Care-seeking experiences of unattached patients in the Canadian health care system

Abstract

Objective

To understand how lack of attachment to a regular primary care provider influences patients’ outlooks on primary care, ability to address their health care needs, and confidence in the health care system.

Design

Qualitative descriptive study using semistructured interviews.

Setting

Canadian provinces of Nova Scotia, Ontario, and Quebec.

Participants

Patients aged 18 years or older who were unattached or had become attached within 1 year of being interviewed and who resided in the province in which they were interviewed.

Methods

Forty-one semistructured interviews were conducted, during which participants were asked to describe how they had become unattached, their searches to find new primary care providers, their perceptions of and experiences with the centralized waiting list in their province, their experiences seeking care while unattached, and the impact of being unattached on their health and on their perceptions of the health care system. Interviews were transcribed and analyzed using a thematic approach.

Main findings

Two main themes were identified in interviews with unattached or recently attached patients: unmet needs of unattached patients and the impact of being unattached. Patients’ perceived benefits of attachment included access to care, longitudinal relationships with health care providers, health history familiarity, and follow-up monitoring and care coordination. Being unattached was associated with negative effects on mental health, poor health outcomes, decreased confidence in the health care system, and greater pre-existing health inequities.

Conclusion

Having a regular primary care provider is essential to having access to high-quality care and other health care services. Attachment also promotes health equity and confidence in the public health care system and has broader system-level, social, and policy implications.

Patients who are “unattached” do not have a regular primary care provider (PCP). Although some provinces and territories use the term unattached to describe a patient’s lack of formal enrolment with a specific PCP, we use the term more broadly to describe the 21.8% of the Canadian population aged 12 or older who did not have a regular PCP in 2022 because, from a patient perspective, not having a regular PCP is more important than formal enrolment in shaping care-seeking experiences.^1,2 Unattached patients are more likely to be younger than 35, be male, have lower education levels, have poorer English or French language skills, and report having chronic conditions.^3,4 Unattached patients often seek care at walk-in clinics and at emergency departments (EDs) and are less likely to have access to preventive care.^5,6

Attachment to a PCP facilitates accessible, continuous, comprehensive, and well-coordinated care.³ Many provinces have implemented initiatives to facilitate attachment (eg, centralized waiting lists) or access to care for unattached patients (eg, temporary primary health care clinics, telehealth services, online appointment booking systems, pharmacist-led health care clinics).^7-12 Despite these initiatives, unattached patients continue to report difficulty in navigating the health care system, assessing information sources, accessing their own medical histories, and paying for increased costs of care.¹²

In this article we examine experiences of unattached patients in Nova Scotia, Ontario, and Quebec to understand how not having a regular PCP has influenced their outlooks on primary care, their ability to address their health care needs, and their confidence in the health care system. All 3 provinces have implemented centralized waiting lists to match unattached patients with available PCPs.⁷ Nova Scotia and Quebec have implemented temporary primary health care clinics for unattached patients while Quebec has also introduced an online booking system for appointments available to unattached patients at nearby clinics.⁹ During the COVID-19 pandemic, the provinces implemented telephone advice lines, virtual care services, and designated clinics for patients experiencing flu-like symptoms, including programs specifically for unattached patients.^10,13

METHODS

Using a qualitative descriptive design, we conducted semistructured interviews with unattached or recently attached patients in the provinces of Nova Scotia, Ontario, and Quebec. Qualitative descriptive design is used in studies that focus on patient experiences and prioritizes descriptions based on data rather than theorical interpretation.^14-16 Qualitative descriptive design is consistent with our pragmatic approach and often uses maximum variation sampling, content, or thematic analysis and an inductive analytic approach.

We recruited patients across a range of characteristics,^16,17 including gender, age, community size, and reason for being unattached. In each province we recruited until we had reached saturation (ie, acquisition of sufficient data to allow for rigorous analysis and interpretation)^17-19 based on a debriefing of the research team in each province and a review of field notes during data collection. We included patients aged 18 years or older who were currently unattached or had become attached within 1 year of the interview and who resided in the province in which they were interviewed. We excluded students and temporary foreign workers. To recruit participants we posted study invitations on social media platforms (eg, Facebook, Twitter), with community associations, and, where permitted by the research ethics board, used snowball sampling. Interested participants were asked to contact the research coordinators in their respective provinces. Interviews were conducted in English in Nova Scotia and Ontario and in French in Quebec and were done via Zoom videoconferencing software or by telephone, depending on participant preference. Interviews were conducted between May 2021 and May 2022, and were audiorecorded and transcribed verbatim.

In each interview participants were asked to describe how they had become unattached, their searches to find a new PCP (including use of centralized waiting lists for unattached patients), their experiences seeking care while unattached, and the impact of being unattached on their health and on their perceptions of the health care system. Interview questions (Appendix A, available from CFPlus^*) were tailored to each province to account for differences in health system contexts; for example, we used probes to ask about participants’ use of province-specific services for unattached patients, such as online bookings in Quebec or pharmacist-led clinics in Nova Scotia.

We analyzed transcripts and field notes and identified themes using an inductive thematic analysis approach.^16-19 At least 2 members of the research team independently read 2 to 3 transcripts to identify key words and ideas, which were organized into a preliminary coding scheme.¹⁹ As transcripts were reviewed, additional codes were incorporated into the coding scheme until no additional codes were identified. Research assistants (D.R., J.X., L.R.M., R.B., and V.D.) in each province used the local template to code all transcripts and field notes from the province using NVivo 12 qualitative data analysis software. We then met to compare codes (with illustrative quotations, each labelled with the applicable provincial abbreviation—Nova Scotia [NS], Ontario [ON], or Quebec [QC]—and participant number) and identified equivalent codes in each provincial template. We used descriptive statistics to summarize participant demographic characteristic data.

We obtained approval from research ethics boards in each province and obtained informed consent from participants before scheduling interviews.

RESULTS

We interviewed 41 participants across the 3 provinces. While slightly more than half of the participants (n=24; 58.5%) had been unattached for 2 years or less, almost one-quarter (n=10; 24.4%) had been unattached for 5 or more years (Table 1). We identified 2 main themes in participant interviews: unmet needs of unattached patients and the impact of being unattached (Box 1).

Table 1.

Characteristics of study participants: N=41.

CHARACTERISTIC	n (%)
Gender
• Man	9 (22.0)
• Woman	31 (75.6)
• Nonbinary or gender fluid	1 (2.4)
Age, y*
• 20-39	14 (35.0)
• 40-59	16 (40.0)
• ≥60	10 (25.0)
Years without a primary care provider
• <1	7 (17.1)
• 1-2	17 (41.5)
• 3-4	7 (17.1)
• ≥5†	10 (24.4)
Attachment status when interviewed
• Unattached	22 (53.7)
• Attached	17 (41.5)
• Semi-attached‡	2 (4.9)
Community
• Urban (≥100,000 population)	29 (70.7)
• Small urban (10,000-99,999 population)	7 (17.1)
• Rural (<10,000 population)	5 (12.2)
Province
• Ontario	10 (24.4)
• Nova Scotia	15 (36.6)
• Quebec	16 (39.0)

^*Excludes 1 participant who discussed unattached newborn.

^†Includes participants who did not attempt to obtain a regular primary care provider.

^‡Kept regular primary care provider in community >2 hours away.

Box 1. Summary of major themes and subthemes in participant interviews.

Theme 1: Unmet needs of unattached patients

• Poor access to care

• Lack of longitudinal relationship with primary care provider

• Lack of awareness of medical history

• Lack of care coordination and health system navigation

Theme 2: Impact of being unattached on patients

• Lack of sense of control

• Diminished trust in the health care system

Unmet needs of unattached patients

Access to care. Unattached participants described care as reactive: “I don’t want to wait until there’s a problem. I would rather have a preventive approach” (Participant NS13). Unattached participants emphasized the need to have a PCP to access care: “I need a doctor or access to the health care system” (Participant NS12). Unattached patients who managed their needs with other health care providers said they were unable to access tests without visiting a walk-in clinic or ED:

I have a registered massage therapist and acupuncturist. I have an osteopath. But none of them can write me the chits I need.… How do I get bloodwork? How do I get an x-ray [scan]? There’s no way for me to do that. (Participant NS8)

A participant from Quebec decried the difficulty they had encountered in obtaining a referral to a dermatologist, which required a PCP referral and an in-person visit:

I wonder if I have a melanoma on my back. I don’t have a doctor.… Having access to a dermatologist, it’s like having access to the Pope—impossible, impossible. (Participant QC16)

Participants also needed to have a regular PCP to obtain diagnoses and appropriate treatment plans:

I’ve had a lot of those experiences of a health care provider saying, “Well, it could be this. But I’m not a doctor in this field so I can’t diagnose you.” (Participant NS7)

Accessing care was described as time consuming and visiting walk-in clinics or EDs required long, unavoidable waits: “If you don’t have a doctor … you’re in the waiting room for hours just to get antibiotics for a [urinary tract infection]” (Participant ON2).

Lack of longitudinal relationship with a PCP. Participants without existing health issues wanted to benefit from a longitudinal relationship with a PCP in the event of changes in health status:

Why do I want a regular provider? Because maybe one day I will start to develop problems that need regular seeing, and it’s good to establish a relationship. (Participant NS5)

Participants who planned to become pregnant also wanted to have a regular PCP: “I would like to have kids in the near future, so … I would definitely want to have a doctor that I see regularly” (Participant ON5). Participants also commented that having a longitudinal relationship was essential to patient-centred care and trust, especially when dealing with challenging health issues:

[T]hat personal relationship and that history that you end up [having] with a provider, it makes almost as much of a difference as finding a diagnosis for a difficult health care problem. Because you have trust in somebody that you know is looking out for you. (Participant NS2)

Participants said having a PCP in whom they could confide was essential, especially for patients with mental health care needs who may feel stigmatized when seeking care at walk-in clinics:

I don’t know that I’ve ever felt comfortable going to a walk-in for mental health because I feel like it would get categorized as ... drug-seeking behaviour. (Participant NS7)

Lack of awareness of medical history. Participants wanted to have a single record of their medical and personal histories: “I’m going all over the place to see somebody; nobody’s got my specific file” (Participant ON9). Participants wanted a PCP who had a global understanding of their health (“... that fuller knowledge of me and my situation and my family history” [Participant NS14]) and who could see connections between health issues (“... who can connect current problems to issues that you could have had a few years ago” [Participant QC10]).

Unattached participants were unable to access care and other services because they did not have a PCP willing to vouch for them and to sign administrative forms: “You want to apply for health insurance, and they need a form signed by your regular physician” (Participant ON4). After completing a regimen of specialist care following a workplace accident, another participant struggled to find a walk-in clinic physician willing to sign a prescription because they had no knowledge of the original accident or of the lifelong disability benefit:

[The occupational health agency] gave me the lifetime right to have orthopedic shoes. I just need to ask a physician to sign a prescription … but they are like, “No, I can’t sign that.” (Participant QC13)

Lack of coordination and navigation. Participants saw having a regular PCP as being critical to health care follow-up, routine monitoring, coordination of care, and navigation of the health care system. One participant described these roles as taking responsibility for the overall care plan, including ensuring tasks were completed in a timely manner: “Follow-through … you feel that whoever is taking care of you from a health care standpoint is somebody who is tracking your file” (Participant NS14). Participants described a lack of coordination and navigation when being discharged from specialist programs:

[When I was] released from the program, there was no guidance on what to do next, on where to go or how to get help. They just said, “Well, you need a family doctor.” (Participant NS11)

Participants noted difficulties in trying to implement a new medication plan while relying on walk-in clinic visits: “[Walk-in clinics] don’t really have the capacity to monitor you, which you need when you’re being prescribed a new drug” (Participant NS7). One participant believed her recovery was delayed because she lacked a regular PCP to monitor her condition: “If I’d had a family doctor, they could have changed my medication … back in the spring. I resent the lost time” (Participant NS8).

Participants described difficulties in navigating the health system as unattached patients. A parent of a child with a developmental delay believed their child had missed out on appropriate, government-funded care because they did not have a PCP who could make required referrals:

I think it probably affected my son’s [development] because we didn’t have someone to help us navigate.… No one gave us a referral or anything. (Participant NS11)

Many participants remarked on the additional burden created by having to coordinate one’s own care, which was disproportionately harder for individuals from groups or communities experiencing barriers related to equitable access to care:

It is definitely a level of ... engagement and planning that is not reasonable to expect from most people. It’s not possible for a lot of people [who] don’t have the knowledge or the English skills. (Participant NS8)

Lack of familiarity with the health care system was also identified as a potential barrier:

I work in the health system. I know which door to knock on.… [I]f I put myself in the shoes of someone who is completely ignorant of the health care system, I say, “My God, poor thing,” because for me, it was difficult. (Participant QC8)

Impact of being unattached

Lack of sense of control. Participants discussed the negative impact that not having a regular PCP had on their well-being: “It feels like you have no power or control over the situation at all” (Participant NS10) and “[M]y health was affected. My sense of safety and security was affected” (Participant NS12). Participants with chronic conditions said they felt unsupported and abandoned: “I was left completely by myself” (Participant QC4).

Diminished trust in the health care system. Being unattached “... affects your trust in the system” (Participant NS6). One participant described her sense of frustration with having to fight constantly to have her needs met: “You have to battle, battle, battle, battle. It’s exhausting [to have to push] to get information, to get results, to get tests” (Participant QC16). Participants warned that patients may turn to privately funded care options when no alternatives are available. One participant recounted their dilemma related to choosing private health care to obtain a prescription:

I saw a dermatologist through … an online, private [service]. I felt very guilty about it.… My values were being compromised. But I knew, just hassle-wise, how long it would take to get that care going through the [public] system.… It’s eroding our public healthcare system. (Participant NS8)

Participants noted the growing presence of privately funded health care exacerbates health-related inequities—and indignities—for patients with low incomes:

I don’t have a lot of money.… I have friends who say to me, “We’ll pay for you to see a doctor.” But I cannot ask that. When are you going to say, “I don’t feel well, give me money to see a doctor”? (Participant QC16)

DISCUSSION

Through qualitative interviews with participants in 3 different provincial health systems, we highlight the universal nature of challenges associated with being unattached and the need to address underlying causes. Although provinces manage their health systems independently and initiatives to facilitate care for unattached patients varied by province, participants’ perceptions of challenges and impacts related to being unattached were consistent across the 3 provinces in this study.

Attachment to a regular PCP is associated with better access to health services and continuity of care. Although previous reports have consistently noted poor access to same- or next-day appointments and lengthy waits for appointments with a regular provider in Canada,^20-22 participants noted that having a regular PCP eliminated long, unpredictable waits at walk-in clinics and EDs and facilitated referrals to other health care professionals, test requisitions, prescriptions for medications, and access to preventive care. Additionally, although only a few participants (ie, those working in the health system) explicitly used the term continuity, almost all unattached patients in the study identified the traits of relational, informational, and managerial continuity that stem from having a regular PCP.^23-25 Our findings also highlight the important role that a regular PCP plays in affirming patients’ eligibility for access to government-funded support and private insurance benefits by vouching for patient medical histories and underlying health conditions.

Access to a regular PCP also has broader social and policy implications. Having a regular PCP is associated with greater patient reassurance and confidence in the health care system.¹² Conversely, being unattached erodes patient confidence, notably in universal public health insurance. Unattached patients in our study reported paying privately for medical services to enhance access to care despite having personal misgivings. A 2023 opinion poll in Canada reported that 28% of respondents support increased privatization of the health care system and 33% are curious about it.²⁶ In addition, the number of privately funded primary care clinics that charge membership or other fees for individual services has been growing in Canada^27,28; roughly one-third of these clinics are located in Quebec,²⁷ which historically has had a relatively high proportion of unattached patients compared with other provinces (25.6% of the population in 1994 to 1995).^4,29,30

Unattached patients with private health insurance and higher incomes are better able to access health care professionals (whose services may not be covered by public health insurance programs) or privately funded PCPs. Consistent with the literature,^31,32 participants also noted that challenges of navigating the health care system without a regular PCP are magnified for patients who have low incomes, have chronic conditions, are immigrants who are unfamiliar with the health care system, or do not speak the majority language. These findings suggest the need to prioritize addressing attachment for populations who lack equitable access to care. Currently, 6 provincial centralized waiting lists for unattached patients in Canada prioritize patients based on medical needs, but none take social care needs into account.^7,33

Limitations

We interviewed participants in 3 Canadian provinces during the COVID-19 pandemic. Participants’ experiences may not reflect experiences of unattached patients in other provinces due to differences in health systems, population structure and characteristics, and local initiatives aimed at facilitating access to primary care. Moreover, given when these interviews were conducted (May 2021 to May 2022), findings may not represent experiences of unattached patients when there are no pandemic-related public health restrictions. Unattached patients are more likely to identify as men and some do not want a regular PCP.^3,4 Three-quarters of our participants were women and all reported wanting a regular PCP; hence, our findings may not reflect the views of all unattached patients. Recent immigrants to Canada who are not fluent in English or French may have been overlooked; recent immigrants may also experience additional barriers to care. Recall and social desirability bias may have influenced participants’ answers (eg, if they felt they would be judged for having used privately paid services).

Conclusion

Unattached patients sought episodic care at walk-in clinics and EDs, as well as from specialist physicians, private pay providers, and other health care professionals. Unattached patients had trouble obtaining referrals to specialists, requisitions for diagnostic testing, prescriptions for drugs, and approvals for access to public support programs. Unattached patients described a lack of continuous, timely, and preventive care. They wanted an ongoing relationship with a PCP who understood their needs and values, knew their medical history, and coordinated their care. Having a regular PCP instilled a sense of reassurance; without a regular PCP, unattached patients felt unsupported in managing their care. Attachment to a regular PCP has individual health implications as well as broader social and policy implications. Being unattached has the potential to exacerbate underlying health inequities for vulnerable patients and to erode confidence in universal public health systems. Having a regular PCP is essential to accessing high-quality primary care and other health care services, and it promotes health equity and confidence in a publicly funded health care system.