Many factors influence cancer patients' and caregivers' decisions about discussing Internet information with their doctors. The coherence of the reasons across the communities in this study and in other studies suggests that this typology of reasons is both thorough and valid.
This article explores the effect of doctor–patient communication about cancer-related Internet information on self-reported outcomes. Two hundred and thirty cancer patients and caregivers completed an online survey regarding their experiences searching for and discussing with their doctors cancer-related Internet information. Participants who assertively introduced the Internet information in a consultation were more likely to have their doctor agree with the information. When doctors showed interest and involvement and took the information seriously, participants were less likely to report a desire to change the doctor's response. Taking the information seriously was also associated with greater satisfaction. This preliminary evidence that the doctor's response is associated with patient outcomes indicates the potential for improving patient-centered communication. In an effort to maximize patient-centered communication, doctors should be encouraged to take their patients and the information they present seriously, as well as show their patients that they are interested and involved.
In recent years, high health care costs and the financial burden of cancer care have received increased attention. In response to the financial burden of cancer care, patients may jeopardize their health outcomes by not properly adhering to prescribed therapies or even forgoing and delaying care in an effort to defray costs. In addition, the financial burden experienced by patients with cancer may negatively impact clinical outcomes, such as quality of life, physical and psychological symptoms, and potentially, even survival. Notably, in the current era of targeted treatment and immunotherapies for patients with cancer, the rising costs of cancer continue to remain at the forefront of patient concerns. Therefore, a critical need exists to determine how best to assist patients with the cost burden of cancer diagnosis and treatment.
Two major trends that have been affecting the provision of oncology care in the United States are a shift from volume-based to value-based care and a push toward patient-centered healthcare. However, these two trends are not always completely aligned with each other. Value-based payment models, including clinical pathways, are one strategy being implemented by oncology stakeholders to help encourage the uptake of value-based oncology care. If structured with the patient in mind, they can improve quality of care for patients with cancer, decrease inappropriate care while enabling appropriate personalization of care, and constrain rising prices by demanding a stronger link between cost and value. If not structured appropriately, they can limit patient choice, impede access to innovative treatments, and encourage one-size-fits-all oncology care. .
Development of medicines and vaccines for COVID-19 amplified the need for all US communities to participate in research. This recognition spurred interest in adopting inclusive and equitable research practices across industry and the clinical research ecosystem in general. Between 2018-2021, regulatory bodies, professional organizations, and working groups issued policy and/or recommendations outlining measures that support the conduct of inclusive and equitable clinical trials. We applied previously published multi-themed strategies, multi-stakeholder recommendations, and calls to action by surveying industry to document baseline practices towards equitable clinical trial representation in the US. Research Question: What strategies are industry leaders deploying to increase diversity in clinical trials? Methods: Using a 4-staged approach, we first identified 48 success factors sourced from 12 documents. This analysis included previously documented measures that are both inclusive of diverse populations as well as practices that facilitate insights from diverse communities. Second, a survey tool was developed that organized the individual success factors into 6 categories with one open-ended question on ecosystem changes; survey measures and 4 choices for each factor were “Actively implementing,” “Recommended to be implemented,” “No plans to implement,” and “No answer.” Third, the survey was administered between April 10-30, 2021, to 12 pharmaceutical companies all having a proven external commitment to health equity in oncology and all are represented on the 2021 1Q Biopharma top 25 by Market Cap report. Fourth, responses were anonymized and aggregated; results were provided to respondents. Results: The response rate was 67% (8/12). Responders indicated success factors across two major implementation categories as follows: “actively implemented” (51%); “recommended/planned for implementation” (44%). No responders added any additional success factors via free text. Being “actively implemented” was highest for the 3 categories “site selection” (78%), “general capabilities” (72%), “leadership” (53%). “Recommended/planned for implementation” was highest for the 3 categories “participant focused” (50%), “other factors” (50%), “racial and ethnic minority group data (REMG)” (48%). Conclusions: Pharmaceutical companies reported active implementation of success factors sourced from public documents across all categories. As an example, stakeholders have generally considered thoughtful site selection an important measure to enroll diverse representation in clinical trials as it may mitigate access barriers to participation. In the site selection category, the survey reported 7/8 companies were actively implementing three measures and 5/8 were actively implementing two measures. An approach and analysis should be considered for expansion to more biotech companies and include a process devised for annual fielding and transparently reporting results. Citation Format: Jeanne M. Regnante, Lola Fashoyin-Aje, Ellen Miller Sonet, Quita Highsmith, MBA, Melissa Gonzales, PhD, Sandra Amaro, MBA, Amy Davis, Mary Stober Murray, Maimah Karmo, Barbara Bierer. The pharmaceutical industry in action: 2021 clinical research diversity and inclusion survey [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-084.
Disparities in access to cancer care and treatment outcomes among racial, ethnic and underserved populations have been observed for decades. Despite a plethora of national and local initiatives aimed at addressing these disparities, progress to date has been limited. Guided by the domains of the cancer care continuum (CCC) established by the IOM/NASEM [1] the Diverse Cancer Communities Working Group [2] (CWG) will deliver a framework with domains, processes and activities which when disseminated and implemented in the US, will contribute in an impactful way to addressing cancer care disparities. To achieve our goal, we utilized methodology similar to that used to identify best practices in recruiting diverse patients into cancer clinical trials.[3] We conducted an environmental scan to identify strategies and associated experts who successfully provided community and/or patient-centric, IOM defined domain standards in our population of interest. The environmental scan was conducted between March and September 2018, resulting in the identification of 84 unique experts and 44 unique patient organizations. The identified experts had documented processes and best practices along the six CCC domains as follows: Prevention & Risk Reduction (29%); Screening (30%); Diagnosis (11%); Treatment (8%); Survivorship (18%); and End-of-Life (5%). Of the 84 participants, 26% are experts in all six domains, 36% are experts in multiple domains, and 14% are also experts in Patient Navigator Research Programs. Drawing from our environmental scan, the CWG engaged the experts and advocates to develop the foundation for a theoretical underpinning of an evidence-based, practical continuum of care framework. Highest cross-cancer-continuum areas of impact included 1) patient navigation which addresses barriers to enable patients to progress successfully along the cancer continuum of care, 2) excellence in community engagement, a necessary mandate to build trust in among minority and underserved populations, and 3) implementation of health care system changes based on real-world examples. Additionally, experts focused on opportunities to close gaps between the CCC domains with specific emphasis on screening, diagnosis, treatment, and survivorship, with the understanding that health care system change is often effectively sustained by long-term policy implementation that ultimately increases access, utilization and standardization across the continuum. This adapted framework is intended to guide researchers, health care leaders and policy leaders to promote health equity in cancer outcomes. References: [1] Institute of Medicine 2013. Delivering High-Quality Cancer Care; Charting a New Course for a System in Crisis. Washington, DC: The National Academies Press. https://doi.org/10.17226/18359; [2] URL: http://shcllc.info/cancer-working-group/ [3] URL: http://ascopubs.org/doi/full/10.1200/JOP.18.00638 Citation Format: Jeanne M. Regnante, Karen Winkfield, MD, PhD, Ellen Sonet, JD, MBA, Evelyn Gonzalez, Karen M. Freund, MD, Simon Craddock Lee, PhD, Scarlett Lin Gomez, PhD, MPH, Nina Bickell, MD, Lynette Bonar, PhD, Michelle Vichnin, MD, Nicole Richie, PhD, Richardae Araojo, PharmD, Andrea Ferris, MBA, Thomas Farrington, Linda Fleisher, PhD, MPH, Carolyn Fang, PhD, Laura Lee Hall, PhD, Renee Nicolas, Shyrea Thompson, Marilyn Metcalf, PhD, Patti Fine Jewell, PhD, Marianne Gandee, Anna Forte, PhD, Elizabeth Franklin. PhD, Patti Doykos, PhD. Securing the cancer continuum of care model for racially and ethnically diverse and medically underserved populations [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr D080.
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