Building Bridges in Palliative Care: Perspectives on a Community–Health Information Exchange

Abstract

Introduction:

Individuals experiencing homelessness or unstable housing conditions face many challenges in accessing palliative and end-of-life care. Although supports may exist in hospitals and community settings, service providers face communication barriers with different agencies and may struggle to connect clients with appropriate community and hospital resources. Community-health information exchanges (CHIEs) are one possible vehicle to enhance communication and understanding between service providers and recipients. They hold potential to support more personalized palliative and end-of-life care for individuals whose needs span multiple systems.

Method:

Participants were recruited through snowball sampling from a mobile palliative care team in Calgary, Alberta, Canada. In total, 11 service providers and 7 service recipients were interviewed. A vignette was created based on service recipient perspectives, and a thematic analysis was conducted to explore service providers’ perspectives of an upcoming CHIE in Calgary. Following this, a hypothetical vignette, informed by service recipient and provider perspectives, envisioned how a CHIE could function in practice.

Results:

The fictional vignette, constructed from service recipient interviews, highlighted barriers to palliative care access such as silos in service provision and experiences of being labeled in the system. The thematic analysis showed three major themes: (1) an information exchange can have potential benefits, (2) organizational readiness and system design will shape the success of information exchange, and (3) equity, consent, and trust must remain central to implementation.

Conclusion:

Participants indicated that a CHIE, if guided by principles of consent and equity, could meaningfully impact palliative care access and continuity for structurally vulnerable populations. However, they also cautioned that without careful attention to privacy, power dynamics, and the risk of reducing individuals to labels, CHIEs could inadvertently reinforce inequities.

Background

Palliative and end-of-life care (PEOLC) aims to improve the quality of life for individuals and their families with life-limiting illnesses. ¹ However, individuals experiencing homelessness face many barriers to accessing PEOLC tailored to their individual needs. ² Some contributing factors to adverse health outcomes are a lack of appropriate services for individuals with substance use, ³ stigma, and systemic barriers such as disparities in transportation.^4,5 PEOLC may also be deprioritized when individuals are more concerned with surviving and meeting basic needs; this may lead to an underutilization of PEOLC. ⁶ Barriers to PEOLC also exist broadly, as homelessness strategies in Canada often assume a “one-size-fits-all” approach to PEOLC; for example, individuals in remote areas, racial minorities, gender- and sexually diverse individuals, and those with greater health care needs may face limited access to appropriate services.^7–9 As such, many individuals receive substandard care or feel excluded from Canada’s health and social services systems. ¹⁰

The health equity framework (HEF) provides a structure for public health initiatives to promote equity. ¹¹ The HEF is a research tool that highlights that there are many interacting influences, not just on an individual level, but on a population level, that can shape both risks and protective factors to health equity in meaningful ways.^11,12 Achieving health equity requires the removal of health disparities and ensuring individuals possess the agency and access to the resources and opportunities they need to thrive.^11,12 The HEF highlights multiple spheres of influence that shape equity: Systems of Power, Relationships and Networks, Individual Factors, and Physiological Pathways. ¹¹ Power differentials in policies and institutional practices can determine whether individuals can equitably access resources and services; relationships may support or hinder health through social and professional connections; individual attitudes and skills interact with these broader influences to affect health; biological and psychological factors shape, and are shaped by, social determinants of health.

More recently, there have been efforts to provide more integrated PEOLC through health care navigation, interdisciplinary collaborations, and community-based teams.^3,13–15 Here, we define a service provider (SP) as an individual whose work addresses the psychological, social, and/or physical health needs of an individual. A service recipient (SR) then accesses support from an SP. Despite calls for accessible support, systemic barriers to interdisciplinary and multidisciplinary collaboration across health care sectors persist. Scholars have attributed this fragmentation to funding stream competition, incentivized siloed service delivery, SP shortages, and different philosophies of care.^16,17

Community-health information exchanges (CHIEs) are one proposed solution to the siloed nature of PEOLC provision across medical and social services systems. Rather than relying on a system where individual providers independently reach out to each other for client information, CHIEs are coordinated, community-led, electronic record systems that securely share client information across multiple service organizations. ¹⁸ With an individual’s consent, these networks allow SPs to document the services an individual is accessing and share relevant health and psychosocial information with reduced delays in communication across health and social services. Often, a CHIE operates using a tiered system where participation is regulated through role-based permissions; organizations only access information necessary for their role and when they are involved in providing or coordinating services for their clients. ¹⁸ In a CHIE, participating organizations can choose their level of involvement. ¹⁸ Some organizations have full access to client information and referral authority, while others liaise with partners or function solely as referral points. CHIEs also include a client portal where individuals can view their records, manage consent, and directly engage with their own information. ¹⁸ Although the concept of CHIEs is still in its infancy, four important factors to successful CHIEs are shared data, financing, leadership, and vision. ¹⁷ With these values in mind, CHIEs could reduce the duplication of services, place less burden on individuals to re-explain their circumstances, and streamline communication between SPs.

Although CHIEs can streamline care, they may inadvertently reduce complex experiences to fixed categories. At the crux of this issue is balancing standardization and customization. ¹⁹ Health care systems, sometimes driven by managerial strategies, prioritize efficiency and often overlook the personalized role health care plays in shaping SR experiences.^19–21 For instance, labeling an SR based on mental health crises and noncompliance concerns in a CHIE system could reinforce stigma across many sectors, following the SR through their care journey. Integrating SR perspectives into CHIE design is important yet often overlooked. Few studies examine SR perspectives, though emotions related to one’s health condition and the purpose for which information is requested could influence SR willingness to disclose personal health information. ²² For example, individuals with severe diagnoses, such as cancer, may share more health information with their SPs because they feel anxious about securing the care they need and perceive disclosure as necessary to access services. ²² CHIEs must also fit into SPs’ busy workflows and comply with strong patient consent regulations to be successful. ²³ Coordinated care through such systems can reduce hospital readmissions and prevent patients from falling through the cracks,^24,25 but few studies include perspectives of underserved populations, such as those experiencing homelessness. Studies that concern the use of digital health services for individuals in precarious housing conditions often highlight the barriers individuals face. Vulnerable populations often face insufficient digital literacy skills, mistrust of online platforms, and/or lack of access to devices and connectivity, which can limit the effectiveness of digital tools.^26,27 At the same time, mobile phones can reinforce social connections and support tasks such as appointment booking. ²⁷

Recent work, such as the Digital Health Care Equity Framework, asks digital health systems designers to consider three main areas: patient and community characteristics, health system characteristics, and technology characteristics. ²⁸ The purpose of this framework is to guide community members in evaluating whether digital health tools reduce, rather than worsen, health care inequities. ²⁸ The framework also shares that nondigital options may still be necessary to ensure access for all populations. ²⁸ Therefore, the design of CHIEs must align with equity goals by capturing the complexity of individuals’ needs and circumstances.

Different communities have implemented CHIEs with varying success. One study evaluating a CHIE found that although it facilitated clearer documentation for SPs, it did not provide a holistic picture of the SR. ²⁹ Another study in Northern California cautioned that the effectiveness of a CHIE depends on full integration across providers and sites. ³⁰ Other SPs in Dallas County discussed the feasibility of CHIEs and had concerns around technology infrastructure; they shared that smaller organizations may have limited technology access, and they worried about the risk of information security breaches. ³¹ Conversely, 211 San Diego, a statewide community resource navigation service, found success in their endeavors by recruiting a wide range of community and health agencies and designed a toolkit based on their learnings to support other communities in launching CHIEs.^18,31

In 2025, Distress Centre Calgary and partner organizations announced plans to launch a CHIE that serves the Calgary, Alberta, Canada area. ³² Alberta is in a unique position due to the siloed nature of their health services agencies and recent legislation that has created barriers to accessing care. As of September 2024, the province restructured its health system from a single entity into four agencies (Acute Care, Continuing Care, Primary Care, and Mental Health/Addiction). ³³ Recent decisions, such as the Alberta government’s use of the notwithstanding clause to limit access to gender-affirming health care, along with increased inequities in COVID-19 vaccine access due to cost and distribution barriers, may contribute to heightened stigma and ongoing structural distrust in health care within Alberta.^34–36 Although a central medical record system exists across the province, individuals report difficulties navigating it; furthermore, this record system is primarily accessible to medical SPs and their clients because it is largely designed for documenting clinical details (e.g., medical test results). ³⁷ Consequently, this system can exclude some community-based and nonclinical SPs. Similarly, there is a client record system that tracks and refers services that are accessed by individuals experiencing homelessness in Calgary; however, not all community agencies have access to this information, and this record system may exclude individuals who are housed but at risk of losing their housing. ³⁸ As such, the integration of a CHIE could be one tool that could enable SR information to move more fluidly between medical and social services sectors.

Objective

This study examines perceived benefits and drawbacks of a CHIE in PEOLC for individuals experiencing precarious housing in Calgary, Canada. Given plans to launch a local CHIE, it is timely to consider SR and SP perspectives in its design.

Design

The Conjoint Health Ethics Research Board approved this study in March 2023 (REB-1023). Informed consent procedures and participant confidentiality were adhered to. Semi-structured interviews with SRs and SPs were conducted via phone, Zoom, or in person. Interviews lasted between 60 and 102 minutes and were audio-recorded, transcribed verbatim, and anonymized.

Setting/subjects

Participants were recruited from a community-based palliative care team in Calgary, Canada, that has provided not-for-profit PEOLC since 2016 to individuals with life-limiting illnesses who experience/are at risk of homelessness. The team comprises a rotating roster of palliative care physicians, a part-time clinical nurse specialist, a nurse coordinator, a health navigator, and a team lead. The team bridges gaps between health and social services by connecting SRs to community resources, mainstream health care, appropriate PEOLC supports, and advocacy. They operate on weekdays during business hours and serve approximately 15–20 clients. A referral from an allied health professional is required to access these services.

Between March 2023 and January 2024, 11 SPs and seven SRs were recruited using snowball sampling. Participants were eligible if they were either (1) SPs working for the community-based palliative care team, collaborating hospitals, and/or nonprofit organizations in Calgary or (2) SRs who were clients of the community-based palliative care team. The only exclusion criteria required that participants had the capacity to (1) provide informed consent to partake in the interview, and (2) communicate in English. The palliative care team informed SRs of the program and SPs in their network about the study via word-of-mouth and online posters that were shared through organizational email lists. All SRs were connected to shelters, libraries, or individuals within their community that provided them access to a phone or computer; those who expressed interest were contacted by researchers for one-on-one interviews in-person, via phone, or using Zoom, depending on participant preference and technology access. In-person interviews were held in locations that were accessible to participants, including library meeting rooms, shelter conference rooms, or, when preferred, private spaces within participant homes. Interview locations were coordinated with participants via phone or email. To maintain confidentiality in this tight-knit community, we cannot elaborate on participant characteristics; however, five SPs worked primarily within a social services profession, and six worked within a medical profession. Individuals who worked within the social services profession included social workers, community resource navigators, and other frontline staff who worked at nonprofit agencies. Medical professionals included palliative care physicians, nurses, and hospital administration. The demographic makeup of the SRs is similar to that in a previous study conducted with the same program, where participants were primarily male, often diagnosed with cancer, and were in their late 50s. ¹⁴ All SRs received a total of $25 CAD for their participation. No participants withdrew from the study.

Procedure

A semi-structured interview guide was developed by all members of the research team that outlined questions related to health equity, system navigation, and opinions on CHIEs (Appendix A). Two members of the research team (C.P. and L.W.S.C.) conducted interviews with participants. Interviews were audio-recorded, and field notes were written after each interview. Transcripts were transcribed verbatim and de-identified immediately. Repeat interviews were not conducted, and transcripts were not returned to participants. Data were stored in password-protected files on a university server.

Researcher reflexivity

The research involved three women: L.W.S.C. (BSc, honours; certified community resource specialist), C.P. (PhD, postdoctoral associate), and K.M. (PhD, principal investigator). L.W.S.C. and C.P. both have personal and professional experiences within the palliative care and social services community in Calgary. L.W.S.C. previously worked for an organization that worked to establish the Calgary CHIE but did not disclose this to participants to avoid pressure to offer favorable views of the project. C.P. was not involved with any organizational work that contributed to the development of the Calgary CHIE but was affiliated with provincial health services at the time. L.W.S.C. and C.P. discussed their perspectives and potential biases regarding the CHIE throughout the research process. K.M. is a senior researcher with longstanding relationships in Calgary’s health and social service sectors. K.M. and C.P. were familiar with the palliative care program and knew of some participants but did not hold supervisory or decision-making roles over them. To reduce any perceived relational dynamics, interviews were carried out by team members who had no direct prior relationship with participants. Reflexive discussions were held throughout the project to consider how positionality, assumptions, and insider knowledge might shape data collection and interpretation. This approach acknowledged and made transparent the influence of researcher perspectives, while ensuring participant perspectives were also prominent in the findings.

Measurements

Data analysis followed an inductive approach and social constructionist epistemology to thematic analysis, using Braun and Clarke’s six phases of reflexive thematic analysis.^39,40 Transcripts were coded inductively by L.W.S.C. and C.P. with NVivo 14 (QSR International Pty Ltd, 2018), allowing themes to be grounded in the data rather than imposing a priori categories or frameworks. This allowed us to better center participants’ unique perspectives regarding CHIE systems within the PEOLC context. Transcripts were first coded line-by-line, using small meaning units that closely reflected participants’ language and perspectives. Codes were progressively refined, compared, and clustered into larger conceptual categories. We approached the data from a social constructionist perspective, which assumes that knowledge and meaning are co-constructed through social interactions, rather than existing as objective truths.^41,42 Thus, we interpreted participants’ accounts as situated understandings of the system, rather than universal experiences. C.P. and L.W.S.C. held biweekly peer debriefing ⁴³ meetings to compare codes, discuss interpretations of the data, and address differences in perspectives. K.M. provided input and oversight throughout this process. Data saturation was ascertained when no additional data contributed to new emergent themes; recruitment and interviews ended once data saturation was reached. ⁴⁴ Themes were iteratively developed to reflect patterns across SP perspectives on potential benefits, challenges, and CHIE design considerations. Preliminary themes were presented to the community to check for credibility. As a result, themes were constructed such that the analytic process was informed by both the researchers’ interpretation and the lived expertise of SPs. Based on the themes that were developed, we chose to interpret the findings through the lens of the HEF, given the data’s alignment with the framework’s intersecting spheres of influence.

Results

As only two SRs provided brief comments directly related to CHIEs, themes were developed using SP data only. We chose to present the SR interview data in a fictional vignette based on SR interview responses, as SRs mainly discussed systemic difficulties and their resulting challenges in system navigation. This vignette pulls from the perspectives seven SRs shared in their current experiences accessing information and resources. Following this, we present the results of a thematic analysis based on SP interviews. Lastly, we present a hypothetical vignette that integrates the perspectives of SPs and SRs.

Vignette: the problem of system navigation

Dennis, aged 53, has lung cancer and chronic obstructive pulmonary disease. Often, Dennis must repeat his medical history and personal circumstances to hospital and social service staff, leading to delays in care, missed appointments, and/or duplicated efforts by providers. Unable to work, Dennis cannot access unemployment benefits. His doctor will not sign sickness benefit forms until chemotherapy is complete, a decision he only understood after a community social worker explained it to him. He explored other forms of financial aid, but this was confusing; he tried to get in touch with an old support worker but was unable to find her as she no longer works at the same agency. Shelters have turned him away, citing safety issues with his oxygen tank, and transportation challenges limit his ability to attend appointments. With no insurance, he frequently visits the emergency room for medications, resulting in long waits. His experiences are also shaped by how he is categorized in the system. In one setting, he is recorded as “noncompliant,” while elsewhere he is coded as someone with “housing instability” and as a “frequent emergency department user.” These labels influence the supports that Dennis is told he qualifies for and which services see him as too “high risk” or too “resource intensive.” Two weeks ago, he ended up in the hospital, and now he is worried about being discharged as he does not remember how to get in touch with his community social worker; hospital social workers suggested resources that have long waiting lists and have turned him away in the past. In the current system, he must contact multiple individuals to access the information and support he needs.

This vignette highlights the challenges the seven SRs in our study experienced when accessing necessary information and resources. The following sections explore how a CHIE may help or hinder individuals in their need for palliative care and community supports.

Thematic analysis

Based on interviews with participants, three key themes were created: (1) information exchange can have potential benefits, (2) organizational readiness and system design will shape the success of information exchange, and (3) equity, consent, and trust must remain central to implementation. These themes are also presented visually (Table 1).

Table 1.

Themes and Subthemes

Themes	Subthemes	Quotes
1. Information exchange can have potential benefits	1.1. There is potential to close gaps in service navigation	“So, if there were an ability for people to share some of that [information] and you could say, ‘Oh, here’s Frank. Here’s his phone number. These are the days of the week he works. This is his role’… But at the moment, you’re just playing a phone number game, ‘Is that Frank? Do you know George?’ And you feel each other out”.-Service provider #7 a
	1.2. There are benefits for micro-and macro-level advocacy	“If we could have a systematic red flag during the regular new patient assessment to say that this [person] is vulnerably housed (or poorly) and in challenging social circumstances…chronic substance use, or poverty, or chronic psych, then maybe that’ll put a red flag to send that information exchange your way faster or the information exchange to all the health care workers working with you.”—Service provider #10
2. Organizational readiness and system design will shape success	2.1. There are organizational and capacity differences across agencies	“But I do see the risks that could potentially be there. And then obviously, if you weren’t trained in it, how often would training happen to be part of this program so that you would have access to [it]? It could create a barrier for staff that doesn’t have access to a program like that.”—Service provider #3
	2.2. Not another system: technology burnout and uptake concerns	“I think it can’t be too unwieldy. In a busy medical system, if there’s too many places to look for information, even [medical record system] can have its own issues looking in multiple places for information. I think it sounds great and sounds great to have multiple areas, but it’s not going to be used.”—Service provider #1
3. Equity, consent, and trust must remain central to implementation	3.1. Clients should have control over their information and provide informed consent	“Making sure that the opportunity to opt out is always available. So when they do have an encounter, reminding them, ‘hey, you’re part of this community information exchange, so we see that you were connected to such and such thing, are you still happy to continue being part of this?’ Or just making it easier to maintain consent, but also opt out.”—Service provider #2
	3.2. There is the potential for data misuse or uneven access	“There’s so many and very different players in that community and everybody vying for the same funding dollars.”—Service provider #8

a

The names in the first quote are examples of community health workers and do not represent real individuals.

1. Information exchange can have potential benefits

Participants felt that CHIEs have the potential to support resource navigation, case management, and advocacy. In total, 10 SPs touched on this theme.

1.1. There is potential to close gaps in service navigation

Eight SPs described several ways a CHIE could improve their work, such as avoiding duplication of services, reducing time delays in accessing information, and learning more about what resources are available within medical and social service systems. One participant described an all-too-common scenario a CHIE could address:

“So, if there were an ability for people to share some of that [information] and you could say, ‘Oh, here’s Frank. Here’s his phone number. These are the days of the week he works. This is his role’… But at the moment, you’re just playing a phone number game, ‘Is that Frank? Do you know George?’ And you feel each other out.”—Service provider # 7.

1.2. There are benefits for micro-and macro-level advocacy

Seven SPs described possible benefits of a centralized system, such as making it easier to identify individuals at higher risk and in need of case management. SPs shared that CHIEs could help them understand SR needs, especially in cases when SRs may not be able to communicate these needs directly. SPs highlighted that insights from providers with ongoing relationships with clients would be especially valuable for understanding the experiences of SRs whom other SPs saw only occasionally. Participants also noted that CHIE data could reveal unmet needs, underserved communities, and issues in systems-level support.

“If we could have a systematic red flag during the regular new patient assessment to say that this [person] is vulnerably housed (or poorly) and in challenging social circumstances…chronic substance use, or poverty, or chronic psych, then maybe that’ll put a red flag to send that information exchange your way faster or the information exchange to all the health care workers working with you.”—Service provider # 10

2. Organizational readiness and system design will shape success

Many participants felt that the CHIE’s benefits would depend on how effectively the system is implemented. All 11 SPs discussed this theme.

2.1. There are organizational and capacity differences across agencies

A total of eight SPs discussed information related to this subtheme. Due to differences in disciplinary training, health professionals were concerned that one system of communication within the CHIE may become confusing due to the different terminology used across sectors and a lack of education about what role each SP plays. As one SP within the hospital system described:

“It’s confusing for an outsider like me… allegiances and who does what. And I think there’s more acronyms in that world than there are in my world, that it just is there’s so many people that do housing, and so many people that do harm reduction housing, and what does [Alberta Health Services] do for harm reduction? And I found that really, I’m still finding it hard to figure out.”—Service provider #8

In addition, some SPs worried that opening a CHIE to a broader range of providers could increase existing issues with documentation that may lead to stigmatization. They noted that many SPs outside palliative and homelessness-focused work have limited training in supporting vulnerably housed individuals, which could lead to notes about substance use or mental health being misinterpreted and carried forward as judgments, rather than providing context. Some SPs felt silos existed more so between agencies than professions due to differences in procedures, access to computers, and training. They suggested that training could improve the effective use of CHIEs, though some agencies might not provide clear use guidelines to their employees:

“But I do see the risks that could potentially be there. And then obviously, if you weren’t trained in it, how often would training happen to be part of this program so that you would have access to [it]? It could create a barrier for staff that doesn’t have access to a program like that.”—Service provider #3

2.2. Not another system: technology burnout and uptake concerns

Six SPs shared perspectives regarding technology burnout and uptake concerns. Across systems of care, SPs track client information in multiple databases that are often accessible to only a few organizations. Some SPs worried a CHIE could duplicate information across databases and contribute to technology burnout, leading to reluctance to adopt yet another system. One SP noted challenges with uptake in a prior patient information database:

“I think it can’t be too unwieldy. In a busy medical system, if there’s too many places to look for information, even [medical record system] can have its own issues looking in multiple places for information. I think it sounds great and sounds great to have multiple areas, but it’s not going to be used.”—Service provider #1

Other providers shared poor experiences with housing databases intended to support cross-agency information sharing; they shared beliefs that the CHIE would have the same problems:

“I think probably … similar issues in terms of some people have access, and some people don’t. And yeah, I don’t know how much that would open up resources for people or if it would just do a similar thing where some organizations have particular bits of information, and others don’t.”—Service provider #2

3. Equity, consent, and trust must remain central to implementation

Participants described challenges in information access, noting concerns about client consent and SPs’ responsibility for ensuring the appropriateness of the information they access. In total, nine SPs shared information pertaining to this theme.

3.1. Clients should have control over their information and provide informed consent

Eight SPs commented on SR consent and autonomy in relation to the CHIE. Participants felt the CHIE should support SPs in sharing information but also allow SRs to access resources/information independently. SPs emphasized that clients should provide ongoing consent and select which organizations can access specific information. SPs shared that, in their experience, individuals with cognitive difficulties, delirium, and other psychiatric concerns may not always be able to consent. However, SPs also discussed how conversations about consent should be ongoing, explained in an understandable language, and collaborative:

“Making sure that the opportunity to opt out is always available. So, when they do have an encounter, reminding them, ‘hey, you’re part of this community information exchange, so we see that you were connected to such and such thing, are you still happy to continue being part of this?’ Or just making it easier to maintain consent but also opt out.”—Service provider #2

In addition, many SPs expressed that a CHIE should be easy for both SRs and SPs to access via multiple pathways, e.g., community computers or through a cell phone. They shared that SRs should be able to self-identify, provide context to their presenting concerns, and easily track the information and resources they previously accessed:

It would be very obvious to the opener, “oh, here are all the different self-identified issues that the patient’s facing,” and maybe they need to take a different approach here.—Service provider # 7

3.2. There is the potential for data misuse or uneven access

Six SPs expressed concerns related to data misuse and access concerns across agencies. Although agencies must work together to share and update client information in a CHIE, community agencies and health care services often compete for the same funding. As such, some SPs worried that allegiances among agencies could lead to uneven balances of power and control over what services clients were being referred to. Many participants shared that there were certain agencies they would, and would not, refer clients to due to preexisting beliefs about the competency of certain organizations. For example, SPs shared concerns that clients might be judged, stigmatized, or receive poorer treatment through certain programs. In addition, they shared that they would prefer not to work with competing organizations. As one participant stated:

“There’s so many, and very different players in that community, and everybody vying for the same funding dollars.”—Service provider #8

Furthermore, some SPs felt that there could be a misuse of data wherein agencies would access the CHIE data for purposes that do not directly serve the client. Despite privacy regulations and other safeguards, some SPs worried that monitoring and accountability mechanisms governing access to health care information could be overlooked. Several other participants shared that organizations may collect sensitive client data to meet internal performance metrics or funding quotas.

Where I get lost on terms and conditions is, do you actually have a purpose, or are you just phishing? So, I think that’s important. The same thing with anyone accessing health care information. You can’t just access health care information. There needs to be a purpose for your looking into people’s lives, right?—Service provider # 2

Vignette: system navigation within a community-health information exchange

This vignette presents a hypothetical scenario illustrating how a CHIE might affect care for an SR like Dennis.

Dennis is still living with lung cancer and chronic obstructive pulmonary disease, but some aspects of his system navigation have changed within a CHIE. When he arrives at the hospital, staff can access his recent history, care plan, shelter interactions, and past referrals. He is asked to repeat his story less often, and triage nurses can see notes from his community social worker about oxygen tank needs and transportation concerns, which helps with discharge planning. Some financial information is also visible through the CHIE, allowing Dennis and his providers to see what financial resources Dennis has applied to. However, Dennis does not always have access to the latest CHIE updates, as he can only access his information through agency computers and his cell phone when he has access to an Internet connection. Furthermore, many agencies still have policies or resource constraints that limit what they can offer. Shelters continue to turn him away because of safety rules or bed availability, and other financial supports remain difficult to access. Although the CHIE reduces some repetition and improves communication with most providers, their interpretation of his records still varies. Some providers take the time to understand Dennis’s story and context, while others sometimes assume what the labels in his record mean without asking. Records written during his past mental health crises continue to shape how he is perceived.

Discussion

This study discusses three themes: (1) information exchange has potential benefits, (2) organizational readiness and system design will shape the success of information exchange, and (3) equity, consent, and trust must remain central to implementation. Findings reaffirm prior research that disconnected PEOLC systems create inequities for individuals facing precarious living conditions.^4,5,13 A well-implemented CHIE could address some inequities by minimizing duplication and miscommunication. Yet, if not approached through a health equity lens, CHIEs risk reinforcing the very inequities that they aim to address. The HEF centers health equity by considering four spheres of influence: (1) Systems of Power, (2) Relationships and Networks, (3) Individual Factors, and (4) Physiological Pathways. ¹¹ Table 2 summarizes key recommendations and cautions for CHIE implementation, organized by the HEF spheres of influence.

Table 2.

Recommendations and Cautions for a Community-Health Information Exchange

Health equity framework sphere of influence	Recommendations	Rationale/goal	Cautions/potential pitfalls
Systems of power	Implement centralized, cross-agency information sharing through a CHIE.	Reduces duplication of services, streamlines cross-agency communication, and supports equity in access.	Risk that preexisting agency hierarchies or dominant organizations control information.
Relationships and networks	Ensure SPs still engage directly with SRs to confirm and clarify information recorded in the CHIE; provide training on accurate and consistent documentation practices. Encourage collaboration and relationship-building across sectors and agencies.	Strengthens a client’s support system, improves understanding of complex client contexts, and places the responsibility of care on a community rather than a specific agency.	Requires ongoing oversight of CHIE documentation practices; collaboration may be hindered by organizational silos and allegiances.
Individual factors	Include SRs in CHIE design; ensure SRs can update their records and access their information in a CHIE via multiple modalities.	Supports clients’ agency and ensures services meet client-centered needs.	Risk that some individuals may not be able to access the CHIE via mobile devices, computers, and the Internet.
Physiological pathways	Design a CHIE that will accommodate the cognitive, emotional, and physical capacities of clients; Include considerations for adaptive consent processes.	Ensures accessibility, reduces burden, and supports equitable participation.	Inadequate consideration may reinforce inequities or exclude vulnerable populations.

CHIE, Community-Health Information Exchange; SR, service recipient; SP, service provider.

Systems of power

Systems of power can determine how policies and institutional practices may create or reduce inequities through the distribution of resources and opportunities. ¹¹ A CHIE could redistribute power by broadening access to information across agencies, thereby potentially equalizing case management workloads. Previous CHIE literature highlights the benefits of systemic efficiency and smoother communication between health and social services.^24,25 However, concerns were raised about fair access and existing power imbalances between organizations. Even within shared access, larger agencies with greater staffing capacity and involvement in the CHIE may exert disproportionate influence, leading to clients being referred more frequently to a small number of agencies with greater capacity or reputation in the community; this, in turn, may affect the referral pathways available to SRs. SPs thus cautioned that governance structures should safeguard against potential power differentials.

Relationships and networks

Relationships and networks influence health equity by providing support structures that can buffer or reinforce structural disadvantages. ¹¹ CHIEs could paint a more holistic understanding of an SR’s situation, which could strengthen relationships between SPs and SRs; however, that same information might be a barrier to relationship-building between SPs and SRs and lead an SP to hold preconceived notions about an SR.^19–21 This could potentially result in SPs withholding care or dismissing an individual’s symptoms.

Successful CHIE initiatives rely on shared data, financing, leadership, and vision. ¹⁷ Participants highlighted differences in digital infrastructure across agencies and willingness to work with one another, which may limit who can contribute data, discrepancies in training, and a funneling of referrals to more dominant agencies. Shared digital tools can foster cross-sector visibility. However, distrust among organizations and resource disparities in digital infrastructure and training may still limit true collaboration. For instance, not all staff may be able to easily use the system and communicate with each other in consistent ways. This may lead to further miscommunication among agencies and impact trust among collaborators. Thus, the success of an information-sharing platform is partially driven by social and organizational networks.

Individual factors

Individual factors involve how individuals’ attitudes, skills, and behaviors can be shaped by health outcomes. ¹¹ When individuals can identify and meet their own needs, they are more likely to access appropriate PEOLC. ⁶ However, SRs reported navigating disconnected systems that made it difficult to appropriately access the care they needed. SPs advocated for a CHIE accessible both to SPs and to individuals managing their own care. Thus, the establishment of a CHIE may be an opportunity to empower individuals with the information and tools needed to engage actively in their care. However, empowerment may also be compromised if SRs cannot control who views their data, cannot easily access their information, and cannot add their own self-identified perspectives and concerns to the system. As such, SPs shared that SRs should have the ability to access the CHIE and provide context to information in their record. However, as SPs noted, not all individuals always have access to devices or an Internet connection. Implementation must therefore ensure multiple modes of access (e.g., through trusted intermediaries).

Physiological pathways

Physiological pathways encompass individuals’ biological, physical, cognitive, and psychological abilities and how these abilities can hinder or lead to health inequity. ¹¹ In a system where individuals with mental health concerns and substance use are not well supported,^3,13 interviews highlighted the potential benefits and pitfalls of representing SR voices. CHIEs could reduce the need for SRs to re-explain their circumstances, but SPs raised concerns that CHIEs might not fully capture an SR’s life story. In addition, SPs raised concerns regarding the CHIE’s ability to accommodate circumstances where individuals temporarily lack the capacity to consent and how such a system could include safeguards for later review. Previous research cautions that a client’s ability to consent is crucial in the design of a successful CHIE, ²³ highlighting the need for adaptive consent processes and CHIE accessibility that addresses diverse psychological and cognitive capacities. SPs highlighted that clients’ ability to engage with CHIEs will vary based on literacy, cognitive capacity, and psychological ability, but they were unsure how the CHIE would account for this.

Limitations and future directions

This study aimed to understand the benefits and drawbacks of a CHIE for individuals requiring PEOLC in the Calgary, Canada, context. While SPs shared opinions of the CHIE, the voices of SRs regarding the CHIE are limited to a discussion on systemic difficulties rather than direct comments on the CHIE. Because all participants were connected to one mobile palliative care team, we were unable to capture experiences from agencies not collaborating with this program. Future research should more specifically explore how clients with diverse backgrounds, health literacy levels, and support networks interact with CHIEs. Understanding how factors such as mental health, substance use, or access to technology influence clients’ ability to engage with the system is the next step in designing equitable and effective CHIE implementations. In addition, research should explore the experiences of smaller, less connected community agencies and how a CHIE may benefit or hinder their work.

CHIE development and implementation remain in early stages across many communities, including Calgary, and perceptions will evolve. Future research should explore the practical effectiveness and equity impacts of CHIEs from both SR and SP perspectives. This should include ongoing evaluation of consent processes, data security, and how CHIEs influence care coordination for marginalized populations in PEOLC.

Conclusion

The establishment of a CHIE in Calgary, Canada, can potentially improve access to PEOLC and better identify individuals with complex needs by bridging gaps across the silos that exist within the current health care and social services system. ³³ However, given the varying experiences of CHIEs across the literature and concerns raised in this study, future studies should evaluate the use of CHIEs and similar systems with greater depth. For example, research could explore how individuals access information in CHIEs to manage their care and contribute self-identified information, as well as how interorganizational interactions with CHIE data influence trust, data quality, and care coordination. While grounded in the Calgary context, the findings highlight considerations applicable to other jurisdictions planning CHIE implementation. Specifically, attention to governance, cross-sector training, and adaptive consent models are universally relevant for connecting health and social care for structurally vulnerable populations. Thus, this study offers lessons for CHIE development in other urban centers with similar structural inequities.