century cancer care organizations will be learning systems
, able to measure patterns of performance that are critical to patient care and organizational survival.1, 7, 59
Organizational learning—which is used here to describe the capability of a practice or system to acquire new information, modify interdependent processes, and ultimately change (improve) how it works—requires more than IT. It requires availability of appropriate content, structured and standardized in ways that are meaningful to patients, practitioners, and administrative staff, and accessible for monitoring, decision support, and quality improvement. Organizational learning is a function of the quality
of measurement and the capability of IT to ensure successful acquisition and transmission of this information at the appropriate time and place. Given cancer’s complex presentation in clinical practice, measuring and applying knowledge about optimal care is further considered below.
Improving the knowledge base
High-performing modern cancer care organizations are knowledge-based in that they use
scientific evidence to guide decision making. In clinical practice, this means pairing evidence-based medicine with evidence-based management
directed to improving clinical effectiveness.60
This issue is relevant in cancer care as studies find both underuse of guideline-based care61, 62
and overuse of services.63
describes several ongoing measurement initiatives. All of these can be characterized as passive
quality measurement systems, where performance data are collected after care has been delivered. Feedback lags range from several months, in the case of the Quality Oncology Practice Initiative (QOPI), to almost 2 years for measurement systems that rely on cancer registries as the source of data collection and reporting. The Commission on Cancer (CoC) recently launched a pilot program to test near real-time reporting and tracking of breast and colorectal cancer patients as part of a Rapid Quality Reporting System (RQRS) project.7
The RQRS identifies candidate patients soon after surgery and prospectively tracks them throughout their cancer treatment. The system can electronically alert participating facilities to enable them to follow patients and determine whether compliance with guidelines is achieved. This prospective measurement system is still undergoing pilot-testing, but preliminary evidence suggests that test sites improve adherence (M. Johnson, personal communication, 2010).
Selected National Performance Measurement Systems for Cancer Diagnosis and Treatment Indicators, 2010
These large-scale initiatives illustrate efforts to develop clinical effectiveness measures in cancer care. Their systems are more prevalent for some cancers (e.g., colorectal and breast) than others, and focus more on initial diagnosis and treatment phase of care, rather than survivorship and end-of-life care. Also, these measures are typically directed at large institutions and cancer specialty physicians, and rarely receive attention in community clinics or primary care settings. Few studies have assessed optimal methods for capturing and reporting the clinical information from medical records necessary to support and sustain these measurement systems in practice-based IT environments.
This knowledge gap is especially relevant for cancer care where many quality measurement systems are still evolving from paper-based chart abstraction to electronic platforms. For example, evidence from the NCI Community Cancer Centers Program (NCCCP) suggests a major barrier to sustained participation in a quality improvement collaborative using QOPI is whether the oncology practice has a functioning EHR.64
Nevertheless, recent efforts to develop and deploy these measures show willingness among cancer organizations to regard quality measurement and improvement as a high priority.
Enhancing patient-centered care
Patient-centered cancer care focuses on the preferences, needs, and overall experience of cancer patients, as defined by patients themselves and their families. Interest has grown in incorporating patient perspectives into measurement systems that evaluate cancer care delivery, either in terms of measuring and interpreting the clinical benefit of therapies or the patient care experience. However, to be useful in cancer care delivery, IT infrastructure is needed to capture these measures throughout the entirety of a patient’s treatment. Thus, a compelling “business case” is essential for persuading IT vendors to build and deploy applications that support: longitudinal data collection on patient experiences, computer adaptive technology for patient and practitioner reporting and feedback, and organizational studies on incorporating these measures in clinical practice.
Broadly defined, patient-reported outcomes (PROs) comprise information from patients that reflect on the health-related quality of life (HRQOL) that patients experience from a disease and its treatment. As described above, cancer diagnosis and treatment are often associated with high distress and toxicity, resulting in burdensome symptoms, like fatigue and pain, that are best measured by asking the patient directly. Considerable evidence shows that these side effects are often deemphasized in cancer diagnosis and treatment,65
and clinicians tend to systematically report fewer symptoms of lower severity compared with patient reports.66
Patients’ symptom reports also have been correlated with adverse outcomes, including functional and emotional disability and rehospitalization.67
Despite decades of research on cancer HRQOL in clinical trials, research on its application in clinical practice is a newer development.68, 69
A recent symposium described promising use of HRQOL instruments in clinical practice, especially for their ability to screen for functional problems, improve clinician–patient interactions, and address quality of care from the patient perspective.70
Yet, considerable barriers remain, including low acceptance of the clinical utility of these measures by physicians; lack of standardized, IT-enabled measurement and data collection that integrate seamlessly into practice; lack of guidelines on incorporating and using these measures in clinical workflow and decision making; and difficulty adapting these measures and their meaning to the increasingly complex cultural, language, and communication preferences of cancer patients.
Cancer organizations, especially cancer centers, have been engaged in patient satisfaction reporting and tracking of global ratings of care for years. However, fewer cancer organizations have focused measurement on the broader construct of patient experience that includes other attributes of the healthcare encounter considered valuable to patients (e.g., access, patient–physician communication, satisfaction with decision making regarding care planning and treatment). Many qualitative and population-based studies document that patient reports on these attributes are considered the gold standard of care assessment.71
Yet, because many measurement systems used by cancer organizations are proprietary, little published research is available that directly assesses the utility of these measurement systems for quality management and improvement in care delivery. Most randomized trials in this area focus on patient–clinician communication and decision quality. Few of these studies use proprietary measures of patient experience widely used in cancer organizations as either primary or secondary end points. Beyond communication and decision quality, only a few nonrandomized studies are available to assess relationships between PRO measures and improved patient-centered cancer care in actual care delivery settings72, 73
Efforts are underway by federal agencies to expand the availability of cancer-related patient experience measurement systems for research and practice. NCI and AHRQ are sponsoring development of quality indicators of effective patient–clinician communication in cancer care, and are collaborating on a cancer module of the Consumer Assessment of Healthcare Plans Survey. Hopefully, development of actionable patient communication quality indicators and measurement systems like these will accelerate research on their use by diverse cancer care providers across communities and settings.
Enabling systems-minded approaches
cancer care organizations examine the entire care system in a holistic way, intervening—if necessary—to optimize care coordination and continuity. As described earlier, nowhere is that need more evident in modern healthcare than with the increasing use of multispecialty cancer care. Design and assessment of multidisciplinary care centers is emerging. These centers view care coordination as a specialty challenge, enhancing teamwork and communication across cancer surgeons, radiation oncologists, and medical oncologists in treatment planning and execution.74
More work is needed (especially in community settings) to incorporate the primary care physician as part of the definition and to measure care coordination, especially when considering the ubiquitous interfaces between primary care and specialty care throughout the cancer care continuum.75
Measures also are needed that enable patients’ assessments of care coordination. Patients cannot be expected to accurately assess the nature and quality of information exchange within their care team, but they can recognize when care coordination is lacking, be it during the hand-offs between physicians (e.g., lack of familiarity of physicians with prior treatment histories), or in the confusion over next steps in care delivery (either by themselves or by other members of their care team).