Appendix A

Glossary

Access to care—the timely use of personal health services to achieve the best possible health outcomes (IOM, 1993)

Accountable care organization (ACO)—groups of clinicians that voluntarily assume responsibility for the care of a population of patients that share payer savings if they meet quality and cost performance benchmarks (RAND, 2011)

Accreditation—a process whereby a professional association or nongovernmental agency grants recognition to a school or health care institution for demonstrated ability to meet predetermined criteria for established standards (AHRQ, 2012a)

Adjuvant therapy—additional cancer treatment given after primary treatment to lower the risk that the cancer will return. Adjuvant therapy may include chemotherapy, radiation therapy, hormone therapy, targeted therapy, or biological therapy (NCI, 2012)

Advance care planning—making decisions about the care you would want to receive if you happen to become unable to speak for yourself, including consideration of what types of life-sustaining treatments align with your preferences, preparation of an advance directive, and preparation of a durable power of attorney (NHPCO, 2013)



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Appendix A Glossary Access to care—the timely use of personal health services to achieve the best possible health outcomes (IOM, 1993) Accountable care organization (ACO)—groups of clinicians that volun- tarily assume responsibility for the care of a population of patients that share payer savings if they meet quality and cost performance bench- marks (RAND, 2011) Accreditation—a process whereby a professional association or nongov- ernmental agency grants recognition to a school or health care institution for demonstrated ability to meet predetermined criteria for established standards (AHRQ, 2012a) Adjuvant therapy—additional cancer treatment given after primary treat- ment to lower the risk that the cancer will return. Adjuvant therapy may include chemotherapy, radiation therapy, hormone therapy, targeted therapy, or biological therapy (NCI, 2012) Advance care planning—making decisions about the care you would want to receive if you happen to become unable to speak for yourself, including consideration of what types of life-sustaining treatments align with your preferences, preparation of an advance directive, and prepara- tion of a durable power of attorney (NHPCO, 2013) 357

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358 DELIVERING HIGH-QUALITY CANCER CARE Advance directive—a formal legal document specifically authorized by state laws that allows patients to continue their personal autonomy and that provides instructions for care in case they become incapacitated and cannot make decisions (AHRQ, 2013b) Advanced cancer—cancer that has spread to other places in the body and usually cannot be cured or controlled with treatment (NCI, 2012) Ambulatory care—medical care received outside of a hospital setting, such as the use of doctors’ offices, home care, outpatient hospital clinics, and daycare facilities (IOM, 2005) Benefit—a positive or valued outcome of an action or event (IOM, 2011b) Biomarker—a characteristic that is objectively measured and evaluated as an indicator of normal biologic processes, pathogenic processes, or pharmacologic responses to an intervention (BDWG, 2001) Bundled payment—a single “bundled” payment, which may be shared by multiple clinicians in multiple care settings, is made for services deliv- ered during an episode of care related to a medical condition or procedure (RAND, 2011) Cancer—a general term for more than 100 diseases that are characterized by uncontrolled, abnormal growth of cells. Cancer cells can spread locally or through the bloodstream and lymphatic system to other parts of the body (IOM, 2005) Cancer care continuum—the trajectory from cancer prevention and risk reduction, through screening, diagnosis, treatment, survivorship, and end-of-life care (adapted from NCI, 2013a) Cancer care team—includes individuals with specialized training in on- cology, such as oncologists and oncology nurses, other specialists, and primary care clinicians, as well as family caregivers and direct care work- ers (see Chapter 4) Cancer core competencies—the tasks or functions that health care clini- cians should be able to perform throughout the cancer care continuum (adapted from Smith and Lichtveld, 2013) Care coordination—the act of ensuring that care is harmonized across all elements of the broader health care system (adapted from AHRQ, 2013a)

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APPENDIX A 359 Care plan—information about a patient’s diagnosis and prognosis, the planned path of care, and who is responsible for each portion of that care (adapted from IOM, 2011d) Caregivers—see family caregivers and direct care workers Chemotherapy—the treatment with drugs that kill cancer cells (NCI, 2012) Chronic illness—long-term health conditions that threaten well-being and function in an episodic, continuous, or progressive way over many years of life (IOM, 2012) Clinical decision support—a system that provides clinicians with person- specific information, intelligently filtered or presented at appropriate times, to enhance health and health care (ONC, 2013a) Clinical practice guidelines (CPGs)—statements that include recommen- dations intended to optimize patient care that are informed by a system- atic review of evidence and an assessment of the benefits and harms of alternative care options (IOM, 2011a) Clinical trial—a type of research study that tests how well new medical approaches work in people. These studies test new methods of screening, prevention, diagnosis, or treatment of a disease. Also called clinical study (NCI, 2012) Comorbidity—refers to the co-occurrence of two or more disorders or syndromes (not symptoms) in the same patient (IOM and NRC, 2005) Comparative effectiveness research (CER)—the generation and synthesis of evidence that compares the benefits and harms of alternative methods to prevent, diagnose, treat, and monitor a clinical condition or to improve the delivery of care. The purpose of CER is to assist consumers, clinicians, purchasers, and policy makers to make informed decisions that will im- prove health care at both the individual and the population level (IOM, 2009b) Conflict of interest—a set of circumstances that creates a risk that profes- sional judgment or actions regarding a primary interest will be unduly influenced by a secondary interest (IOM, 2009c)

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360 DELIVERING HIGH-QUALITY CANCER CARE Cost-effectiveness—a formal method for comparing the benefits of a medical intervention (measured in terms of clinical outcome or utility) with the costs of the medical intervention to determine which alternative provides the maximum aggregate health benefits for a given level of re- sources, or equivalently, which alternative provides a given level of health benefits at the lowest cost (Sloan, 1996) Coverage with evidence development (CED)—a policy tool in which payers agree to conditionally cover new medical technologies, provided that manufacturers conduct additional research to support more informed coverage decisions (CMTP, 2013) Decision aid—a tool that provides patients with evidence-based, objec- tive information on all treatment options for a given condition. Deci- sion aids present the risks and benefits of all options and help patients understand how likely it is that those benefits or harms will affect them. Decision aids can include written materials, Web-based tools, videos, and multimedia programs. Some decision aids are targeted at patients, and others are targeted for clinician use with patients (MedPAC, 2010) Demonstration project—a project, supported through a grant or a coop- erative agreement, generally to establish or demonstrate the feasibility of new methods or new types of services (NCI, 2013c) Diagnosis—the process of identifying a disease, such as cancer, from its signs and symptoms (NCI, 2012) Direct care workers—providers of paid hands-on care, supervision, and emotional support for patients. They are typically categorized as nurse aids or nursing assistants, home health aides, and personal and home care aides. They most often provide care in a patient’s home, a nursing home, or a hospital (IOM, 2008b) Electronic health record (EHR)—a real-time, patient-centered record that contains information about a patient’s medical history, diagnoses, medica- tions, immunization dates, allergies, radiology images, and lab and test results (ONC, 2013b) End-of-life care—a term used to describe the support and medical care given during the time surrounding death (NIA and NIH, 2010)

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APPENDIX A 361 Equity—providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socio- economic status (IOM, 2001) Evidence—information on which a decision or guidance is based. Evi- dence is obtained from a range of sources, including randomized con- trolled trials, observational studies, and the expert opinions of clinical professionals and/or patients (IOM, 2011b) Family caregivers—relatives, friends, or neighbors who provide assis- tance related to an underlying physical or mental disability but are un- paid for those services (IOM, 2008b) Harm—a hurtful or adverse outcome of an action or event, whether tem- porary or permanent (IOM, 2011b) Health care proxy—a document that allows the patient to designate a sur- rogate, a person who will make treatment decisions for the patient if the patient becomes too incapacitated to make such decisions (AHRQ, 2013b) Health information technology (IT)—a technical system of computers and software that operates in the context of a larger sociotechnical system; that is, a collection of hardware and software working in concert within an organization that includes people, processes, and technology (IOM, 2011c) Health literacy—the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health care decisions (IOM, 2004) Hospice care—the most intensive form of palliative care; a service deliv- ery system that provides palliative care for patients who have a limited life expectancy and require comprehensive biomedical, psychosocial, and spiritual support as they enter the terminal stage of an illness or condition. It also supports family members coping with the complex consequences of illness, disability, and aging as death nears. Hospice care further ad- dresses the bereavement needs of the family following the death of the patient (NQF, 2006) Incidence—the number of new cases of a disease diagnosed over a certain period of time (adapted from NCI, 2013b)

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362 DELIVERING HIGH-QUALITY CANCER CARE Late effects—side effects of cancer treatment that appear months or years after treatment has ended. Late effects include physical and mental prob- lems and second cancers (NCI, 2012) Learning health care information technology (IT) system—a health care system that uses advances in information technology to continuously and automatically collect and compile the evidence needed to deliver the best, most up-to-date personalized care for each patient from clinical practice, disease registries, clinical trials, and other information sources. That evidence is made available as rapidly as possible to users of a [learn- ing health care IT system], which include patients, physicians, academic institutions, hospitals, insurers, and public health agencies. A [learning health care IT system] ensures that this data-rich system learns routinely and iteratively by analyzing captured data, generating evidence, and implementing new insights into subsequent care (IOM, 2010 [adapted from Etheredge, 2007]) Metastasis—the spread of cancer from one part of the body to another (NCI, 2012) Morbidity—a disease or the incidence of disease within a population. Morbidity also refers to adverse effects caused by a treatment (NCI, 2012) Mortality—the state of being mortal (destined to die). Mortality also refers to the death rate, or the number of deaths in a certain group of people in a certain period of time. Mortality may be reported for people who have a certain disease, live in one area of the country, or who are of a certain gender, age, or ethnic group (NCI, 2012) Needs—a patient’s physical or emotional requirements (adapted from IOM, 2001, 2003) Observational study—research in which investigators observe the course of events (IOM, 2011b) Oncology—the study of cancer (IOM and NRC, 2005) Out-of-pocket cost—expenses for medical care that are not reimbursed by insurance. Out-of-pocket costs include deductibles, coinsurance, and copayments for covered services plus all costs for services that are not covered (HealthCare.gov, 2013b)

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APPENDIX A 363 Palliative care—patient- and family-centered care that optimizes qual- ity of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice (NQF, 2006) Patent—an exclusive right to the benefits of an invention or improvement granted by the U.S. Patent Office, for a specific period of time, on the basis that it is novel (not previously known or described in a publication), “non- obvious” (a form which anyone in the field of expertise could identify), and useful (The Free Dictionary, 2013) Patient-centered care—providing care that is respectful of and responsive to individual patient, needs, values, and preferences and ensuring that patient values guide all clinical decisions (IOM, 2001) Patient-centered communication—processes and outcomes of the patient- clinician interaction that elicit, understand, and validate the patient’s per- spective (e.g., concerns, feelings, expectations); understand the patient within his or her own psychological and social context; reach a shared understanding of the patient’s problem and its treatment; help a patient share power by offering him or her meaningful involvement in choices relating to his or her health; build a stronger patient-clinician relationship characterized by mutual trust, respect, and commitment; and enhance the patient’s well-being to reduce suffering after the patient leaves the consultation (adapted from Epstein and Street, 2007) Patient-clinician interactions—the communication, shared decision mak- ing, and provision of care that occurs between patients and their care teams (see Chapter 3) Patient navigation—individualized assistance offered to patients, fami- lies, and caregivers to help overcome health care system barriers and facilitate timely access to high-quality medical and psychosocial care from pre-diagnosis through all phases of the cancer experience (C-Change, 2005) Patient-reported outcome—health data provided by patients, including feedback on their feelings or what they are able to do as they are dealing with chronic diseases or conditions, delivered through a system of report- ing (PROMIS, 2012)

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364 DELIVERING HIGH-QUALITY CANCER CARE Patient safety—freedom from accidental or preventable injuries produced by medical care. Thus, practices or interventions that improve patient safety are those that reduce the occurrence of preventable adverse events (AHRQ, 2012b) Payment models—methods for reimbursing clinicians. Examples include capitation, fee-for-service, and pay-for-performance (see Chapter 8) Performance improvement initiatives—systematic, data-guided activi- ties designed to bring about immediate, positive change in the delivery of health care in a particular setting (Baily, 2008) Preferences—a patient’s concerns, expectations, and choices regarding health care, based on a full and accurate understanding of care options (adapted from IOM, 2001, 2003) Prevalence—the number of existing cases of a disease at one point in time (adapted from NCI, 2013b) Prognosis—the likely outcome or course of a disease; the chance of recov- ery or recurrence (NCI, 2012) Psychosocial health services—psychological and social services and in- terventions that enable patients, their families, and health care providers to optimize biomedical health care and to manage the psychological/ behavioral and social aspects of illness and its consequences so as to pro- mote better health (IOM, 2008a) Quality measure or metric—quantitative indicators that reflect the degree to which care is consistent with the best available, evidence-based clinical standards (IOM, 2005) Quality of care—the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge (IOM, 1990) Quality of life—the overall enjoyment of life. Many clinical trials assess the effects of cancer and its treatment on the quality of life. These studies measure aspects of an individual’s sense of well-being and ability to carry out various activities (IOM and NRC, 2005) Radiation therapy—the use of high-energy radiation from X-rays, gamma rays, neutrons, and other sources to kill cancer cells and shrink tumors.

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APPENDIX A 365 Radiation may come from a machine outside of the body (external-beam radiation therapy), or it may come from radioactive material placed in the body near cancer cells (internal radiation therapy, implant radiation, or brachytherapy). Systemic radiotherapy uses a radioactive substance, such as a radiolabeled monoclonal antibody, that circulates throughout the body, also called radiation therapy (NCI, 2012) Randomized clinical trial—a study in which the participants are assigned by chance to separate groups that compare different treatments; neither the researchers nor the participants can choose the group to which they are assigned. Using chance to assign people to groups means that the groups will be similar and the treatments they receive will be compared objectively. At the time of the trial, it is not known which treatment is best. It is the patient’s choice to be in a randomized trial (NCI, 2012) Recurrence—cancer that has recurred (come back), usually after a period of time during which the cancer could not be detected. The cancer may come back to the same place as the original (primary) tumor or to another place in the body (NCI, 2012) Remission—a decrease in or disappearance of signs and symptoms of can- cer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer may still be in the body (NCI, 2012) Shared decision making—the process of negotiation by which physicians and patients arrive at a specific course of action, based on a common un- derstanding of the goals of treatment, the risks and benefits of the chosen treatment versus reasonable alternatives, and the patient’s needs, values, and preferences (adapted from IOM, 2011d) Staging—performing exams and tests to learn the extent of the cancer within the body, especially whether the disease has spread from the origi- nal site to other parts of the body. It is important to know the stage of the disease in order to plan the best treatment (NCI, 2012) Survivor—an individual is considered a cancer survivor from the time of cancer diagnosis through the balance of his or her life, according to the National Coalition for Cancer Survivorship and the NCI Office of Cancer Survivorship. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this defini- tion (IOM and NRC, 2005)

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366 DELIVERING HIGH-QUALITY CANCER CARE Survivorship care—a distinct phase of care for cancer survivors that in- cludes four components: (1) prevention and detection of new cancers and recurrent cancer; (2) surveillance for cancer spread, recurrence, or second cancers; (3) intervention for consequences of cancer and its treatment; and (4) coordination between specialists and primary care providers to ensure that all of the survivor’s health needs are met (IOM and NRC, 2005) Survivorship research—encompasses the physical, psychosocial, and economic sequelae of cancer diagnosis and its treatment among both pediatric and adult survivors of cancer. It also includes within its domain issues related to health care delivery, access, and follow-up care as they re- late to survivors. Survivorship research focuses on the health and life of a person with a history of cancer beyond the acute diagnosis and treatment phase. It seeks both to prevent and to control adverse cancer diagnosis and treatment-related outcomes, such as late effects of treatment, second cancers, and poor quality of life; to provide a knowledge base regarding optimal follow-up care and surveillance of cancers; and to optimize health after cancer treatment (IOM and NRC, 2005) Systematic review—a scientific investigation that focuses on a specific question and uses explicit, planned scientific methods to identify, select, assess, and summarize the findings of similar but separate studies. It may or may not include a quantitative synthesis of the results from separate studies (meta-analysis) (IOM, 2011b) Team-based care—the provision of health services to individuals, fami- lies, and/or their communities by at least two health care clinicians who work collaboratively with patients and their caregivers—to the extent preferred by each patient—in order to accomplish shared goals within and across settings to achieve coordinated, high-quality care (Mitchell et al., 2012) Total cost—the direct medical costs resulting from the provision of cancer care (see Chapter 3) Toxicity—a measure of the degree to which something is toxic or poison- ous (IOM and NRC, 2005) Value-based insurance design (VBID)—a benefit design that is intended to encourage patients to choose beneficial treatments and forgo treatments with little or no benefit. High-quality cancer interventions would be avail- able at little or no out-of-pocket costs to patients, and interventions that

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APPENDIX A 367 are of questionable benefit to patients would require more cost sharing (IOM, 2009a) Value-based purchasing (VBP)—links provider payments to improved performance by health care providers. This form of payment holds health care clinicians accountable for both the cost and the quality of care they provide.VBP attempts to reduce inappropriate care and to identify and reward the best-performing providers (HealthCare.gov, 2013a) Values—a patient’s concerns, expectations, and choices regarding health care, based on a full and accurate understanding of care options (adapted from IOM, 2001, 2003) Vulnerable and underserved—people who may have difficulty accessing high-quality cancer care, including but not limited to racial and ethnic mi- norities, older adults, individuals living in rural and urban underserved areas, uninsured and underinsured individuals, and populations of lower socioeconomic status (see Chapter 8) References AHRQ (Agency for Healthcare Research and Quality). 2012a. National quality measures clear- inghouse: Glossary. http://www.qualitymeasures.ahrq.gov/about/glossary.aspx (ac- cessed May 1, 2012). ———. 2012b. Patient safety network: Glossary. http://www.psnet.ahrq.gov/glossary.aspx (accessed March 21, 2012). ———. 2013a. Coordinated care. http://pcmh.ahrq.gov/portal/server.pt/community/pcmh__ home/1483/pcmh_tools___resources_coordinated_care_v2 (accessed April 22, 2013). ———. 2013b. Advance care planning, preferences for care at the end of life. http://www.ahrq. gov/research/findings/factsheets/aging/endliferia/index.html (accessed April 1, 2013). Baily, M. A. 2008. Harming through protection? New England Journal of Medicine 358(8):768-769. BDWG (Biomarkers Definitions Working Group). 2001. Biomarkers and surrogate endpoints: Preferred definitions and conceptual framework. Clinical Pharmacology and Therapeutics 69(3):89-95. C-Change. 2005. Cancer patient navigation. http://www.cancerpatientnavigation.org (ac- cessed May 2, 2012). CMTP (Center for Medical Technology Policy). 2013. Coverage with evidence development. http://www.cmtpnet.org/coverage-with-evidence-development (accessed March 28, 2013). Epstein, A., and R. Street. 2007. Patient-centered communication in cancer care: Promoting healing and reducing suffering. Bethesda, MD: National Cancer Institute. The Free Dictionary. 2013. Patent. http://legal-dictionary.thefreedictionary.com/patent (ac- cessed April 22, 2013). HealthCare.gov. 2013a. Glossary. http://www.healthcare.gov/glossary/v/vbp.html (ac- cessed March 28, 2013). ———. 2013b. Out-of-pocket costs. http://www.healthcare.gov/glossary/O/oop-costs.html (accessed April 22, 2013).

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368 DELIVERING HIGH-QUALITY CANCER CARE IOM (Institute of Medicine). 1990. Medicare: A strategy for quality assurance. Vol. 1. Washing- ton, DC: National Academy Press. ———. 1993. Access to health care in america. Washington, DC: National Academy Press. ———. 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press. ____. 2003. Unequal treatment: Confronting racial and ethnic disparities in health care. Washing- ton, DC: The National Academies Press. ———. 2004. Health literacy: A prescription to end confusion. Washington, DC: The National Academies Press. ———. 2005. Assessing the quality of cancer care: An approach to measurement in Georgia. Wash- ington, DC: The National Academies Press. ———. 2008a. Cancer care for the whole patient: Meeting psychosocial health needs. Washington, DC: The National Academies Press. ———. 2008b. Retooling for an aging america: Building the health care workforce. Washington, DC: The National Academies Press. ———. 2009a. Assessing and improving value in cancer care. Washington, DC: The National Academies Press. ———. 2009b. Initial national priorities for comparative effectiveness research. Washington, DC: The National Academies Press. ———. 2009c. Conflict of interest in medical research, education, and practice. Washington, DC: The National Academies Press. ———. 2010. A foundation for evidence-driven practice: A rapid learning system for cancer care: Workshop summary. Washington, DC: The National Academies Press. ———. 2011a. Clinical practice guidelines we can trust. Washington, DC: The National Acad- emies Press. ———. 2011b. Finding what works in health care: Standards for systematic reviews. Washington, DC: The National Academies Press. ———. 2011c. Health IT and patient safety: Building safer systems for better care. Washington, DC: The National Academies Press. ———. 2011d. Patient-centered cancer treatment planning: Improving the quality of oncology care: Workshop summary. Washington, DC: National Academies Press. ———. 2012. Living well with chronic illness: A call for public health action. Washington, DC: The National Academies Press. IOM and NRC (National Research Council). 2005. From cancer patient to cancer survivor: Lost in transition. Washington, DC: The National Academies Press. MedPAC (Medicare Payment Advisory Commission). 2010. Report to the Congress: Aligning incentives in Medicare. http://www.medpac.gov/documents/jun10_entirereport.pdf (accessed March 28, 2013). Mitchell, P., M. Wynia, R. Golden, R. McNellis, S. Okun, C. E. Webb, V. Rohrbach, and I. Von Korhorn. 2012. Core principles and values of effective team-based health care. Washing- ton, DC: Institute of Medicine. NCI (National Cancer Institute). 2012. National cancer institute: Dictionary of cancer terms. http://www.cancer.gov/dictionary (accessed May 2, 2012). ———. 2013a. Cancer control continuum. http://cancercontrol.cancer.gov/od/continuum. html (accessed April 22, 2013). ———. 2013b. Cancer health disparities. http://www.cancer.gov/cancertopics/factsheet/ disparities/cancer-health-disparities (accessed April 22, 2013). ———. 2013c. Extramural glossary. deais.nci.nih.gov/glossary (accessed April 22, 2013). NHPCO (National Hospice and Palliative Care Organization). 2013. Advance care planning. http://www.nhpco.org/advance-care-planning (accessed April 1, 2013).

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APPENDIX A 369 NIA (National Institute on Aging) and NIH (National Institutes of Health). 2010. End of life: Helping with comfort and care. http://www.nia.nih.gov/health/publication/end-life- helping-comfort-and-care (accessed May 2, 2012). NQF (National Quality Forum). 2006. A national framework and preferred practices for palliative and hospice care quality. http://www.qualityforum.org/Publications/2006/12/A_National_ Framework_and_Preferred_Practices_for_Palliative_and_Hospice_Care_Quality.aspx (accessed May 22, 2013). ONC (Office of the National Coordinator for Health Information Technology). 2013a. Clini- cal decision support. http://www.healthit.gov/policy-researchers-implementers/ clinical-decision-support-cds (accessed February 14, 2013). ———. 2013b. Learn HER basics. PROMIS (Patient-Reported Outcomes Measurement Information System). 2012. What patient reported outcomes are. http://www.nihpromis.org/Patients/PROs (accessed September 18, 2012). RAND. 2011. Payment reform: Analysis of models and performance measurement implications. Santa Monica, CA: RAND Corporation. Sloan, F. A. 1996. Valuing health care: Costs, benefits, and effectiveness of pharmaceuticals and other medical technologies. Edited by F. A. Sloan. New York: Cambridge University Press. Smith, A. P., and M. Y. Lichtveld. 2013. A competency-based approach to expanding the cancer care workforce. http://c-changetogether.org/Websites/cchange/Images/MedSurg%20 Journals/2007/MSJApril07_C-Change.pdf (accessed April 22, 2013).

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