Site Editor
Soo Park, MD
Soo Park, MD
According to recent studies, advocacy organizations and patient navigation services help facilitate high-quality cancer care for patients, which can lead to better outcomes.1 By addressing patients’ experiences during their cancer treatment and beyond, educational programming and support services can improve the quality of life for those undergoing treatment and beyond.2 Patient advocacy organizations exist to aid these populations and are primarily defined as those with missions to generate positive impacts supporting a cause. Many of these nonprofit advocacy organizations are formed by concerned individuals who desire to take productive action that will help reduce the incidence of and suffering related to their disease.
Health advocacy can be a force to reduce disparities or fill the gaps in cancer care where inequities exist between institutions and patients’ experiences. Some institutions are understaffed and suffer poor interdepartmental communication, may be low-volume cancer treatment centers, or may not have all the components necessary to implement patient services fully. In these instances, advocacy organizations can help enhance patients’ experience through their cancer treatment journey.
A recent study identified two significant barriers that may prevent the use of resources provided by complementary advocacy organizations for patients diagnosed with cancer: lack of knowledge and limited health-care provider guidance.3 Patients likewise suggested that if accessing resources was encouraged from the medical side, then it would be taken seriously, because clinicians serve as trusted sources of information.3 Clear signposting with literature promoting resources at clinical sites is a means for overcoming these barriers.
AIM at Skin Cancer and Filling the Gaps
Nonprofit skin cancer organizations exist to fill in gaps where institutions may need assistance. AIM at Skin Cancer is an organization that was founded to address the needs of caregivers, families, and patients. This nonprofit started after its parent organization, the AIM at Melanoma Foundation, had operated for several years. There was an obvious unmet need to provide comprehensive and accurate resources to the skin cancer community. For example, one of the most important resources offered by AIM at Skin Cancer is its Ask a Skin Cancer Nurse program. This free service allows patients and caregivers to confidentially ask questions of a nurse who has been treating skin cancer for 30 years. Although diagnosis and treatment topics are not appropriate for this setting, the nurse can help patients with suggestions for side effect management and supportive education. For example, the AIM at Skin Cancer nurse can answer questions about prevention, early detection, and disease understanding in these one-on-one conversations. The nurse also has the opportunity to stress the importance of skin checks, routine screening, and sun-safety behaviors.
Medical Education
Improving disease awareness and fostering increased health literacy for patients are major goals that nonprofits can help realize. Caregivers and patients need access to free educational materials about their disease, strategies for treatment, and guidance for their journey that are prepared for the layperson and regularly updated, and nonprofits can provide these materials. Patients, advocacy groups, health-care practitioners, and specialists also cited access to information about rare cancers, including skin and eye tumors, as a necessity.4 Again, nonprofit advocacy organizations are particularly poised to help with this information, as they are often founded to advocate for a specific cancer, including rare cancers.
AIM at Skin Cancer offers symposia, webinars, and videos for those interested in understanding more about skin cancer. At the live-streamed symposia, experts provide information on topics such as emerging treatments and side-effect management. Each symposium offers an abundance of helpful information for patients, enhancing patients’ health literacy. Once the live symposia and webinars are completed, they are archived as on-demand videos for patients to watch at their leisure.
Language and communication barriers can present challenges to health literacy. AIM at Skin Cancer collaborates with advocacy groups in Australia, Canada, France, Germany, Israel, and Italy. Patient education resources and videos for health-care provider treatment management are provided in native languages for patients and practitioners, respectively. This program is part of AIM’s international strategy to raise awareness and improve treatment across the globe while breaking down communication barriers.
For some rare cancers, independent practice guidelines do not exist yet. For other cancers, informational materials may not be routinely updated because of a lack of research on the disease and limited funding. In other circumstances, particularly for patients with rare cancers such as rare skin and eye tumors, delays in oncology care and unequal treatment quality negatively impact survival.4 Advocacy organizations can help these situations by documenting what is known about the disease, raising awareness at the congressional level, and helping to attain funding.
Other Resources: Clinical Trials and Finances
Communicating the availability of clinical trials enrolling at different cancer centers is essential for advocacy organizations to enhance care options for patients. Access to innovative diagnostic tools, therapeutic protocols, and new treatments varies widely across cancer centers and locations. Patients cannot be expected to keep up with new drug or medical device approvals and to read abundant literature on up-and-coming treatment options, so the advocacy organization’s role here is particularly important.
Patients repeatedly ask questions about clinical trials, further stressing the importance of providing information about them. AIM at Skin Cancer offers a section on the website about clinical trials, including what they are and how to find one. The section also offers patients and their families help with finding a clinical trial through Carebox Connect, a digital platform that matches clinical trials with patients.
In addition to logistical challenges, financial challenges are often present when accessing cancer care and survivorship services. A recent study reported a high level of coverage denials for maintenance immunotherapy (41.7%) among patients with cancer. Additional denials occurred for supportive care and symptom management of cancer survivors, which included fatigue assessment, dental evaluation, physical therapy, and mental health services.5 Of note, approximately 9% of cancer survivors receive cancer rehabilitation services, even though the vast majority of survivors report needing such services.6 This small percentage likely reflects a combination of logistical challenges, financial limitations, and information gaps in survivorship care. As the number of long-term cancer survivors continues to grow, rehabilitation services are an up-and-coming area in which advocacy organizations and health-care providers can fill gaps in continued care.
Without financial advocacy, patients with cancer can suffer financial hardships and early mortality.7 However, financial advocacy extends well beyond the immediate patients diagnosed with cancer and their families. In part, studies linked health-care provider burnout to dealing with insurance coverage denials and prior authorization requirements in care.5,8 Payment stressors also burden the economic health of the institution where care was performed and the overall system’s viability. Among the financial advocacy resources provided by AIM at Melanoma Foundation, which is the parent organization of AIM at Skin Cancer, is a podcast about financial toxicity that discusses the role of navigators to help patients.
Conclusions
Where gaps exist in cancer care, for whatever reason, advocacy organizations are ready to fill them. The biggest hurdles to aiding patients during their care journey with additional resources are lack of knowledge and limited health-care provider guidance. Both hurdles are addressable with clinician knowledge about free resources provided through nonprofit organizations, signposting to advertise resources to patients, and literature available at clinical sites. Reaching out and asking for help is challenging but can be rewarding. The importance of overcoming hurdles to support would positively impact the quality of life for those living with cancer and cancer survivors.
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