested that applicants contact the project team, even if they did not wish to participate, so that their response could be counted as a formal refusal, and they would not be contacted again (at step 11). When applicants mailed in a reply card or phoned the research office, they gave the research staff their name and relevant contact information—the first time such identifying information was available to the researchers. Only the research team knew whether someone had accepted or declined participation. At this point, the research team only had the information that the applicant had actively given during recruitment, and was not able to match this information to the housing agency's unique identifier.
- Step 8: This Privacy Notice functioned as a third attempt to obtain active consent from invited applicants. Failure to reply to this notice in 21 days was deemed indication of passive consent to allow the waiting list managers to release the applicant's phone number. This Privacy Notice contained only the contact information of the relevant housing stakeholder, and not of the research team, to guard against the applicant accidentally informing the research team that they did not wish to have their identifying information released.
One of the principles motivating this complex recruitment process was that applicants' decision to participate in the study would remain within the research team, and never be disclosed to the municipal housing managers. This multi-step recruitment process was felt to provide applicants with ample opportunity to indicate their preference, or request that the housing agency not disclose their contact information.
Recruitment Differences across Sites: Responding to Research Ethics Board Concerns
Each of the two research institutions where this study was coordinated has its own history and culture, which is reflected in their differing concerns and requirements. One of the REBs was concerned that a letter containing the logos and names of both the research institution and the housing manager might be confusing, and might appear to be coercive; that is, that RGI applicants might feel that their participation in the study would reflect positively on their application and advance their position on the waiting list, or that their non-participation would negatively affect their status on the waiting list. Moreover, they were concerned that applicants would ignore the original two invitation letters and the privacy notice, and then be upset with the study team for contacting them. The REB's concerns were particularly strong because the group being contacted is considered a vulnerable population. To further confirm the study's independence from the municipal housing manager and to encourage active consent, all invitation letters distributed through this one site offered a CAD$5 incentive (a grocery store gift card) for contacting the research team, even if they declined participation. If RGI applicants were successfully contacted at Step 11 (passive consent), no incentives were offered.
The offer of the CAD$5 gift card incentive was unique to one of the study sites; the REB at the other site was satisfied that the language and other recruitment protocols minimized the appearance of coercion, and that no more was required to sufficiently distinguish between the study and the housing agency.
Conclusion: Key Success Factors
Key to the success of this study and the recruitment phase in particular were the goodwill of all parties, and the shared values regarding equity for lower income individuals whose voices are often marginalized. The municipal housing managers considered it in their interest to learn about how their service may serve as a health intervention for RGI applicants, and, thus, were willing partners in the negotiation of privacy agreements and recruitment procedures, complex though they may be.
Understanding the perspective and accountability requirements of the different institutions was also key. The municipal housing managers may have been unaware of the research team's obligation to maintain at all costs the anonymity of those who do or do not participate, and similarly, the academic research team learned about privacy laws that usually do not affect them. Being able to see the perspective of one's partners (a function of the goodwill in the relationship) was key, and allowed for each institution to consider creative solutions, while adhering to their internal standards of accountability.
Providing simple, ample opportunities for active consent, through indirect means, was a creative solution to what might otherwise have been an impasse. It was agreed that the time periods between the two invitation letters and the privacy notice were reasonable enough to allow invited applicants to respond, while allowing the research team to carry on with its study.
This project began in 2004 with initial discussions between the principal investigator and the housing service managers in Hamilton (Bob McKnight), Peel (Ivy France) and Halton (Rob Cressman), Ontario. Other municipal partners include Geoff McIlroy (Peel), Gerard Warnaar (Halton), Dave Brodati (Hamilton), Jennie Vengris (Hamilton) and Tammy Morassie (Hamilton). We are grateful for funding support provided by the Canadian Institutes of Health Research, the Canada Mortgage & Housing Corporation (especially Phil Deacon and Ian Melzer) and the leadership and perseverance of dedicated research staff not listed as authors, including Madelaine Cahuas (McMaster), Charoula Tsamis (St Michael's Hospital) and Mariah Fanning (McMaster), and numerous dedicated interviewers.
Exercises and Discussion Questions
- What codified research ethics principles must you abide by
- in your country or region?
- in your professional field?
- at your institution?
- What training methods exist to enable researchers to learn about these principles?
- What privacy laws exist in your country or region that may have an impact upon your current research, or the research you intend to do?
- Are there any tensions between these privacy laws and codified ethics principles? Are there any tensions between these laws and your own personal ethics? What impact would these tensions have upon
- data collection and management?
- dissemination of your research finding?
- If you work with external partners, what are their privacy obligations and/or ethics principles that you must negotiate in order to perform your research?