Implementing and Sustaining Early Cancer Diagnosis Initiatives in Canada: An Exploratory Qualitative Study

Background: The interval between suspected cancer and diagnosis for symptomatic patients is often fragmented, leading to diagnosis delays and increased patient stress. We conducted an exploratory qualitative study to explore barriers and facilitators to implementing and sustaining current initiatives across Canada that optimize early cancer diagnosis, with particular relevance for symptomatic patients. Methods: The national study included a document review and key informant interviews with purposefully recruited participants. Data were analyzed by two researchers using descriptive statistics and thematic analysis. Results: Twenty-two participants from eight provinces participated in key informant interviews and reported on 17 early cancer diagnosis initiatives. Most initiatives (88%) were in early phases of implementation. Two patient-facing and eight provider/organization barriers to implementation (e.g., lack of stakeholder buy-in and limited resources) and five facilitators for implementation and sustainability were identified. Opportunities to improve early cancer diagnosis initiatives included building relationships with stakeholders, co-creating initiatives, developing initiatives for Indigenous and underserved populations, optimizing efficiency and sustainability, and standardizing metrics to evaluate impact. Conclusion: Early cancer diagnosis initiatives in Canada are in early implementation phases. Lack of stakeholder buy-in and limited resources pose a challenge to sustainability. We present opportunities for funders and policymakers to optimize the use and potential impact of early cancer diagnosis initiatives.


Introduction
Approximately one in two Canadians will develop cancer in their lifetime and one in four will die from the disease [1,2]. The pre-diagnosis interval, or interval between first patient presentation with symptoms and cancer diagnosis, is a critical part of the cancer care continuum, yet care is often fragmented, characterized by long waits and lack of provider coordination [2,3]. Optimization of this interval, or early cancer detection, can result in improved patient experiences, reduced time to cancer diagnosis, and may contribute to improved effectiveness of treatments and decreased health system costs [1][2][3][4].
The Canadian Partnership Against Cancer (the Partnership) is a federally funded organization that is mandated with effecting systems change to improve cancer control and care for individuals with cancer in Canada. The Partnership aims to reduce cancer incidence, deaths from cancer, and improve quality of life of individuals with cancer. In 2019, the Partnership launched the 2019-2029 Canadian Strategy for Cancer Control [3], which aims to engage actors from all Canadian provinces and territories to optimize cancer care pathways and improve equity of the cancer care system. Specifically, the Partnership identified significant inequities in cancer care for underserved individuals (which can include those who live in rural, northern, and remote Canadian jurisdictions), as well as for First Nations, Inuit and Métis communities [5][6][7][8][9][10][11]. The Strategy outlined eight priorities, one of which is to diagnose cancer faster, accurately, and at an earlier stage. This priority aims to optimize rapid access to diagnosis for individuals with suspected cancer (e.g., individuals who present with symptoms) and to strengthen screening efforts across Canada.
The impact that the COVID-19 pandemic has had on cancer care and patient outcomes is not fully known, however, early studies show significant reductions in access and use of cancer screening and early diagnosis initiatives in Canada [12][13][14][15]. Estimates suggest a 40% decrease in primary care visits, 50% decrease in hospital visits via emergency departments (where~30% of cancers are diagnosed in Canada), and decreased screening rates across the country [12][13][14][15]. Decreases in primary care visits, hospital visits, and screening rates can potentially impact patient outcomes, as patients are less likely to be diagnosed with early stage cancer unless they are seen by their health care provider for cancer screening or for work-up of new symptoms. As the health care system aims to return to normal, it is imperative that early cancer diagnosis initiatives are optimized to provide care to individuals with suspected cancers. Understanding the barriers and facilitators to implementation and sustainability of early cancer diagnosis initiatives is a necessary first step in this process.
To inform development and operationalization of the Canadian Strategy for Cancer Control, particularly in the current context of the COVID-19 pandemic, the Knowledge Translation (KT) Program, on behalf of the Canadian Institute of Health Research (CIHR) SPOR Evidence Alliance and the Partnership, conducted an exploratory qualitative research study to summarize current perceived barriers and facilitators to implementing and sustaining early diagnosis initiatives in Canada. This study was conducted as the Partnership aims to improve and support the development, implementation, and sustainability of accurate and rapid diagnosis for individuals with symptoms or suspected cancers across the nation; fulfilling the Canadian Strategy for Cancer Control's priority to diagnose cancer faster, accurately, and at an earlier stage. The objectives of the study were to describe the perceived barriers and facilitators to the implementation and sustainability of current early cancer diagnosis practices across Canada. This information will inform the Partnership's activities to operationalize their key priority.

Study Design
We conducted an exploratory qualitative research study, composed of key informant interviews and a document review of materials submitted by key informant participants. This study was designed to understand the perceived barriers and facilitators to implementing and sustaining early cancer diagnosis initiatives within the Canadian context including perceived impacts (negative or positive) of the COVID-19 pandemic on early cancer diagnosis efforts. We report our study using the COnsolidated criteria for REporting Qualitative Research (COREQ) [16].

Participants
In collaboration with the Partnership, we purposefully recruited interview participants. Participants were identified via the Partnership's established networks, which were formed over years of collaboration with healthcare professionals and organizations, patients, and communities [17,18]. These participants were identified by the Partnership as potential study participants if they were directly working on or previously worked on an early cancer diagnosis initiative. The potential list of participants identified initially included a range of initiatives across Canada and in different rural and urban settings. A snowball sampling approach was used to identify additional key informants as needed. Participants were recruited by KT Program researchers via email. In this email, participants were provided the study information sheet. Participants were asked to respond if they were interested and/or if they felt their work fell within the study's objectives. If participants did not respond, they were sent a follow up email. If they did not reply to the follow up email, they were not contacted again.

Data Collection and Outcomes
After providing informed consent, key informant participants participated in a single interview approximately 60 min long conducted between 28 September 2020-20 January 2021. Interviews were conducted by two experienced researchers (LDH, TL); the interviewers did not hold relationships with the study participants. Interviews were offered in French and English. An interview guide was co-created with the Partnership to identify characteristics of initiatives, whether and how the initiatives were evaluated, and barriers and facilitators to implementation and sustainability of the initiatives. Participants were also asked to describe opportunities to optimize early cancer diagnosis initiatives in Canada and to share relevant documentation (e.g., internal reports, standard operating procedures, webpages, or published articles, triage forms) for described initiatives. In addition, interview participants were asked to provide clarification of any relevant data from the document review. Interviews were audio-recorded and transcribed verbatim. Participants were also followed up to provide documentation related to their work in early cancer diagnosis after the interview if they had not done so prior.

Data Analysis
Participant and initiative characteristics were descriptively analyzed. Where relevant, data derived from the document review were included in these descriptive summaries. Two researchers analyzed the data from the document review and 20% of the documents were double coded until 75% agreement was reached. Following this, documents were reviewed by one researcher and descriptive data were abstracted to a tracking table. These data were used to describe initiatives. Interview transcripts were double-coded by two researchers (LDH, TL) using NVivo 12 qualitative software [19] and analyzed using a thematic analysis approach [20,21] to identify emergent themes. Researchers double coded 20% of the data until 75% agreement was reached; discrepancies were resolved by a third party (CF). In order to review accuracy and complete missing details, study participants were asked to perform a member check [22] on a summary of interview notes and data abstracted from the submitted documents. This study was exempted from research ethics review.

Participant Characteristics
A total of 22 individuals participated in the interviews. Participant roles varied and included primary care physicians, surgeons, oncologists, and hospital and government administrators. Participants represented eight provinces (n = 9 Ontario, n = 3 Quebec, n = 3 Nova Scotia, n = 3 Alberta, and n = 1 British Columbia, Saskatchewan, Manitoba, Newfoundland and Labrador, respectively). Fifteen participants contributed to the document review and 19 participants completed the member check.

Initiative Characteristics
Participants described 17 initiatives across Canada. See Table 1 for a summary of initiative characteristics. The initiatives had various (and sometimes multiple) points of entry to the diagnosis program, such as via primary care providers, screening, and/or emergency rooms. Targeted disease types varied by initiative with some providing diagnostic services on more than one disease type. Of the 17 initiatives, 11 were symptoms focused. The remaining initiatives focused on optimizing provider processes, such as primary care provider education (e.g., seminars about how to recognize early cancer diagnosis symptoms in primary care), or standardization of a surgical triage system. The two initiatives focused on care for Indigenous populations provided cultural competency training to staff and developed educational materials to improve patient reach. These initiatives also partnered with Indigenous leaders, Elders or groups in processes of planning, implementation and decision-making. Nearly all (15/17) initiatives were in a planning or early implementation phase and half (8/17) prepared plans for initiative sustainability/spread, although none had begun this sustainability work at the time of interview.

Evaluations of Early Diagnosis Initiatives
Most of the initiatives were in early implementation phases and were beginning data collection; one initiative had completed assessment of intervention impact. Example performance metrics collected included wait times to diagnosis or treatment (with comparisons to provincial wait time targets), wait times from initial presentation to care provider to diagnostic imaging, time from biopsy to report/diagnosis, patient volume and testing, patient satisfaction, and system efficiencies (e.g., repeat tests; percent of emergency department visits leading to diagnosis).
Participants noted that evaluation data on early diagnosis initiatives had the potential to benefit patients, providers and the system by demonstrating weaknesses, strengths, and value; however, resource and personnel shortages were a barrier to routine data collection. The use of digital or virtual platforms was a facilitator to conducting routine initiative evaluations.

Barriers to Initiative Implementation and/or Sustainability
Common barriers and facilitators to implementation and sustainability were identified across the initiatives. We identified ten barriers to implementing or sustaining early diagnosis initiatives in Canada; these are described in detail alongside participant quotes in Table 2. Two barriers were patient facing and eight were provider/organization facing. Patient-facing barriers included lack of access to primary care providers to facilitate referrals/enrollment to initiatives and lack of access to initiatives due to patient geography. Provider and organizational barriers included lack of cooperation from colleagues to participate in initiatives, lack of government/policymaker buy-in, limited staff capacity to support/sustain the initiative, lack of awareness about initiatives and/or screening/diagnosis guidelines (which was closely tied to non-adherence to screening or diagnosis guidelines resulting in delayed access to initiatives), burden on primary care providers to navigate care pathways, lack of data to facilitate reporting of initiative impacts, technological gaps, and limited funding/resources to implement and sustain initiatives.

Facilitators to Initiative Implementation and/or Sustainability
Five facilitators to initiative implementation and sustainability were identified ( Table 3). Many of these were the converse of identified barriers and included: leadership and organizational buy-in, data availability on initiative processes and impact, leveraging networks to maintain coordination among stakeholders, small-sized organizing groups, and use of virtual elements.

Opportunities for Early Cancer Diagnosis Initiative Programs and Research
Participants identified strengths and opportunities across Canadian early cancer diagnosis programs. Participants perceived the use of initiatives that included multidisciplinary teams, patient navigators, and central referral systems to contribute to the success of an initiative. Multidisciplinary teams included collaborations among different roles such as, diagnostic imaging, pathology, medical and/or surgical oncology and administration to facilitate cancer diagnosis. Patient navigators acted as a point-person for individuals and staff involved in the early cancer diagnosis pathway. These navigators supported scheduling, communication with patients and coordination with cancer care providers. Many participants described the role of navigators as a "key facilitator" to initiative success and sustainability; participants perceived the use of navigators to be favorable among both patients and providers. Finally, participants perceived use of central referral systems to facilitate use of early diagnosis initiatives. For instance, pathways that provided patients with a single location to complete all diagnosis work-up (e.g., 'one-stop-shops') were perceived to improve efficiency and reduce burden on both patients and providers and simplified processes of scheduling, referrals, and testing. Practitioners may have limited buy-in (e.g., unwillingness to use early cancer diagnostic pathways, guidelines). This was pronounced when initiatives impact perceptions of existing hierarchies/roles (e.g., use of multidisciplinary clinics). Additional barriers include lack of cooperation between multiple organizations and lack of buy-in among an organization's administration.
"And that's the biggest thing I've encountered in terms of learning how to navigate this bureaucracy where everybody's trying to protect their own little silo or whatever. Instead of trying to work together"-Surgeon "So I think the most important thing is that it can be challenging to get people wearing a lot of different hats to trust each other and come together with a common agenda. And that takes a lot of work."-Medical Director Limited staff capacity to support/sustain initiative Early cancer diagnostic initiatives often require significant administrative efforts to coordinate and sustain. These tasks are compiled to busy providers' tasks which adds increased burden and decreases motivation for providers to participate in the initiative.
"I think the big one for the navigators can they've gotten really busy, which is fantastic. You know, they're really busy because there's no resources like they're doing a lot of clerical stuff and that remains a barrier. So they spend a lot of time faxing and know entering data and typing and computers and that kind of stuff. And that's not really the best use of their time."-Oncologist "And it was exceptionally frustrating as a family physician because you literally spent hours banging your head against the wall, doing personal emails to everybody under the sun to try to get somebody to care for your patient. And it's that frustrating for me. Imagine it's like for the patient right now. It's certainly unacceptable."-Medical Director Implementation/ Sustainability Provider/System Please be open to other means. Make it easy for the referring family physician, because we spend a lot of hours trying to connect with people to get our patients that really need help."-Medical Director "There are gaps for patients. They are faced with delays that create high levels of anxiety and distress. From the primary care provider perspective, there is no organized and coordinated intake process for patients with suspicious cancer symptoms or signs. It's on the backs of family doctors to figure out how to get a positive diagnosis and then specialty programs (cancer centres) will then accept referrals for those patients. There's evidence and data that delays not only impact patient anxiety, but can impact disease severity,"-Senior Administrator Implementation Patient/Provider  "The bottleneck in our system right now is the papers get handed around and it takes a long time from the time a family doctor sends it in and it sits on a fax machine, goes to the guy, the guy looks at it, the guy sends it back and the next guy looks at it. So the data we've tracked recently, that takes five to seven days just to get the paper to the person that's going to do the tests."-Surgeon "They're not always able to pick up images electronically and view them so that your radiologist can do, for example, the image guided biopsy. And so then it's repeat or slightly archaic, but it actually happens . . . Patients are asked to bring CDs of their mammograms or their images from one spot to another. So, as you can imagine, there's a lot of issues with that."-Group Manager Data availability on initiative processes and impact Impact data on initiative success (e.g., who the initiative served; impact on patient-important and clinical outcomes) was of value to both internal and external initiative stakeholders and facilitated buy-in. These data can also be used to iteratively make improvements to initiative processes and reach.
"I think it's just capturing all those wait times. So we were able to show to go back and look. Now we'll be able to show that we sort of cut the wait time to get to a transition by, I think more than a half. Like more than 50 percent."-Oncologist "And so having the data to say, OK, here's what we're seeing, does this resonate with you? What does this look like? OK. There's an issue here. What are what are some of the strategies having that foundation and data is a huge enabler. And at the same time, it's very difficult to have exactly the data you need at the granular level that you need as well. So it can be a bit of a challenge. But where we have it, we leverage it and it's very effective."-Program Manager Implementation/ Sustainability Provider/System Leveraging networks to maintain coordination among stakeholders A network of colleagues working together towards a shared goal was essential to expediting diagnostic processes and sustaining early cancer diagnostic initiatives. These networks were particularly useful to facilitate collaboration across clinical departments or specialties.
" [We have] got the advantage of being a . . . clinical network . . . We've got that relationship with . . . 15 others besides us and so we can draw them in and work very collaboratively as needed. They've got very broad networks as well. So we can leverage that out as required to help with the work that we're doing"-Senior Administrator

Smaller sized organizing groups
Some participants reported the utility of an 'implementation team' responsible for day-to-day initiative processes. Smaller teams were also perceived to facilitate more streamlined discussion of patient cases.
"The smallness, in that we there's a small number of people that we can communicate pretty easily. It wasn't too complicated to do. It wasn't like we had multiple centers that join together and pull this off."-Oncologist "And also because it's going to the three of us, we'll discuss the cases every Monday together as a group with input from pathology, radiology, gastroenterology . . . Things like that. These are all discussed and we can get things going quickly so that when we send the consult to the medical oncologist, to the radiation oncologist, they already know about it because we've already discussed it."-Surgical Lead

Implementation Provider
Use of virtual elements to facilitate care Virtual platforms to enhance patient population reach (particularly for those living in rural areas), promote patient and provider education, and support initiative efficiency (e.g., EMR capabilities) were identified as a facilitator to implementation and sustainability.
"We're using virtually a lot at our institution, both for educational, for all of our meetings . . . patient engagement and support. We have some support groups [for patients]"-Medical Director "I can say in primary care, 80 percent virtual, 20 percent in person . . . [and] there's every intention that virtual will persist beyond the pandemic and will be utilized more"-Medical Director Participants also identified a number of opportunities for program developers seeking to improve or sustain early cancer diagnosis initiatives in Canada. First, participants recommended that initiative developers build relationships with relevant stakeholders, particularly at the policymaker level. Such partnerships between organizations rather than individual relationships between persons (e.g., program developer and policymaker) were perceived to support sustainability of initiatives despite staff turnover. Participants recommended that initiative leads use impact data to gain buy-in from policy/government organizations and to specifically highlight impact on patient or system outcomes. Second, participants highlighted the need to develop early cancer diagnosis initiatives focused on First Nations, Inuit and Métis and underserved populations. Participants recommended developing longstanding collaborations with elders and community leaders and including provider education on culturally safe care approaches. Third, participants stressed the importance of co-creating early diagnosis initiatives with patients, primary care providers, cancer care specialists and administrators. For instance, some participants stressed the importance of including patient advisors on steering committee panels to support and inform initiative development or sustainability; these advisors included individuals with lived experience who are engaged from the onset of initiative development and support initiative processes (e.g., committee meetings) and deliverables (e.g., educational materials). Additionally, co-creation with primary care providers (who are often not engaged in initiative development) may result in streamlined processes for referrals and can support the development of efficient and feasible diagnosis pathways for patients. Fourth, there were perceived opportunities to invest in resources to support initiative efficiency, such as electronic patient records compatible with current systems and across organizations, central referral systems, and diagnosis equipment (particularly in rural areas). Finally, participants reported a need to define key metrics to evaluate initiative success and recommended the stipulation of minimum data collection requirements across initiatives. These data were perceived to be facilitators to policymaker buy-in, thereby improving resource allocation and initiative sustainability. However, participants also highlighted the need for dedicated financial and personnel resources to support such evaluations.

Discussion
We conducted an exploratory qualitative study composed of key informant interviews and a document review. The study included 22 participants representing 17 early cancer diagnosis initiatives across 8 Canadian provinces.
Our study fills a gap in the literature on systematic exploration of barriers and facilitators to implementing or sustaining early cancer diagnosis initiatives in the Canadian context. The few studies describing barriers to early cancer diagnosis services focused on barriers to accessing existing programs. For instance, a recent systematic review described barriers to accessing lung cancer diagnosis programs [23]. The studies in this review showed that poor relationships between primary care providers and patients, lack of accessibility of services for patients due to geography, and patient and provider lack of awareness of cancer symptoms and treatments were barriers to access. Additionally, these barriers are compounded for underserved or underrepresented communities, racial minorities, immigrant populations, or those living in rural or remote areas [24,25]. Our study identified 10 barriers at the patient, provider and organizational levels that challenge initiative implementation and sustainability and five facilitators that can be leveraged to optimize initiative delivery.
Participants in our study identified opportunities to address gaps in early cancer diagnosis care in Canada. Indigenous peoples' cancer rates continue to rise, yet screening rates are lower compared to non-Indigenous populations [26]. This presents an opportunity to standardize the use of cultural competency programs across early cancer diagnosis initiatives and to co-develop tailored pathways or services to support Indigenous individuals presenting with suspected cancer. Similar opportunities exist to provide tailored initiatives and improve accessibility for other priority groups, such as immigrant or non-English speaking populations and individuals living in rural areas.
There is a critical need to co-create diagnostic initiatives with patients and primary care providers. A recent systematic review failed to identify any interventions that involved patients in the process of early cancer diagnosis after initially presenting to primary care [27]. Additionally, this review identified many barriers at the primary care provider level; mainly, these were attributed to primary care providers being over-burdened and feeling unsupported to keep up with multiple referral systems or rapidly changing diagnosis guidelines. Co-creation of streamlined pathways with primary care providers may improve feasibility and efficiency of initiatives and may result in improved buy-in and uptake of programs by both primary care physicians and cancer care providers [28].
Finally, our study revealed that budget cuts often preclude initiative administrators from collecting evaluation metrics; those that conduct evaluations vary significantly with regards to the type and frequency of data collected. These challenges have been indicated in the literature [29,30]. Tools such as the Aarhus checklist, developed using a systematic review of instruments to measure outcomes in early cancer diagnosis research and an expert consensus approach, provide guidance on minimum reporting criteria of early cancer diagnosis initiatives [31]. Consistent reporting using such templates and standardized evaluation metrics can promote consistency and transparency in early diagnosis definitions and may facilitate process (e.g., wait times, time to diagnosis) and impact (e.g., survival, treatment completion) comparisons across interventions, regions or organizations. Given many of the early diagnosis initiatives in Canada are in early implementation phases, there is a timely opportunity to standardize routine data collection to assess process and impact outcomes.
Our study is not without limitations. Our interviews were limited to 22 pan-Canadian participants and participant representation from the territories and two Atlantic provinces were lacking. Therefore, data included in this report and the 17 initiatives highlighted are not representative of all existing early cancer diagnosis initiatives in the country and may have overlooked other efforts. This study was not intended to be a comprehensive assessment of initiatives and instead the focus was to understand barriers and facilitators to implementing early cancer diagnosis initiatives. There was no specific framework that guided the analysis since this was an exploratory study. Next steps for consideration can include using the Theoretical Domains Framework to categorize the barriers and facilitators, which can inform development of strategies to overcome the barriers and leverage the facilitators [32]. However, our findings are consistent with a previous study conducted in 2018 [6], which identified similar challenges and opportunities to advance early diagnosis cancer care in Canada, suggesting there has been little progress made with respect to implementation of early diagnosis initiatives in recent years. Finally, our data after reaching a 75% agreement by two researchers on the first 20%, were only reviewed independently and therefore data may have been missed or interpreted from one perspective; however, this risk was mitigated through participant validation, or member checking of data.
Diagnosing cancer faster, accurately and at an earlier stage is a key priority of the 2019-2029 Canadian Strategy for Cancer Control [3]. Over the next five years, the Canadian Partnership Against Cancer will leverage findings from this exploratory qualitative study, as one of several inputs, and partner with Canadian jurisdictions to continue to test innovative models of care that expedite cancer diagnosis, especially for First Nation, Inuit, and Metis peoples and underserved populations.

Conclusions
Cancer diagnosis initiatives in Canada are in early implementation phases; stakeholder buy in and limited resources challenge the sustainability of these interventions. In this paper, we present ten barriers and five facilitators to implementing and sustaining early cancer diagnosis initiatives, along with key opportunities for funders and policymakers to optimize the use and potential impact of such initiatives.  Data Availability Statement: Data sharing is not available for this article due to the confidentiality and privacy assured to the participants.