Culturally sensitive navigation to improve access to cancer care and treatment

The impetus: Native American Cancer Initiatives (NACI), Inc. set out to address disparities in cancer care for American Indian (AI) and Alaska Native (AN) patients. Barriers to care for AI/ AN cancer patients often include lack of transportation, long distances to reach providers (many travelling over 100 miles), and hesitancy to seek care due to mistrust of the health care system. Additionally, because AI/AN patients come from more than 575 federally recognized tribes and hundreds more state-recognized tribes—many with their own distinct languages and cultural practices—hospitals often struggle to provide bilingual services or adapt cancer care to the unique perspectives and needs of each tribal patient.

The innovation: NACI, Inc. implemented cultural navigators called “Native Sisters” and “Native Brothers” to meet the needs of AI/AN communities and repair the relationship between AI/AN patients and health care providers. To promote a localized approach to cancer navigation, the Native Sisters and Brothers are trained both in national guidelines for navigation and on the specific cultures and values of the patients they serve (e.g., beliefs, communication preferences, perceptions of end-of-life care). Additionally, many of the navigators are from the tribal communities they serve. NACI also developed an integrated tablet software called NACI Care™ that tracks and evaluates the performance of each Native Sister and Brother and overall program performance.

The impact: Enrolled AI/AN patients share the positive impact of NACI, Inc.’s program: “I was afraid of all of the white coats and those people telling me what to do. Native Sister listened to me and helped me find the path back to balance and hope and happiness;” “[I] had to cherish the lessons cancer was gifting me…[I] needed to get back in balance while coping with cancer and cancer treatments...Native Brother was amazing in helping me through this journey.” Looking ahead, NACI, Inc. plans to advocate for Department of Labor codes to pay unlicensed community navigators, secure consistent funding in the form of contracts, and expand use of the tool.

Bilingual (EN-ES) discharge summaries to achieve language access

The impetus: Moffitt Cancer Center has a centralized language services department with both language interpreters and translators to serve their non-English speaking patients. The translation team noticed that delays in discharge and lack of accessible discharge documents in the patient’s medical record were making it difficult for cancer patients and their loved ones to access and share care plans post-discharge.

The innovation: Moffitt’s language services team partnered with their clinical informatics team to streamline and automate the English to Spanish translation process for cancer patients’ discharge documents. The team implemented auto-text features within the patient’s discharge summary, expediting the process for translation. The bilingual summaries then automatically drop into the patient portal for easy, on-demand access. With the simplified workflow, cancer patients and their caregivers leave the hospital with a hardcopy and digital version of their bilingual discharge paperwork.

The impact: The streamlined translation process for discharge instructions resulted in more effective and timely discharge. It reduced the number of clicks and steps for nursing staff to provide bilingual summaries to patients and families. Looking ahead, Moffitt hopes to expand auto-text translation to additional languages.

Culturally sensitive media intervention to increase clinical trial diversity

The impetus: Providers at the University of Illinois Cancer Center noticed that the cancer patient populations they serve are not well represented in cancer clinical trials. A team of providers conducted an analysis of clinical trials leading to FDA approvals for breast cancer drugs over the last 10 years. They found systemic underreporting of race and ethnicity, and underrepresentation of Black women. The team reasoned that one cause of this could be the lack of culturally sensitive discussions that address the concerns Black women may have about clinical trial enrollment.

The innovation: University of Illinois Cancer Center launched a pilot program to increase representation of Black women in breast cancer clinical trials. The team, in partnership with community organizations, plans to conduct qualitative interviews with Black women diagnosed with cancer and their providers to understand stakeholder perceptions. They will invite a subset of these patients to story circles to discuss perceptions of clinical trials in a group format. Next, they will develop a culturally sensitive video intervention that will deliver information about clinical trials and address misperceptions about clinical trial enrollment. This community-based participatory approach focuses on continuously gathering patient and community input from ideation through implementation.

The impact: While this program is still in the pilot phase, a similar approach tested by the same research team found an increase in genetic counseling appointments among Black women from 50% to 70% following viewing of a culturally sensitive media intervention.

EHR supported nurse navigation tool to improve time to treatment

The impetus: Montefiore serves a diverse patient population which spans the wealthiest and poorest zip codes in the U.S. To ensure equitable care, Montefiore studied the drivers of inequity in cancer treatment and found that race, socioeconomic status, and comorbidities impact cancer care timelines and outcomes. At their own organization, they found that for head and neck cancer patients a delay of over 60 days from diagnosis to first treatment could independently double a patient’s chances of mortality and recurrence of cancer. Further, they found that African American patients, patients on public insurance such as Medicaid, and patients diagnosed at another institution were twice as likely to experience significant delays in care.

The innovation: Montefiore developed an EHR-based navigation portal and a cancer timelines dashboard to decrease time to treatment for head and neck cancer patients. When a patient is diagnosed with cancer by a pathologic diagnosis, the interface creates a timestamp and begins tracking the patient’s journey using data sources such as billing data and the patient’s treatment plan to automatically generate real-time data on time to treatment initiation. To support this initiative, Montefiore hired a nurse practitioner to dedicate part of their FTE toward using the interface to help navigate head and neck patients from diagnosis to start of treatment.

Within the dashboard, Montefiore will start measuring the following timelines: from ordering imaging to interpretation, pathology collection to result, CT simulation to radiation delivery, chemotherapy treatment plan to first infusion, and scheduling surgery to completion. Extracting data on these additional timepoints will allow Montefiore’s cancer program to understand how to address the bottlenecks and optimize outcomes for all patients.

The impact: Montefiore piloted the program with head and neck cancer patients. Since implementation, the program decreased treatment delays and created a source of accountability for timeliness of key care milestones. Mean time to treatment initiation (TTI) decreased from 40.1 days to 28.4 days. The number of patients who experienced TTI>60 days was reduced from 14% to 1.9%. Montefiore used this data to demonstrate proof of impact of their dashboard and hopes to scale it across all cancer patients.

Tablet-based daily symptom support to better meet the needs of rural cancer patients

The impetus: Penn State Cancer Institute looked to the research and saw that daily symptom tracking for advanced cancer patients can have a survival benefit. However, many symptom tracking tools and programs are highly nurse-driven or require additional clinic visits, which can create barriers to access for patients in rural areas. The team identified a need for a daily symptom tracking tool that would accommodate and address the specific needs of rural patients, recognizing that they face higher cancer diagnosis rates, more severe symptoms, and lower cancer survival rates.

The innovation: Penn State Cancer Institute developed the Nurse AMIE (Addressing Malignancies in Individuals Everyday) tablet to support patients who want in-between visit support but cannot travel to clinics. Patients interact with the platform daily to answer symptom questions and receive evidence-based interventions and support, such as recommendations for physical activity, mindfulness meditations, or cognitive behavioral therapy. When a patient is experiencing elevated symptoms of stress or pain (>7 out of 10), the platform flags it for the care team. This communication pathway was designed based on patient feedback to reduce frequency of calls to only when necessary.

User-testing with their community advisory board and focus groups informed two product features to address digital inequity. One, the whole intervention is loaded onto the device itself and can be used without broadband. Two, patients receive the tablet in-person with training on how to use it—better supporting patients with low digital literacy. Fundamental to the design of the intervention is the personification of the device and the 16 unique, empathetic responses to patient symptoms that provide a personal, non-robotic user experience.

The impact:

Patients and providers report high acceptability of the tablet (>68%) and strong adherence to daily log-ins by industry standards (49% or more). Patients report liking the interventions offered 83% of the time and early feedback suggests this intervention has a positive effect on common symptoms like fatigue. 75% of patients would recommend the intervention to a friend and many patients have responded positively to the platform’s personification and empathetic responses, even referring to the platform as “she.” Additionally, clinicians report high satisfaction with Nurse AMIE’s patient care pathways.

Digital care coach connects patients with support services to address patients holistic care needs

The impetus: Leaders at Jasper Health witnessed the stress and anxiety cancer patients and their caregivers feel when navigating the high treatment costs and complexities of cancer care. They also noticed that the psychosocial needs of cancer patients’ sometimes fly under the radar during care visits. The team believed that if patients’ psychosocial needs are not met, the patients’ body is not able to fully function and achieve optimal healing. Jasper Health wanted to develop a digital solution that focuses on addressing barriers to equitable cancer care, such as systemic racism, lack of trust, and disparities around access and cost of care.

The innovation:

Jasper Health created a no- to low-cost digital, intelligent platform to provide in-between visit support to cancer patients using chat, telemedicine, and human coaching. Each patient or caregiver is assigned a care coach to uncover and address their psychosocial needs, sleep, nutrition, physical activity, and financial needs. For example, Jasper Health connected with a stage 2 breast cancer patient who understood her treatment plan but faced significant social barriers to engage with her treatment, including homelessness, social isolation, and a lack of understanding of her health benefits. After using Jasper’s services, the patient is no longer homeless and feels more engaged with her treatment.

Key to the design of the platform is empathetic, personalized care with a human touch to better engage patients. The platform adapts to the cultural and language preferences of its users by allowing users to opt for call, text, app-based communication, and multilingual translation. Jasper Health found text messaging to be the best access point to reach patients at the right time.

The impact: Jasper serves over 13,500 members on their platform. Platform outcomes include: 68% of members report having less stress and anxiety; 78% of members report better medication adherence; and 93% of members find it easier to track appointments. Currently, the platform has an NPS of 99 and average patient retention of five months.

No cost, on-site farmers markets to advance nutrition security

The impetus: Leaders at Intermountain Healthcare’s Oncology Program saw nutritious food as critical to cancer prevention, healing, and holistic recovery (including reducing patient side effects, malnutrition, and fatigue). After reviewing the literature and gathering anecdotal feedback, they identified access, cost, and transportation as three core barriers limiting cancer patients’ access to healthy food.

The innovation: To address this challenge, Intermountain partnered with a local non-profit, Green Urban Lunchbox, to deliver onsite farmers markets at cancer care locations at no cost to patients and their loved ones using funding from their hospital foundations. Over time, the team added on-site registered dieticians to deliver credible, real-time nutrition education to patients, including meal prep guidance and recipes for the dietary changes that come with cancer treatment. Each market provided 150-300 pounds of produce to 30-50 patients at a total cost of $300-700.

The impact: The program has scaled from just two markets at one location to 42 markets across four locations in two years. This initiative saves each patient money they would have otherwise spend on food. By asserting the health system’s role in advancing nutrition security, Intermountain helps patients understand that nutrition is part of the treatment plan. Intermountain has seen these farmers markets empower patients to feel in control of their body at a time when they often feel a loss of control. Additionally, the markets are a space for community building among cancer patients, caregivers, providers, and the broader community.

To expand this work, Intermountain Community Health convened a stakeholder group to develop, implement, and evaluate a systematic approach for food insecurity screening and intervention initiatives. The team through Castell (an Intermountain Healthcare company) engaged a social risk data vendor whose analysis identified nutrition security as an area of highest impact and greatest ease for developing an intervention. Leaders are now leveraging predictive analytics for proactive outreach and data to expand their evaluation measures and connecting with community partners who are experts in nutrition security. Intermountain is also engaging patient experience experts and advocates to understand the right messaging and delivery mechanisms for this work.

Cross-industry initiatives to alleviate screening disparities in the wake of Covid-19

The impetus: The American Cancer Society (ACS) along with industry stakeholders recognized that the Covid-19 pandemic was having a detrimental impact on cancer screening, compounding longstanding inequities in cancer care for communities of color, the LGBTQ community, and rural communities. A collective, national response was required to mobilize the industry and minimize the negative effects of the Covid-19 pandemic on cancer care.

The innovation: ACS launched the Get Screened Initiative, a multi-faceted, multi-sector, nationwide program, to spotlight and alleviate barriers to care in the wake of the pandemic. The National Consortium was one of the many building blocks of the Get Screened Initiative, alongside public awareness, research, policy, health system screening interventions, and state and coalition leadership. The consortium engaged 829 participants to identify ten critical barriers in cancer screening. The issue-focused, time-bound partnership conducted consensus-building activities with participants to move beyond the status quo and develop nine recommendations to improve cancer outcomes nationwide.

Critical to the success of engaging cross-sector stakeholders was the use of three public forums that were broadcasted virtually to increase access and engagement of participants. The Get Screened Initiative was shaped by ACS’ health equity principles that center on the belief that all people should have a fair and just opportunity to prevent, find, treat, and survive cancer, and that different levels of resources and support are required for different groups.

The impact: ACS has seen success across every building block comprising the Get Screened Initiative.

• National Consortium for Cancer Screening and Care: 64% of members interviewed acknowledged the health equity efforts of the consortium and 93% of members felt more informed on strategies they could use to recover and advance cancer screening during the Covid-19 pandemic.
• Health System Screening Interventions: 87% of health systems involved increased their screening rates in at least one area and 44% of the patient population served by these health systems identified as racially and ethnically diverse.
• Public Awareness Campaign: ACS engaged the Hispanic Communications Network to implement two, three-week screening awareness campaigns, which garnered 12 million impressions on content posted.
• Research: The research arm of the initiative released 20+ cancer and pandemic-related publications in 2021 to show how Covid-19 affected cancer prevention, screening rates, treatment, and outcomes amongst underrepresented groups.