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Terry

Seeking Integrated, Safe & Accessible Care

Terry

“I know it’s a lot. I do… But if I could ask for anything… it’d be to just make this a bit easier on me.”
Age 66
Location Treaty 7Treaty 7 territory is a region in southern Alberta. It stretches from the Red Deer River south to the United States border, and from the Rocky Mountains east to the Alberta-Saskatchewan border., rural community
Family/supports Single, caregiver for elderly mother who requires home care services
Financial status Retired, recently eligible for seniors benefit. Struggles to make ends meet with added transportation costs for medical care.
Provider visits Frequent — one or more times per month
Patient Experience Survey

Terry’s Patient Experience

PoorFairGoodVery GoodExcellent
Time Spent
Poor
Listening
Poor
Clear Explanations
Poor
Involvement in Decisions
Poor
Knowledge of Medical History
Poor
Respect
Poor
Availability
Poor

View primary care patient experience ratings across Alberta →

Invitation to Pause: Framing Identity and Cultural Context

Before engaging with this persona, we invite you to pause and consider the context that shapes this experience.

Read before continuing ›

Invitation to Pause: Framing Identity and Cultural Context

This persona does not represent a single individual, community, or Nation. It was developed through a careful, distinctions-aware process rooted in qualitative interviews with Indigenous participants from diverse backgrounds. It reflects layered and at times divergent experiences — some rooted in First Nations or Métis identities, some shaped by mixed ancestry or disrupted lineage, and all emerging in the context of contemporary colonial health systems.

In this space, we offer a pause to hold distinctions with care, recognizing that any attempt to create a singular Indigenous persona risks essentializing complex and distinct experiences. At the same time, omitting Indigenous identity would risk invisibilizing the disproportionate harms and structural inequities Indigenous peoples continue to experience in health care.

The persona was informed by people who navigate complex relationships to ancestry, language, territory, and kinship. This persona was crafted through a commitment to understand how systemic inequities show up differently across and within Indigenous identities, while also making visible the dynamics that shape care and communication experiences for those who shared their stories with us. Before entering this persona story, we invite you to consider the following contextual frames that have shaped this offering:

  • Identity is not static. The persona reflects the ways Indigenous identity can show up in primary care settings — as both a source of strength and vulnerability. Decisions around how and when to disclose identity are shaped by safety, mistrust, cultural disconnection, and systemic racism.
  • Health care is shaped by histories and identities. Residential schools, medical experimentation, jurisdictional gaps, and ongoing discrimination differently shape how Indigenous peoples may experience primary care. This also influences how patients understand, recall, and share their medical and family history — what is known, what feels safe and relevant to disclose, and how that knowledge is contextualized within the present.
  • Distinctions matter. First Nations, Métis, and Inuit peoples each have distinct governance, relationships to land, histories with colonial systems, and experiences of health care. These distinctions are foundational to how health inequities are produced and experienced. At the same time, there is great diversity within and across Nations and communities — in language, protocol, identity, and relationship to care that are interpreted and experienced in distinct ways.
  • Western health systems struggle to hold complexity of Indigenous experiences and identities. Many Indigenous patients — including those with mixed ancestry, disrupted lineage, or less visible cultural markers — often face challenges in being recognized or understood by the system. These challenges are compounded by experiences of racism and systemic discrimination, the jurisdictional complexities of health care, and the lack of time and relational space to share the broader context of health, story, and history within the primary care visit.

This persona is offered not as a resolution, but as an invitation — to reflect, to sit with complexity, and to engage with care. It is not offered as a final or comprehensive representation, but as a composite shaped by many stories, shared generously and in trust. These stories ask us to acknowledge that care must be tailored, relational, and responsive to the specificity of each person's history, lineage, and context.

We ask you to meet this persona not as a fixed identity, but as a relational offering. It is one way to honor the stories shared with us, while recognizing that much remains beyond what can be captured here.

This persona reflects experiences of patients navigating rural and regional health systems while living with complex, chronic conditions. It also highlights how identity, family history, and lived experience shape care access and communication. Terry does not represent a single individual, community, or Nation. Instead, it draws on patterns and insights from patient interviews, grounded primarily in one experience and supported by others.

Before engaging, consider where identity, experience, and care meet. Terry's story reflects a complex relationship to identity, ancestry, and history — what is known, uncertain, or not always safe to share. These dynamics are shaped by colonial systems, systemic inequities, and differential treatment in healthcare. Identity may be visible or misunderstood; at other times, it is shared selectively based on safety and trust. These decisions are shaped by prior experience and are central to care.

Terry's experience reflects what can happen when care becomes fragmented, inconsistent, or difficult to access — particularly in rural contexts where geography, weather, and limited provider availability shape every aspect of care. Travel is not simply an inconvenience; it is a financial, physical, and emotional burden that must be navigated repeatedly to access testing, follow-up, and specialist care.

Without stable primary care, Terry coordinates services across providers, locations, and systems — managing appointments, tracking results, advocating for follow-up, and ensuring information is shared. This labour is essential to prevent gaps, delays, or harm.

Past experiences of being rushed, dismissed, or treated harshly shape how patients enter future encounters. Appointments are not neutral — they require preparation, vigilance, and emotional labour. Patients may carefully consider what to share and whether it will be received with respect.

This persona supports reflection on:

  • How geography, cost, and weather shape access to care.
  • The extent of patient-led coordination when continuity is lacking.
  • How past harms influence trust, communication, and disclosure within clinical encounters.
  • What relational and structural conditions support safe, engaged care.

This persona highlights several important tensions:

  • Access and effort: Getting to care requires planning, travel, and financial cost. What appears as a missed or delayed appointment may reflect competing responsibilities, including caregiving and resource constraints.
  • Preparation as necessity: Lists, tracking, and planning are not preferences — they are strategies to manage risk in a system where information does not always flow seamlessly, and follow-up is not guaranteed.
  • Trust as conditional: Trust is not assumed. It is built over time, often after harm, dismissal, or inconsistency. Patients may remain cautious even when care improves.
  • Identity and safety: Decisions about what to share — about family history, identity, or lived experience — are shaped by whether the space feels safe, respectful, and worth explaining.
  • Self-navigation as survival: Coordinating care across providers is often patient-led. While moments of collaboration are impactful, they are frequently the result of patient efforts rather than system design.

Terry's story reflects the complexity of navigating care while holding multiple, sometimes uncertain, relationships to identity, family history, and community. These dynamics are shaped by histories of colonialism, systemic racism, and inequitable access, influencing safety, recognition, and trust.

This persona does not represent any one Indigenous experience. It invites reflection on how identity — visible, hidden, or evolving — interacts with care in ways that are often unspoken but deeply felt. This story represents one constellation of experiences navigating care across distance, complexity, and constraint.

I did have a family doc, but I kinda stopped going unless I really had to — between taking care of mom and never knowing what I was gonna get from him, it just didn't feel worth it. It was always rushed, and he'd yell, boy did he yell. I was just about out of my mind. A lot of things got missed and he'd change stuff on me - like what about the plan we had? Is anyone really keeping track? I actually found out I had breast cancer from the report online, not from him - like holy crow! I probably stayed longer than I should've but there's not a lot of options out here...they always leave. I went without a regular doc for a while after that, but I've got this nurse practitioner now, and she's good at keeping things connected for me.

Over the years, I've picked up a few things — breast cancer, diabetes, osteoporosis — and some long-term complications from treatment that didn't go as planned. I'm still managing nerve damage from the radiation. So there's a lot of hands in my file, you know — lots of appointments, specialists, tests, medications, and follow-ups to keep track of, and then other things that come up — like I got bitten by a dog a little while ago too. Some people have hobbies — mine seems to be appointments.

For a long time, things have been pretty shaky. I've had care that felt rough — rushed, dismissive, even aggressive — and after enough of that you start going in with your guard up. Sometimes I'm tired before the appointment even starts – thinking about what to say, what not to say, and whether they're actually gonna hear me. When it comes to who I am - my identity, my family, and all the history you know – I don't fully know all that myself. Makes you wonder if you should tell them because of the genetic component in there, but there's also no time or safety. We get treated differently. I see it all the time. It's gotten better with the team I have now. I feel more looked after and believed, like someone's actually paying attention. I still wouldn't call it easy though. So yeah, there is more trust now — but I had to build it carefully. It's not something I just hand over anymore.

Listen to Terry describe how they feel about their care.

Hear more of Terry’s Story
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Audio placeholder — a recorded narration of Terry’s story for accessibility and engagement purposes.

Getting to an appointment is half the battle, honestly. There's a lot of driving to different towns or into the city — sometimes even in the same day. It gets kinda crazy. And in the winter, it's the worst. Not to mention expensive — gas, insurance, keeping the car running... it all adds up. If I didn't have a vehicle, I wouldn't be going anywhere. I call it my "medical tourism." I do a lot of the work ahead of time too — keeping track of my tests, medications, appointments, making sure I've got my questions ready — because if I don't, things get missed. You don't always get much time either, so you gotta come in prepared and try to guide things a bit. And then there's my mom — she's in her 90s, hey — so I'm helping her with her appointments, groceries, checking in. Sometimes my stuff has to wait, even if they're not too happy about that. It helps I've got patience and a good sense of humour, you know.

Listen to Terry describe how they prepare for appointments.

Hear more of Terry’s Story
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Audio placeholder — a recorded narration of Terry’s story for accessibility and engagement purposes.

  1. Help me plan this in a way that actually works for my life. Try to get tests done before winter, and don't send me all over the place in one day. If something can be done closer to home or without me having to come in, that makes a big difference.
  2. Keep me in the loop — just let me know what's going on. Be clear about what the next step is and call me with results when you have them.
  3. Take our time and work through this with me. I'm not expecting everything to be fixed in one visit. I just need you to listen and help me understand what we're doing and why.
  4. See the whole picture and make it feel safe to share. My story's not always straightforward — sometimes I don't know how much to say, or if there's time for it.

Listen to Terry describe what they need from their healthcare team.

Hear more of Terry’s Story
0:00 0:00

Audio placeholder — a recorded narration of Terry’s story for accessibility and engagement purposes.

These days, I've got a bit of a mix of people when it comes to care — not just one doctor. My surgeon told me straight up, "Find your own people, get the right people," and he helped me get connected to a specialist a little closer to home who actually took the time and picked things up right away — ordered all the tests, explained everything, didn't rush me. And my nurse practitioner keeps things moving, pulls in doctors when she needs to — she's really good. I'm not insecure about not having a regular doctor anymore — I think I get better service. The pharmacist's been a big help too — making sure I can actually afford what I need and even delivering it on weekends. So yeah, there's a few of them now... but I'm still the one keeping track of it all.

These questions are intended to encourage individual reflection on Terry’s experience and identify opportunities to improve the quality of care for people with similar experiences.

  • What part of Terry’s story stayed with you the most?
  • Terry says, ‘I’m still the one keeping track of it all.’ What do you think would help Terry feel safe trusting others to share this responsibility?
  • How might the historical and ongoing experiences of many First Nations, Métis, and Inuit peoples influence trust in healthcare and interactions within the health system?
  • What strengths does Terry demonstrate in preparing for appointments, advocating for their health, and coordinating their circle of care?
  • What aspects of Terry’s life, identity, health, or responsibilities might not be immediately visible during an appointment?
  • What additional information or questions would help you better understand Terry’s needs, concerns, or experiences?

The quality dimensions provide a common language for understanding quality as it should be experienced by people.

The questions that follow invite you to consider Terry’s story through the interconnected dimensions of People-centred, Safe, and Integrated, while recognizing that other dimensions may also be relevant.

People-centred

The wholistic preferences, needs, and strengths of people and communities matter.

Terry is living with multiple chronic health conditions while balancing caregiving responsibilities and navigating care across providers, communities, and healthcare settings. They carefully prepare for appointments, track tests and medications, advocate for follow-up, and work to ensure nothing gets missed. By the time they arrive, they have already invested significant time and effort into preparing for the visit. Terry hopes to work with their healthcare team to make decisions that reflect the whole picture of their life, recognizing that care needs to fit alongside their responsibilities, priorities, and goals – not just the health conditions they are managing.

What aspects of Terry’s identity, responsibilities, and evolving health needs must be understood to support care that reflects what matters most to Terry?

Safe

Trust and feelings of security are fostered, and all forms of preventable harm are avoided.

Terry describes entering appointments with caution after experiences of being rushed, dismissed, and treated differently. Decisions about what to share—including family history, identity, symptoms, and concerns—are shaped by whether the interaction feels respectful, safe, and worth the vulnerability it requires. Although Terry has developed trusting relationships with members of their current care team, trust remains something that is built over time through listening, follow-through, and consistent communication. Terry hopes healthcare interactions create enough time and space to share what matters without feeling rushed or like they are asking for too much.

How do Terry’s experiences influence trust, feelings of safety, and decisions about what to share during healthcare interactions?

Integrated

People, teams, sectors, organizations, and communities are interconnected.

Terry’s healthcare experience spans multiple providers, communities, and healthcare settings. Although each provider contributes an important piece of Terry’s care, Terry is often left connecting those pieces — tracking appointments, following up on results, sharing information between providers, and reconciling recommendations. Geography, travel, weather, caregiving responsibilities, and the financial, time, and emotional demands of multiple appointments, medications, and tests add further complexity. Terry needs care that recognizes these cumulative burdens and feels connected and coordinated, rather than care that relies on an individual to hold everything together alone.

What opportunities exist to reduce the coordination work Terry carries and create a more connected experience of care?

Are there other quality dimensions that are also relevant to Terry’s experience?

Looking for a broader perspective?

The Alberta Quality Dimensions for Health are one part of the Framework for an Integrated People-centred Health System. The Framework also includes enablers, which create the conditions that support quality care, and shared responsibilities, which describe the actions everyone can take to contribute to high-quality, integrated people-centred care.

Explore the Framework to learn how the dimensions, enablers, and shared responsibilities work together to support high-quality, integrated people-centred care.

These questions invite you to consider how the insights gained through reflection and exploration could inform improvements within your own practice, team, organization, community, or the broader health system.

  • What could Terry’s care team have done differently for Terry to feel heard, supported, and confident in the coordination their care?
  • What could you do differently to better understand someone’s priorities, responsibilities, and the challenges they are navigating before making decisions about their care?
  • How could care be better coordinated so people like Terry are not left to carry the responsibility of connecting information, appointments, and recommendations?
  • What knowledge, skills, resources, or supports might help you, your team, or your organization provide more responsive, culturally safe, and coordinated care for people with experiences like Terry’s?
  • What opportunities exist within your team, organization, or community to reduce the work people like Terry do to connect information, providers, appointments, and recommendations?

These resources build on the reflections and insights gained through this persona and support team discussion, quality improvement, and a deeper understanding of this topic.

Facilitate team learning: Continue the conversation with your team using the Persona Facilitation Guide: Open the Terry chapter (future link page/pdf), which includes facilitation tips, discussion activities, and planning tools.

Support improvement: Learn how you can support providers using the personas for quality improvement with the Physician Practice Improvement Program (PPIP) Fact Sheet: Personas (future link). Also, check out the following Health Quality Alberta resources:

Expand your knowledge: Explore additional clinical, community, and educational resources related to the topics explored through this persona.

These questions are intended to encourage reflection on Terry’s experience and help make connections to your own experiences or those of someone you care about.

  • What part of Terry’s story stayed with you the most?
  • Although many people are involved in Terry’s care, Terry says, ‘I’m still the one keeping track of it all.’ What do you think Terry hopes for from the healthcare team?
  • What strengths does Terry draw on while navigating complex health needs, caregiving responsibilities, and the challenges of coordinating their own care?
  • What do you think would help Terry build trust with their healthcare team, so they feel comfortable and supported to share their whole story?
  • Does any part of Terry’s experience resonate with your own healthcare experiences or the experiences of someone you care about?

These resources build on the reflections and insights gained through this persona and provide additional information and resources related to this topic.

Find support:

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