Making a ‘Rapid-Learning System’ Work for Cancer Care

2011 ◽  
Vol 33 (10) ◽  
pp. 81-84
Author(s):  
Daniel M. Keller
2010 ◽  
Vol 28 (27) ◽  
pp. 4268-4274 ◽  
Author(s):  
Amy P. Abernethy ◽  
Lynn M. Etheredge ◽  
Patricia A. Ganz ◽  
Paul Wallace ◽  
Robert R. German ◽  
...  

Compelling public interest is propelling national efforts to advance the evidence base for cancer treatment and control measures and to transform the way in which evidence is aggregated and applied. Substantial investments in health information technology, comparative effectiveness research, health care quality and value, and personalized medicine support these efforts and have resulted in considerable progress to date. An emerging initiative, and one that integrates these converging approaches to improving health care, is “rapid-learning health care.” In this framework, routinely collected real-time clinical data drive the process of scientific discovery, which becomes a natural outgrowth of patient care. To better understand the state of the rapid-learning health care model and its potential implications for oncology, the National Cancer Policy Forum of the Institute of Medicine held a workshop entitled “A Foundation for Evidence-Driven Practice: A Rapid-Learning System for Cancer Care” in October 2009. Participants examined the elements of a rapid-learning system for cancer, including registries and databases, emerging information technology, patient-centered and -driven clinical decision support, patient engagement, culture change, clinical practice guidelines, point-of-care needs in clinical oncology, and federal policy issues and implications. This Special Article reviews the activities of the workshop and sets the stage to move from vision to action.


Author(s):  
Joseph O. Jacobson ◽  
Michael N. Neuss ◽  
Robert Hauser

Overview: Rising cancer care costs are no longer sustainable. Medical oncologists must focus on providing the maximum value to their patients; improving short-term, intermediate and long-term outcomes; and managing overall costs. Accurate measurement of outcomes and overall cost is essential to informing providers and institutions and in the quest for continuous improvement in value. The ASCO Quality Oncology Practice Initiative (QOPI) is an excellent tool for sampling processes of care in medical oncology practices. To achieve the larger goal of improving the value of cancer care, ASCO is investing in the development of a Rapid Learning System, which will leverage emerging information technologies to more accurately measure outcomes (including those reported by the patient) and costs, resulting in highly efficient, effective, and safe cancer care.


2012 ◽  
Vol 30 (1) ◽  
pp. 88-109 ◽  
Author(s):  
Nicholas J. Vogelzang ◽  
Steven I. Benowitz ◽  
Sylvia Adams ◽  
Carol Aghajanian ◽  
Susan Marina Chang ◽  
...  

A MESSAGE FROM ASCO'S PRESIDENT It has been forty years since President Richard Nixon signed the National Cancer Act of 1971, which many view as the nation's declaration of the “War on Cancer.” The bill has led to major investments in cancer research and significant increases in cancer survival. Today, two-thirds of patients survive at least five years after being diagnosed with cancer compared with just half of all diagnosed patients surviving five years after diagnosis in 1975. The research advances detailed in this year's Clinical Cancer Advances demonstrate that improvements in cancer screening, treatment, and prevention save and improve lives. But although much progress has been made, cancer remains one of the world's most serious health problems. In the United States, the disease is expected to become the nation's leading cause of death in the years ahead as our population ages. I believe we can accelerate the pace of progress, provided that everyone involved in cancer care works together to achieve this goal. It is this viewpoint that has shaped the theme for my presidential term: Collaborating to Conquer Cancer. In practice, this means that physicians and researchers must learn from every patient's experience, ensure greater collaboration between members of a patient's medical team, and involve more patients in the search for cures through clinical trials. Cancer advocates, insurers, and government agencies also have important roles to play. Today, we have an incredible opportunity to improve the quality of cancer care by drawing lessons from the real-world experiences of patients. The American Society of Clinical Oncology (ASCO) is taking the lead in this area, in part through innovative use of health information technology. In addition to our existing quality initiatives, ASCO is working with partners to develop a comprehensive rapid-learning system for cancer care. When complete, this system will provide physicians with personalized, real-time information that can inform the care of every patient with cancer as well as connect patients with their entire medical teams. The rapid learning system will form a continuous cycle of learning: securely capturing data from every patient at the point of care, drawing on evidence-based guidelines, and evaluating quality of care against those standards and the outcomes of other patients. Clinical trials are another area in which collaboration is critical. Increasing clinical trial participation will require commitment across the cancer community from physicians, patients, insurers, hospitals, and industry. A 2010 report by the Institute of Medicine described challenges to participation in trials by both physicians and patients and provided recommendations for revitalizing clinical trials conducted through the National Cancer Institute's Cooperative Group Program. ASCO has pledged its support for the full implementation of these recommendations. More broadly, ASCO recently outlined a bold vision for translational and clinical cancer research for the next decade and made recommendations to achieve that vision. Accelerating Progress Against Cancer: ASCO's Blueprint for Transforming Clinical and Translational Research, released in November, calls for a research system that takes full advantage of today's scientific and technologic opportunities and sets a high-level agenda for policy makers, regulators, and advocates. Cancer research has transformed cancer care in the past forty years, and this year's Clinical Cancer Advances illustrates how far we have come in the past year alone. We now have a tremendous opportunity to use today's knowledge and collaborate across all facets of cancer care to conquer this deadly disease. Michael P. Link, MD President American Society of Clinical Oncology


2017 ◽  
Vol 13 (3) ◽  
pp. e163-e175 ◽  
Author(s):  
Rochelle D. Jones ◽  
Aaron N. Sabolch ◽  
Erin Aakhus ◽  
Rebecca A. Spence ◽  
Angela R. Bradbury ◽  
...  

Introduction: A rapid learning system (RLS) of health care harnesses data generated from routine patient care to create a virtuous cycle of data collection and analysis for quality improvement and research. The success of such systems depends on understanding patient perspectives regarding the ethical issues that arise from the ongoing implementation of this transformative concept. Methods: An interview guide was designed to evaluate patient perspectives to inform the ethical implementation of an oncology RLS. A purposively selected, diverse sample of 32 patients with cancer was recruited from two institutions to participate in semistructured, in-depth interviews for formal qualitative analysis. Results: The extent to which respondents expressed discomfort with more permissive system features (less formal notification/consent, broader uses/users, inclusion of sensitive data) reflected their trust, which in turn seemed to vary by sociodemographic features. It was also influenced by their familiarity with technology and their attitudes and beliefs regarding privacy and the use of electronic medical records more generally. Distrust of insurers and the pharmaceutical industry led subjects to desire greater oversight and restriction of these potential users of the system. Subjects were most comfortable when doctors were the primary users, engaged patients directly in the notification and consent discussion, and oversaw the system. Conclusion: Those actively developing RLSs should recognize the critical importance of trust and the key role that doctors will need to play in order for such systems to be successful and to ensure that their implementation is ethically palatable to the patients whose data are being included.


2013 ◽  
Vol 103 ◽  
pp. 19-25 ◽  
Author(s):  
Carolina Gonzalez ◽  
Cecilia Kramar ◽  
Fernando Garagoli ◽  
Janine I. Rossato ◽  
Noelia Weisstaub ◽  
...  

2017 ◽  
Vol 13 (3) ◽  
pp. e176-e184 ◽  
Author(s):  
Rachel M. Mayo ◽  
Julie F. Summey ◽  
Joel E. Williams ◽  
Rebecca A. Spence ◽  
Shally Kim ◽  
...  

Introduction: ASCO is actively developing CancerLinQ (CLQ), a rapid learning system for oncology care. The purpose of this study was to explore providers’ opinions and concerns related to implementation of CLQ, including ethical issues. Methods: Twenty key informant oncologists were recruited for individual in-depth interviews through ASCO contacts, purposively selected to represent a wide variety of cancer specialties as well as different levels of familiarity with CLQ (familiar v unfamiliar). Qualitative data analysis was completed by a three-member team using an inductive narrative approach. Themes were examined by participants familiar and unfamiliar with CLQ, and quotations exemplifying each theme are provided. Results: Participants’ opinions centered on three main themes: (1) general attitudes regarding learning health care systems, (2) optimal approach to patient consent, and (3) appropriateness of data use. There was clear support for the use of big data in clinical decision making for patients and in research. Unfamiliar participants expressed concerns regarding system protections against patient identification, and both familiar and unfamiliar participants discussed the dilemma of including genetic information. Respondents were in agreement with notifying patients early; however, there was debate over whether patients should opt in or opt out. Overall, there was great concern regarding sharing data with drug companies and insurers. Conclusion: Understanding oncologists’ perspectives regarding the ethical implications of CLQ implementation is critical to its success. More research is needed on the impact of rapid learning systems on providers, patients, health systems, and the ultimate effect on cancer care.


Medical Care ◽  
2010 ◽  
Vol 48 ◽  
pp. S32-S38 ◽  
Author(s):  
Amy P. Abernethy ◽  
Asif Ahmad ◽  
S. Yousuf Zafar ◽  
Jane L. Wheeler ◽  
Jennifer Barsky Reese ◽  
...  

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