Background: National Cancer Institute (NCI) and nonprofit organization (NPO) funding have driven recent advancements in oncology through research and advocacy. However, some cancers may be underfunded relative to their burden. This study examined the alignment of cancer burden by histology with NCI and NPO funding for each histology. Methods: The GuideStar database was used to find all cancer NPOs with >$5 million (M) in annual revenue (AR) using NTEE codes and 165 cancer-related search terms. Care delivery NPOs were excluded. NPOs were classified by the histology they support. AR was obtained from IRS Form 990s for each NPO. NCI funding allocation across histologies was obtained from the NCI Funded Research Portfolio data. Total funding for each histology was calculated by adding the NCI funding and the ARs for all NPOs in that histology. Cancer burden based on annual incidence, deaths, and person-years of life lost (PYLL) was obtained from SEER data. Comparison of total NCI and NPO funding with incidence, deaths, and PYLL of each histology was done using descriptive statistics and Pearson correlation coefficients. Results: 119 NPOs with total AR of $6 billion were included. 59 (50%) were histology agnostic and accounted for $4.6 billion (76.8%) of total AR. Cancers with the most NPOs were breast (13, 11%), pediatric (13, 11%), leukemia (4, 3.4%) and lung (4, 3.4%). There were no NPOs with AR >$5 M for esophageal, gastric, kidney, or bladder cancers. Cancers with the most combined NCI and NPO funding were breast ($1 billion), leukemia ($448 M), lung ($348 M), and prostate ($303 M). The ratios of combined NCI and NPO funding vs incidence, mortality, and PYLL are shown in Table 1. Cancers with the best funding vs incidence were leukemia, ovarian, and breast. Cancers with the best funding vs deaths were breast, leukemia, and melanoma. Cancers with the best funding vs PYLL were breast, leukemia, and prostate. Colon, liver, lung, and bladder cancers were poorly funded in all 3 metrics. The correlation coefficients between funding and incidence, deaths, and PYLL were 0.74, 0.34, and 0.36, respectively. Conclusions: There is substantial support for cancer research and advocacy in both the government and nonprofit sectors. While funding by cancer type was moderately proportional to incidence, it was poorly correlated with deaths and PYLL. There is significant need to increase awareness and support for many under-supported, but common and highly lethal cancers.
Suneel D. Kamath, Sheetal M. Kircher and Al B. Benson III
Karen E. Kinahan, Sheetal Kircher, Jessica Altman, Alfred Rademaker, John M. Salsman, Aarati Didwania, Bridget O'Brien, Alpa C. Patel and Stacy D. Sanford
Background: The “shared-care model” for patients with cancer involves care coordination between primary care providers (PCPs) and oncologists, with the goal of optimizing survivorship care. However, a high proportion of adolescent and young adult (AYA) cancer survivors do not have a PCP. Study objectives were to increase the percentage of AYAs with a PCP documented in the electronic medical record (EMR) via the use of a best practice advisory (BPA) or “stopgap” intervention; to increase communication between providers by the number of routed clinic notes; and to assess oncology providers' attitudes/beliefs about the model and intervention. Methods: Data were collected for the 6 months before implementation of the BPA to determine the percentage of AYAs with a PCP and the number of notes routed to providers (time point 1 [T1]). The same data were collected at time point 2 (T2) after the BPA had been implemented for 6 months. Oncology providers participated in an education video module and an online survey at T1 and a survey at T2. Results: At T1, 47.1% of 756 AYAs had a documented PCP in the EMR. At T2, the percentage increased to 55.1% (P<.002). The number of routed notes did not change significantly from T1 to T2. Providers that completed the intervention survey agreed/strongly agreed that the shared-care model is a desirable model of care (T1 = 86%; T2 = 93%) and that a BPA is useful for facilitating PCP referrals (T1 = 76%; T2 = 39%). Conclusions: This BPA is feasible for increasing the percentage of AYAs with a PCP documented in the EMR and could potentially lead to increased PCP referral and communication among providers for the benefit of long-term survivorship care. Providers generally agree with the shared-care model; however, the BPA implementation requires modification.