Patients as biomedical researchers.

Advancements in biomedical research are highly dependent on critical thinking and problem solving. When quality of life and life-saving interventions rely on biomedical discoveries, every perspective is valuable. Therefore, a key contributor to the progress of health-related research is missing when patient representation is deficient in the biomedical research workforce.

Development, Feasibility, and Small-Scale Implementation of a Web-Based Prognostic Tool-Surveillance, Epidemiology, and End Results Cancer Survival Calculator.

BACKGROUND: Population datasets and the Internet are playing an ever-growing role in the way cancer information is made available to providers, patients, and their caregivers. The Surveillance, Epidemiology, and End Results Cancer Survival Calculator (SEER*CSC) is a Web-based cancer prognostic tool that uses SEER data, a large population dataset, to provide physicians with highly valid, evidence-based prognostic estimates for increasing shared decision-making and improving patient-provider communication of complex health information. OBJECTIVE: The aim of this study was to develop, test, and implement SEER*CSC. METHODS: An iterative approach was used to develop the SEER*CSC. Based on input from cancer patient advocacy groups and physicians, an initial version of the tool was developed. Next, providers from 4 health care delivery systems were recruited to do formal usability testing of SEER*CSC. A revised version of SEER*CSC was then implemented in two health care delivery sites using a real-world clinical implementation approach, and usage data were collected. Post-implementation follow-up interviews were conducted with site champions. Finally, patients from two cancer advocacy groups participated in usability testing. RESULTS: Overall feedback of SEER*CSC from both providers and patients was positive, with providers noting that the tool was professional and reliable, and patients finding it to be informational and helpful to use when discussing their diagnosis with their provider. However, use during the small-scale implementation was low. Reasons for low usage included time to enter data, not having treatment options in the tool, and the tool not being incorporated into the electronic health record (EHR). Patients found the language in its current version to be too complex. CONCLUSIONS: The implementation and usability results showed that participants were enthusiastic about the use and features of SEER*CSC, but sustained implementation in a real-world clinical setting faced significant challenges. As a result of these findings, SEER*CSC is being redesigned with more accessible language for a public facing release. Meta-tools, which put different tools in context of each other, are needed to assist in understanding the strengths and limitations of various tools and their place in the clinical decision-making pathway. The continued development and eventual release of prognostic tools should include feedback from multidisciplinary health care teams, various stakeholder groups, patients, and caregivers.

Implementation science in cancer prevention and control: a decade of grant funding by the National Cancer Institute and future directions.

BACKGROUND: The National Cancer Institute (NCI) has supported implementation science for over a decade. We explore the application of implementation science across the cancer control continuum, including prevention, screening, treatment, and survivorship. METHODS: We reviewed funding trends of implementation science grants funded by the NCI between 2000 and 2012. We assessed study characteristics including cancer topic, position on the T2-T4 translational continuum, intended use of frameworks, study design, settings, methods, and replication and cost considerations. RESULTS: We identified 67 NCI grant awards having an implementation science focus. R01 was the most common mechanism, and the total number of all awards increased from four in 2003 to 15 in 2012. Prevention grants were most frequent (49.3%) and cancer treatment least common (4.5%). Diffusion of Innovations and Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) were the most widely reported frameworks, but it is unclear how implementation science models informed planned study measures. Most grants (69%) included mixed methods, and half reported replication and cost considerations (49.3%). CONCLUSIONS: Implementation science in cancer research is active and diverse but could be enhanced by greater focus on measures development, assessment of how conceptual frameworks and their constructs lead to improved dissemination and implementation outcomes, and harmonization of measures that are valid, reliable, and practical across multiple settings.

The Surveillance, Epidemiology, and End Results Cancer Survival Calculator SEER*CSC: validation in a managed care setting.

BACKGROUND: Nomograms for prostate and colorectal cancer are included in the Surveillance, Epidemiology, and End Results (SEER) Cancer Survival Calculator, under development by the National Cancer Institute. They are based on the National Cancer Institute's SEER data, coupled with Medicare data, to estimate the probabilities of surviving or dying from cancer or from other causes based on a set of patient and tumor characteristics. The nomograms provide estimates of survival that are specific to the characteristics of the tumor, age, race, gender, and the overall health of a patient. These nomograms have been internally validated using the SEER data. In this paper, we externally validate the nomograms using data from Kaiser Permanente Colorado. METHODS: The SEER Cancer Survival Calculator was externally validated using time-dependent area under the Receiver Operating Characteristic curve statistics and calibration plots for retrospective cohorts of 1102 prostate cancer and 990 colorectal cancer patients from Kaiser Permanente Colorado. RESULTS: The time-dependent area under the Receiver Operating Characteristic curve statistics were computed for one, three, five, seven, and 10 year(s) postdiagnosis for prostate and colorectal cancer and ranged from 0.77 to 0.89 for death from cancer and from 0.72 to 0.81 for death from other causes. The calibration plots indicated a very good fit of the model for death from cancer for colorectal cancer and for the higher risk group for prostate cancer. For the lower risk groups for prostate cancer (<10% chance of dying of prostate cancer in 10 years), the model predicted slightly worse prognosis than observed. Except for the lowest risk group for colorectal cancer, the models for death from other causes for both prostate and colorectal cancer predicted slightly worse prognosis than observed. CONCLUSIONS: The results of the external validation indicated that the colorectal and prostate cancer nomograms are reliable tools for physicians and patients to use to obtain information on prognosis and assist in establishing priorities for both treatment of the cancer and other conditions, particularly when a patient is elderly and/or has significant comorbidities. The slightly better than predicted risk of death from other causes in a health maintenance organization (HMO) setting may be due to an overall healthier population and the integrated management of disease relative to the overall population (as represented by SEER).

Health-care utilization by prognosis profile in a managed care setting: using the Surveillance, Epidemiology and End Results Cancer Survival Calculator SEER*CSC.

BACKGROUND: Accurate estimation of the probability of dying of cancer versus other causes is needed to inform goals of care for cancer patients. Further, prognosis may also influence health-care utilization. This paper describes health service utilization patterns of subgroups of prostate cancer and colorectal cancer (CRC) patients with different relative probabilities of dying of their cancer or other conditions. METHODS: A retrospective cohort of cancer patients from Kaiser Permanente Colorado were divided into three groups using the predicted probabilities of dying of cancer and other causes calculated by the nomograms in the National Cancer Institute Surveillance, Epidemiology and End Results Cancer Survival Calculator. Demographic, disease-related characteristics, and health service utilization patterns were described across subgroups. RESULTS: The cohort consisted of 2092 patients (1102 prostate cancer and 990 CRC). A new diagnosis of cancer increased utilization of cancer-related services with rates as high as 9.1/1000 person-days for prostate cancer and 36.2/1000 person-days for CRC. Little change was observed in the number of primary and other specialty care visits from prediagnosis to 1 and 2 years postdiagnosis. CONCLUSIONS: We found that although a new diagnosis of cancer increased utilization of cancer-related services for an extended time period, the timing of cancer diagnosis did not appear to affect other types of utilization. Future research should assess the reason for the lack of impact of cancer and unrelated comorbid conditions on utilization and whether desired outcomes of care were achieved.

The Cancer Survival Query System: making survival estimates from the Surveillance, Epidemiology, and End Results program more timely and relevant for recently diagnosed patients.

BACKGROUND: Population-based cancer registries that include patient follow-up generally provide information regarding net survival (ie, survival associated with the risk of dying of cancer in the absence of competing risks). However, registry data also can be used to calculate survival from cancer in the presence of competing risks, which is more clinically relevant. METHODS: Statistical methods were developed to predict the risk of death from cancer and other causes, as well as natural life expectancy if the patient did not have cancer based on a profile of prognostic factors including characteristics of the cancer, demographic factors, and comorbid conditions. The Surveillance, Epidemiology, and End Results (SEER) Program database was used to calculate the risk of dying of cancer. Because the risks of dying of cancer versus other causes are assumed to be independent conditional on the prognostic factors, a wide variety of independent data sources can be used to calculate the risk of death from other causes. Herein, the risk of death from other causes was estimated using SEER and Medicare claims data, and was matched to the closest fitting portion of the US life table to obtain a "health status-adjusted age." RESULTS: A nomogram was developed for prostate cancer as part of a Web-based Cancer Survival Query System that is targeted for use by physicians and patients to obtain information on a patient's prognosis. More nomograms currently are being developed. CONCLUSIONS: Nomograms of this type can be used as one tool to assist cancer physicians and their patients to better understand their prognosis and to weigh alternative treatment and palliative strategies.