Navigating the Complexity of Cancer Diagnosis

Peter JonesCo-Creation, Design for Care, Systemic Design

A team from OCAD University’s Health Design Studio [1] designed a series of synthesis maps for the Canadian Partnership Against Cancer to map and propose systemic responses to the clinical and social complexity of cancer pre-diagnosis in Canadian care provision. In the two synthesis maps presented here, we represented clinical diagnostic processes and the patient experiences associated with navigating the complexity of cancer diagnosis for three cancer sites, across three (representing 6) geographical regions. The maps were constructed in an iterative design and research process by the OCAD team as part of a larger CPAC collaboration to identify evidence-based opportunities for system-level change in cancer diagnosis to improve patient experience and clinical practices.

The maps present an integration of current knowledge from clinical practice and patient experiences drawn directly from interviews and workshops with patient advisors, primary care physicians and cancer specialists. The maps are available directly from CPAC on their online resources directory.

Two Maps Tell the Story

The clinical process map, A Clinical System Perspective of Pan-Canadian Cancer Diagnosis, represents the complex steps of current pre-diagnosis practices for patients living within three geographic regions. Three cancer sites were chosen to show differences between typical cancers. The companion synthesis map, Patient Experience of Typical Cancers in the Canadian Context, presents three convoluted patient pathways for the same cancers. The Patient map is presented as a metaphorical maze, consistent with the psychosocial experience of patients struggling with these cancers, as informed by patient advisors in interviews and workshops.

The primary purpose of both maps is to demonstrate the relative real-world complexity of cancer diagnosis processes as understood by the stakeholders of diagnosis, the patients and clinicians. The maps reveal the variability of access to care across geographies, indicating location as one of the significant social determinants of health outcome. While other determinants such as socioeconomic status and community factors have significant influence as well, many leading proposals for system intervention address factors relevant to location. The recommended interventions (e.g. promising solutions to these systemic problems) are developed from emerging models of diagnostic practice for improving cancer outcomes in Canadian provinces and territories, as well as established best practices currently used in other countries.

Link to PDF file of Clinical System map
A Clinical System Perspective of Pan-Canadian Cancer Diagnosis (Lead designer: Manpreet Juneja)

Both maps show the same interval of a cancer lifecycle known as suspicion to diagnosis. This diagnostic interval is recognized as the period between a patient’s presentation of concerns to receiving a confirmed diagnosis from a cancer specialist, up to the point of entering treatment for that diagnosis. Both maps clearly indicate the point of transition to cancer treatment for the pathways.

The maps refer to a 3x3x4 framework that portrays: 3 typical cancers, 3 (inclusive of all) Canadian geographies, and 4 (all) entry points to diagnosis. In both maps three geographies are visually defined toinclusively group six location contexts that share common healthcare resources within each, as inclusively as possible:

  • Urban/Suburban – About (45%) of Canadians live in or near large cities, and the majority of health resources are located in large urban regions
  • Rural/Small Town – Small towns are smaller than 20,000 people and rural areas served by towns and regions
  • Remote/Northern – Includes remote settlements in northern areas of provinces and the territories

The geographical model of healthcare access is presented to highlight structural inequities of care due to limitations of service provision in non-urban regions. The cancer diagnosis literature shows rural and remote regions, and the associated travel demands on residents, incur significant delays and poorer outcomes from delayed diagnosis, inadequate specialist care, and delays to treatment referral.

“It is well known that cancer patients with limited access to high quality specialized medical care have worse outcomes compared to their counterparts near large medical centers with medical and surgical oncologic specialists.”[2]

Both maps illustrate geographical inequity conservatively, whereby the process or journey is represented in realistic, close to median timeframes. The clinical map was based on generalizations from multiple inputs, and the patient map was primarily based on patient stories. Many cancer diagnosis cycles in Canada would have a longer duration than these cancer pathways; if care access and clinical processes were improved through recommended interventions, significantly shorter diagnosis intervals would be expected in these pathways.

Patient Experience Synthesis Map

Patient Experience of Common Cancers in the Canadian Context (Lead designer: Pupul Bisht)

Three Cancer Sites

Three scenarios are presented in each map in order to portray problematic issues in diagnosis discovered across many different cancer types. The three cancer types were selected because they are common across Canada, yet each is problematic for the geography in ways that disclose the underlying issues to be resolved in the pathway. Three different entry points (of the four in the framework) are shown in each map.

The cancers selected for each pathway were cancer sites with a high probability of survivorship for each scenario. But each is complex in its own regard, considering the finding of Redaniel, et al. (2015):

“The association between diagnostic intervals and cancer survival is complex, and should take into account cancer site, tumour biology and clinical practice.”[3] 

Colon cancer is shown at the top (first process) for both maps and presents the least-complex cancer diagnosis of the framework. While detectable by screening, screening adherence and the reach of screening programs remains quite variable across Canada. For a remote region, individuals may have a better chance of detection through programmatic colorectal screening than presenting to a primary care provider with symptoms, as access to primary care may be widely unavailable in some regions (and cancers can develop for years without symptoms). However, complications in screening occur due to access to care, following-up with communications, and travel demands. Lung cancer, a more complex site, was selected for the urban region to show the possible complications and delays in diagnosis even with the best access to clinical services. Non-Hodgkin lymphoma was chosen for the rural/town scenario, a complex cancer diagnosis that may benefit from high-quality primary care when physicians are sensitive to the often-vague symptoms and potential for urgent referral. As excellent primary care is available in many (but not all) Canadian small towns, this cancer was placed in such a scenario to indicate the clinical steps necessary to detect or refer for this cancer type and the potential for interventions (via standardized pathways, rapid referral pathways, and Rapid Access Centres) to significantly improve diagnostic outcomes.

Two other synthesis maps were developed in an associated Partnership project to portray the patient experience of colorectal and breast cancer screening. These visualizations are recommended to be studied in conjunction with the Suspicion to Diagnosis maps, providing a detailed composite of the experience of cancer screening diagnostics.

Key Takeaways

  • The two Cancer Pre-Diagnosis synthesis maps are provided as visualized qualitative research and narrative storytelling products. Their initial purposes are to be presented in discussions with clinical advisors, healthcare program administrators, patient advisors, and clinical research stakeholders to construct compelling arguments for transformative process change in Canadian cancer systems.
  • While every cancer disease process has unique requirements for diagnosis, an equitable and advanced cancer care system must develop resources and practices sufficient to address the complex demands of most cancers. To do this, common problems must be considered across cancer types and common solutions.
  • Canada’s large and geographically diverse country challenges the equitable reach and access to care, with populations distributed unevenly and the majorities located in urban centres. A range of process, programmatic, technological, and policy solutions can be implemented to provide more equitable cancer care to residents in all locations and contexts.
  • The lived experience of cancer diagnosis will always be emotionally challenging for patients and their families. The disease experience is compounded by inherent complications and uncertainties in the cancer care system. While many issues can be mitigated through improving pathways and communications, more systemic changes to the cancer process are necessary to help all Canadians with cancer.
  • Many clinicians are involved in cancer diagnosis, and cancer diagnosis pathways are largely focused on the transition to speciality care. Specialty cancer care practices can enhance diagnostics through the several process recommendations discovered in this study. However, the most significant improvements will come from focusing change to empower primary care practice in Canada, where physicians are variably experienced with cancer, and can be capacitated to identify and address the emergence of cancer in early presentation.

Problematic Delays and Barriers to Diagnosis

  • Service Waits. Specialists are heavily booked, scheduling around transitions (waiting for imaging, results) takes time, and the lack of perceived or indicated clinical urgency can result in waits.
  • Vague Symptoms, Patient uncertainty. Patients often ignore vague symptoms or put o? consultations until symptoms are intrusive or painful. Some cancers can develop to Stage IV without serious symptoms.
  • Pre-Diagnosis is not Urgent.  Delays arise in early diagnosis due to a lack of perceived urgency, the hesitancy or inability to take time off work (especially when cancer is not yet suspected), time and expense to travel to clinics or testing (remote and rural), and family support for travel.
  • Access to Care.  In remote areas there is a higher likelihood of poorer access to all levels of care. In small town/rural areas there may be excellent primary care, including continuing relationships between patients and physicians, and a community where providers will know one other.  However, there are fewer high-end facilities for cancer and imaging, and far fewer cancer specialists.
  • Distance/Transportation. Transportation time and costs are an issue for remote residents, who also see family doctors infrequently due to travel requirements. Arranging and taking medical transportation can take significant time, and long-distance travel is a daunting expense for many. Lifestyle and work con?icts, or other appointments needing travel, can delay the diagnosis process.
  • Communication Issues. Canada does not have a single seamless healthcare system. Cancer diagnosis necessitates the transition of patients from primary care to specialists, and there is a notable lack of care continuity in the cancer system. Multiple consultations are common with complex cancers, and physicians do not have norms for sharing patient information. There are often multiple transitions and referrals between clinics and physicians in different offices. Breakdowns or miscommunication can occur with the hando? of patients to referrals, with the timely scheduling of each consultation, and with the lack of common medical records or shared imaging.
  • Scheduling Specialist Care and Imaging. Specialists are typically booked well in advance for clinical visits and are often unable to open scheduling for new or suspected cancer referrals until an urgent primary care diagnosis or biopsy can be provided. While they may reserve time blocks for unexpected urgent referrals, these referrals have to be managed and justified by strong clinical suspicion or primary care diagnosis.

  • Transition / Handoff Delays.  Several typical delays are found in transitions between steps in care:
  • Time from symptom/suspicion to definitive diagnosis
  • Time from abnormal screening/specialist referral to definitive diagnosis
  • Time from symptom to provider evaluation
  • Time from screening test to diagnostic resolution
  • Time from diagnostic con?rmation to patient noti?cation

Recommended Interventions

A number of well-developed practices are known to be effective from literature and program evaluation that address the complex issues related to cancer pre-diagnosis processes.

  • Program Communications. Screening programs can provide proactive reminders to patients and help build health literacy, through direct communications from mail, phone, and in-person contact. Regular primary care visits (annual exams) can build a series of lab measures to establish a baseline, supported by deep patient histories and enhance diagnostic validity and care practices to increase options for learning and health promotion.
  • Patient Navigation. Patient navigator support programs, clinical staff, even resource nurses can assist patients in managing appointments, understanding their diagnostic procedures, and with the transitions from screening and primary care to cancer diagnosis. Telehealth can also provide a channel for patient navigation.
  • Alternative Primary Care Resources. In remote areas we can pursue the intentional development of alternatives to conventional family practice. Town health centres, Indigenous community centres, pharmacies, mobile checkup and testing and mobile “locum” clinicians can be coordinated in a local ecology of support. Telehealth services should be considered.  Primary care resources can also be supported in regions (e.g. health authorities) through family health networks, virtual teams, and inter-practice networks.
  • Technology interventions. In managing cancer pathways several standardized services stand out as increasingly effective: eConsult interprofessional email, Telehealth, and open medical records systems have great promise. Diagnostic informatics based on machine learning, as well as better point-of-care diagnostic references are significant emerging tools. Patient communication and medication management apps are helpful patient-facing technologies.
  • Urgent and Rapid Referral Pathways can provide faster treatment to those with clinically suspicious diagnoses early in the diagnostic cycle. Primary care staff must be educated for the appropriate reliance on urgent referral to effectively prepare the urgent referral case.
    Rapid Access Centres are specialized cancer clinics, often focused on a major cancer site, to provide responsive regional service for patients referred as urgent through primary care diagnosis. Family health and inter-practice networks, available through a single 800#, provide another model of rapid patient escalation.
  • Standardized Pathways. Several pathway models are recommended for consideration:
    • Benchmark throughput/wait times for a jurisdiction, considering program incentives and metrics
    • Establish standard pathways for well-known and problematic cancers 
    • Develop Urgent Referral Pathways for managing care transitions for clear cancer symptoms
    • Coordinated or centralized diagnostic services accessible to regional health practices

  • [1] Peter Jones, Principal Investigator
  • Pupul Bisht, Designer
  • Manpreet Juneja, Designer
  • Prateeksha Singh, Lead Researcher
  • Laura Halleran, Design/Workshop
  • Mahsa Karimi, Design/Workshop
  • And the team at CPAC

[2] Redaniel MT, Martin RM, Ridd MJ, Wade J, Jeffreys M. Diagnostic intervals and its association with breast, prostate, lung and colorectal cancer survival in England: Historical cohort study using the Clinical Practice Research Datalink. PloS One. 2015 May 1;10(5):e0126608.

[3] Clark JM, Heifetz LJ, Palmer D, Brown LM, Cooke DT, David EA. Telehealth allows for clinical trial participation and multimodality therapy in a rural patient with stage 4 non-small cell lung cancer. Cancer Treatment and Research Communications. 2016;9:139-142.