Priority 1: Use Technology to Support Navigation Activities to Achieve Equitable Outcomes for People with Cancer

Patients who have been diagnosed with cancer face innumerable challenges. These challenges may be due to personal circumstances, suboptimal systems, or both. The healthcare system and the organizations comprising it are complex, and this is particularly true for oncology care. Patients with cancer receive care from multiple types of providers—including their primary care providers, specialists, and other care team members—and sometimes through multiple healthcare organizations as they progress from a suspicious finding or symptom to diagnosis and treatment and into survivorship, palliative care, and/or end-of-life care. (1,2) This process requires frequent handoffs and integration of information from myriad tests, procedures, and appointments. These handoffs should be seamless, and all patients and members of their care teams should have accurate and complete information at their fingertips when they need it. Unfortunately, the U.S. healthcare system is fragmented. Despite the best intentions of cancer care teams to provide the best care to all of their patients, this fragmentation often results in unnecessary delays and inefficient delivery of care.

In addition to moving through cumbersome systems, patients face many personal obstacles, both medical and nonmedical. At each step of their cancer journey, they are presented with new information and treatment options, which can be confusing and overwhelming. Many of these treatments come with side effects that impact quality of life. The physical and emotional burden of cancer may make it difficult for patients to balance their care with other aspects of their lives, including work and family responsibilities. Many patients experience significant financial strain as they face high costs for care and reduced capacity to work, which may lead to housing and food insecurity.

These challenges, coupled with the labyrinthine nature of cancer care, create many vulnerable inflection points at which any barrier—administrative burden, socioeconomic obstacles, health or digital literacy needs, or lack of other forms of support—could result in losing a patient to follow-up or delays in life-saving care. (3) There often are institutional and community resources available to address patients’ personal needs, but patients may not be aware of them or have the capacity to seek them out amidst the other demands of managing their disease and care. Some examples of these social supports include public housing, transportation (e.g., gas cards, taxis, van service), and food assistance; financial counseling and support; behavioral health services; and childcare, eldercare, or other family services.

Evidence suggests that navigation programs that spend more direct time with patients or with care team members on behalf of patients (as opposed to working in electronic health records [EHRs]) are more effective at improving access to timely care. (4) Technology can help automate certain aspects of navigation and/or increase the efficiency of navigation processes so that care teams, including navigators, can spend more of their time caring for and interacting with patients. The Panel recommends using specific technologies to enhance navigation in the following three areas: coordinating cancer care, connecting patients with community and organizational resources, and informing patients and caregivers.

Recommendation 1.1: Develop and implement tools that facilitate efficient, patient-centered coordination of cancer care.

Technology can help healthcare organizations address both systems and individual barriers to the delivery of timely, high-quality care. Two key opportunities are: (1) increasing the efficiency of care delivery and coordination and (2) analyzing data in real time to identify patients most likely to benefit from additional support services.

Facilitate Efficient Workflow and Handoffs

In the early years of EHRs, there was hope that transitioning to digital systems would improve the safety and delivery of evidence-based care. While there have been successes, the design and implementation of effective EHR-based tools remain challenging. (5,6) Many clinical decision support systems have relied on alerts that must be resolved before clinicians can continue using the EHR. Overuse of these alerts has led to “alert fatigue.” A systematic review in 2020 found that between 46% and 100% of these alerts are overridden, often appropriately, which undermines their effectiveness and leads to dissatisfaction with EHRs. (7)

Behavioral science experts have begun to promote changes in EHR choice architecture rather than interruptive alerts to encourage best practices and help reduce unnecessary delays in care. This approach aims to understand how people use systems, then change the way information and options are presented to make desirable behaviors easier. These noninterruptive nudges can include things like designating the optimal or most commonly selected options as preset defaults, making relevant information more visible, changing the range or composition of options, and reducing effort through use of automatic orders or referrals for guideline-concordant care.

Timely handoffs between providers are of utmost importance throughout the cancer journey, including at the very beginning. Unfortunately, it sometimes takes months after a confirmed or suspected cancer diagnosis for patients to find an oncology team. This delay in care—which happens more commonly among vulnerable populations—can impact treatment outcomes and survival. (9) Nudges such as default conditional orders, in which the outcome of a screening or test can prompt an automated order for the next diagnostic step, can help make time-sensitive diagnostic workflows more efficient. An ongoing project at the University of Pennsylvania is testing whether this type of approach can reduce racial disparities in the time between an abnormal breast cancer screening result and biopsy. (10) Automatic referrals to appropriate providers and prompts for follow-up with patients who miss or are behind on recommended care could help ensure that no patient falls through the cracks.

EHR vendors and healthcare organizations should assess the choice architecture of their EHR systems and implement and evaluate changes to improve workflow and delivery of care. EHR vendors should integrate research-based design improvements—particularly those shown to increase health equity—into standard EHR systems so that all healthcare organizations benefit. Healthcare organizations should continually strive to identify opportunities to improve their health information technology (IT) interfaces to make it easier for care teams to deliver the best possible care to their patients. Research funding organizations such as the Agency for Healthcare Research and Quality (AHRQ) should support efforts to refine navigation-supporting technologies as part of their investments in digital healthcare and learning health systems (see Recommendation 3.2).

In addition to these nudges, technology—including, but not limited to, tools embedded in EHRs—could help providers identify the best physician or healthcare center to address the next step in their patients’ cancer journey. This can often be a challenge for providers not embedded within large healthcare organizations and for providers whose patients have rare cancers or complicated health needs. State medical boards, accreditation bodies (e.g., Commission on Cancer), and CMS should develop and maintain databases of oncology providers that can be searched based on location, specialty and subspecialty, and insurance accepted. These databases should be made available to EHR systems and third parties through application programming interfaces (APIs) so that they are easily accessible to providers in different settings, as well as to patients (see Recommendation 1.3).

Use Analytics to Link Patients with Resources

To achieve cancer equity, care must be delivered equitably (as opposed to equally) to meet the needs of the individual patient. This is true of navigation services as well. Technology can help healthcare organizations analyze patient data to identify those who would benefit most from additional care or support services. Depending on the goal and inequities within a given community or health system, analyses could include clinical data, information on social determinants of health (SDOH) collected via screening tools, or other patient-reported outcomes. Analytical methods could range from simple filters to complex artificial intelligence (AI) tools that predict need based on known risk factors or observed patterns of care. Regardless of the approach, all technology-based tools must follow guidelines for responsible development and use (see Priority 3).

Automated tools embedded within EHRs could help more efficiently identify cancer patients who would benefit most from additional resources and services and ensure that those connections are made. One key area of opportunity is triaging referrals to patient navigation services. Healthcare organizations should invest in and implement tools to identify patients who would benefit most from navigation and ensure that these patients are referred to navigation services (see Using Technology to Improve Referrals to Patient Navigation Programs). Other areas of opportunity for automated tools include clinical trial matching and financial counseling referrals. (11)

Healthcare organizations need to make sure they have the data they need to conduct these assessments. In many cases, this includes information on SDOH. Many institutions use screening tools to monitor patient distress and identify unmet SDOH needs. The precise language and approach to capturing SDOH data vary by organization, community demographics, and location; this is fitting, as screenings should be tailored for the specific audience. (12) At the same time, it is important for all systems to capture a minimum common set of data elements for the purposes of consistency, interoperability, and research.

Patient-reported data may also be captured using outreach through portal messages or text messaging. Many patients who do not feel fluent with technology or who lack access to broadband internet (see Priority 2) are still comfortable sending and responding to text messages, making this an accessible format for short-form communications like well-being checks. This approach has its limitations: text messaging is not end-to-end secure, which may raise privacy concerns in the exchange of health information, and any data captured through text message must be manually integrated with EHR data and followed by action. (13)

Recommendation 1.2: Develop and implement technologies to help navigators connect cancer patients with organizational and local resources.

Patient navigators’ time is at a premium, yet many professionals must dedicate hours each week to creating and maintaining an up-to-date portfolio of supportive resources for patients. Approaches to managing this information vary across and even within health systems, clinics, and institutions. In some locations, care teams collaborate to compile useful references and services; elsewhere, navigators keep their own lists of resources, often in a physical document like a binder or in a spreadsheet on their personal computers or devices. Navigators are skilled at determining patients’ needs and how to meet them, yet this knowledge often is not shared in any centralized or consistent way. This is both inefficient, as it involves significant duplication of effort and use of navigators’ time, and risky, as the departure of a single care team member could result in a great loss of institutional knowledge. The information also typically is stored in a separate location than other patient data, which may contribute to patients' falling through the cracks.

Healthcare organizations should establish navigator resource dashboards that allow navigators to link patients with appropriate and available resources that address their unique clinical and social needs. These dashboards should draw on the results of the EHR triage function outlined in Recommendation 1.1 to flag patients in need of navigation and include a living and searchable database of institutional and local resources. This type of tool could significantly reduce administrative burden and streamline referrals, allowing navigators to spend more time directly supporting patients. The resource dashboard should be integrated directly into the EHR. Healthcare organizations could leverage existing databases of local resources, such as Findhelp.org and Unite Us, (17,18) which already are used by many navigators and health systems. State departments of public health could also maintain databases of services. While the Panel does not specifically endorse any organization’s product, incorporating an information resource of this kind into an EHR-connected navigator platform is an important next step.

Recommendation 1.3: Develop and implement tools that provide vetted, personalized cancer-related information for patients and caregivers.

Every stage of the cancer journey presents patients with new information and support needs, from understanding treatment options and managing side effects to exploring clinical trials and addressing SDOH needs. Internet searches open the door to virtually endless amounts of information, much of it inaccurate, out of date, or intended to sell a product. Patients may become overwhelmed by the task of sifting through pages and pages of information to find what they need, and even the savviest may be unable to distinguish which sources are trustworthy and up to date.

Technology has potential to facilitate access to evidence-based information and reliable resources through patient portals, trusted websites, and mobile health apps. From 2020 to 2022, more than 6 in 10 people who had recently been diagnosed with cancer were offered and accessed their EHRs, a significant increase from prior years. (19) Healthcare organizations should ensure that their patient portals provide information important to patients—such as treatment plans and test results—in plain language. Use of live chat or chatbots could help answer patient questions, including outside of office hours. Whenever possible, patient-facing information and resources should be available in patients’ preferred language.

Many patients and caregivers look beyond their healthcare organizations for information and support. Patients should be able to conduct targeted searches easily and find results relevant to their specific diagnosis, treatment plan, and circumstances. This could be achieved through manual entry of terms into a vetted search platform; such tools would be even more powerful and precise if they were integrated with a patient’s own EHR data (see Recommendation 4.1). This personalized information could also help explain treatment options and identify clinical trials for which the patient may be eligible. The information presented should be in plain language, although patients should be able to dig deeper, as desired, to find more detailed medical and scientific information on specific drugs, procedures, side effects and symptoms, and other concerns. Importantly, patients should be able to find the information in their preferred language.

Technology can also link patients with resources to meet nonclinical needs that arise over the course of their cancer diagnosis and treatment. This could include connecting patients with peer support, behavioral health and social work professionals, and linkages to local services for help with transportation, housing, childcare, food, or financial assistance. Similar to the navigation resource dashboards described above, patient-facing tools and apps could include integrations with databases like Findhelp or Unite Us. They also could help connect patients to each other for peer-to-peer learning and support. For patients in active treatment, technology could incorporate features such as medication and appointment reminders and symptom trackers. In addition to helping patients manage their disease, these tools could also facilitate communication with care teams about patients’ day-to-day experiences.

If technology can be used to help some patients answer questions or access resources on their own, navigators and other care team members will have additional time to focus on more complex issues and possibly serve more patients. Patient-facing technologies that provide information can also lead to more meaningful conversations with providers and support shared decision-making.

Technology developers, advocacy organizations, and research funding organizations should invest in technology tools—such as patient-facing apps and decision support tools—that empower patients to navigate their cancer journey. The Panel envisions a suite of tools that can serve a range of patient needs during different phases of their cancer experience. All health technology tools, especially those intended for use by patients, must adhere to principles for responsible development and use (see Core Principles for Navigation Technology Development and Use). Key among these principles is that tools should be easy to access and use through a variety of devices and platforms. It is also critical that patient-facing tools draw from trusted sources of information (e.g., National Cancer Institute [NCI], American Cancer Society [ACS]) and peer-reviewed clinical guidelines published by professional organizations and that they are updated regularly. Promising tools that meet many of these standards—including Outcomes4Me—are available and used today. However, additional investment and effort are needed to ensure that all patients with cancer have tools that can guide them along the cancer journey.

As an extension of cancer care, patient-facing navigation technologies should be free to patients. Currently, making these tools free to patients requires that development and maintenance costs be covered by philanthropic funds or commercial sponsors (e.g., pharmaceutical companies). Funding sources for tools must be clearly disclosed to make users aware of their potential influence on the content or perspective of the tool (e.g., potential conflicts of interest or bias). As the evidence base for patient-facing technologies grows (see Recommendation 3.2), the cost of these tools could be covered through insurance, including by CMS, either directly or as part of an oncology care model. CMS should consider supporting pilot programs to determine whether patient-facing technologies can increase care quality and health equity.