December 10, 2024
Author: Carol Wang, Ph.D, Director of Clinical Research, We Are Here
A cancer diagnosis brings an immediate need for support, but navigating the extensive landscape of available resources can be overwhelming for patients and caregivers. With thousands of cancer-related organizations in the United States, each with its own focus, the sheer volume of options often leads to confusion rather than relief. This is particularly significant when considering the pursuit of equity in cancer care. In 1990, Dr. Harold Freeman developed the first cancer patient navigation program to expand access to cancer screening services and follow-up care for African American women, leading to improved survival rates for women with breast cancer1. The Livestrong Foundation proceeded to launch a (then) novel platform, full call center, and in person meetings based on this work. Patient Navigation is thus rooted in health equity, emphasizing the importance of being sensitive and responsive to the barriers faced by all cancer patients, especially those from underserved communities. The goal of cancer-related organizations is to provide support throughout the cancer experience. However, despite their critical role, the fragmented and extensive nature of available services can overwhelm those already struggling with the physical, emotional, and financial challenges of cancer.
The Proliferation of Cancer-Related Organizations
The increasing incidence of cancer has led to a rise in nonprofit organizations dedicated to various aspects of the disease, from financial aid to emotional support2. While this growth reflects a strong commitment to aiding cancer patients, it also results in a complex support system that patients must navigate independently making it difficult for them to access the appropriate resources in a timely manner, exacerbating the challenges that come with a cancer diagnosis.
The Patient’s Perspective: Overwhelmed by Choices
Patients often experience information overload when seeking support. A study by Kline et al. (2018)3 found that many patients face decision paralysis when presented with too many options for support services, leading to delays in accessing critical resources. This paralysis can have serious consequences including higher rates of emergency department visits and hospitalizations, as patients may miss out on timely and necessary support, negatively affecting their treatment outcomes including symptom management and survival.
Patients may also need to engage with multiple organizations to address different aspects of their care, such as financial assistance, transportation, or counseling4. The time and energy required to navigate these systems can be overwhelming, especially for those already dealing with the physical and emotional toll of cancer.
The current landscape of cancer-related nonprofits is highly fragmented, with many organizations focusing on narrow areas of support. While specialization can provide targeted assistance, it often forces patients to piece together a patchwork of services to meet their needs. This lack of coordination and piecemeal solutions can lead to inefficiencies and gaps in care, ultimately reducing the effectiveness of the support system4.
At We Are Here, we have connected cancer patients and their families to over $1 million dollars in grants and free services offered by cancer non-profits. However, in a survey we conducted among a random sample of 45 cancer caregivers while participating in AARP’s AgeTech Collaborative, we found that non-profits were reported to be the least helpful in providing support. This discrepancy between tangible assistance provided and perceived effectiveness of these organizations highlights a gap between the services offered and how they are experienced or communicated to patients and caregivers. We Are Here aims to alleviate the challenges of navigating through these organizations to ensure that patients and caregivers feel supported in real-time.
The Need for an Integrated Patient Navigation Platform
To address these challenges, there is a pressing need for an integrated patient navigation platform that can efficiently aggregate best in class resources across the country and seamlessly connect them to patients and their circle of support.
In a survey we conducted while participating in AARP’s AgeTech Collaborative, 53% of cancer caregivers and only 9% of cancer patients reported having worked with a patient navigator.
Although some larger cancer organizations offer resource navigation services, these are often limited and may not cover the full range of available resources2. At We Are Here, we are building our AI-driven platform to tailor personalized resource recommendations to cancer patients and caregivers, improving the patient experience. We streamline the process of connecting patients with the most appropriate support services by analyzing their specific needs and circumstances and connecting those patients directly to the resources.
Patient user testimonial:
“Thank you again for sharing all these resources. I shared your website with two other friends going through treatment as this has been by far the most helpful site I’ve come across. I had spent hours in the hospital googling resources and made a booklet for others. There’s a lot out there but navigating it can be tiring. I appreciate you and your help. – Stephanie”
The proliferation of cancer-related organizations presents significant challenges for patients trying to navigate this vast and fragmented landscape. The overwhelming number of options can lead to decision paralysis, making it difficult for patients to access the support they need. To improve the patient experience and ensure timely access to necessary resources, there is a critical need for an integrated, patient-centered navigation platform. We Are Here is building this platform and directly connecting patients to cancer resources and navigators when desired. As the healthcare landscape evolves, prioritizing the patient experience in accessing high-quality personalized resources is essential for improving health outcomes and quality of life.
About The Author:
Dr. Wang is an accomplished social and health research scientist whose work focuses on community-based participatory methods and patient-centered outcomes. She earned her PhD from the University of Houston, where she was a Susan G. Komen Research Fellow at the University of Texas, MD Anderson Cancer Center, and completed a postdoctoral fellowship at MD Anderson through the CPRIT cancer prevention research training program. Her work has been funded by the American Association for Cancer Research, National Cancer Institute, American Psychological Association, and Susan G. Komen Foundation.
References
1Freeman, H. P., & Rodriguez, R. L. (2011). History and principles of patient navigation. Cancer, 117(15 Suppl), 3539–3542. https://doi.org/10.1002/cncr.26262
2American Cancer Society. (2022). Cancer Facts & Figures 2022. https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2022.html
3Kline, R. M., Arora, N. K., Bradley, C. J., & Graves, D. L. (2018). Patient navigation in cancer: The business case to support clinical services. Journal of Cancer Education, 33(5), 1012-1019.
4Chan, R. J., Milch, V. E., Crawford-Williams, F., Agbejule, O. A., Joseph, R., Johal, J., Dick, N., Wallen, M. P., Ratcliffe, J., Agarwal, A., Nekhlyudov, L., Tieu, M., Al-Momani, M., Turnbull, S., Sathiaraj, R., Keefe, D., & Hart, N. H. (2023). Patient navigation across the cancer care continuum: An overview of systematic reviews and emerging literature. CA: Cancer Journal for Clinicians, 73(6), 565–589. https://doi.org/10.3322/caac.21788