Care Coordination and Delivery
The Institute of Medicine (IOM), in 1990, defined health care quality as “the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge.” Advances in the field of cancer outcomes research have expanded the conceptualization of desired patient outcomes to include not only traditional biomedical outcomes such as survival and disease-free survival, but also health-related quality of life, patient experiences of care, and economic burden. To ensure that individuals and populations benefit from high-quality cancer care, it is critical to support their adherence to treatment and prevention regimens.
Population-based data resources have allowed researchers to examine variations in the patterns and quality of care delivered in diverse health care settings, identify populations at risk for receiving sub-optimal care, and examine multilevel factors influencing disparities in the delivery of effective and timely care. In addition to population-level surveillance on quality of care, DCCPS has supported research on optimizing various structures and processes of care and examining their linkage with patient outcomes. A special emphasis has also been placed on optimizing communication and facilitating coordination among members of clinical teams, between clinical teams, and between clinicians, patients and family members.
There is a need to optimize various processes of care, including communication and coordination within each phase of the cancer control continuum (risk assessment, primary prevention, detection, diagnosis, treatment, post-treatment follow-up, and end-of-life) as well as during key transition points as patients move from one phase of the cancer continuum to another. A multilevel approach to evaluating the interrelationships between structures, processes, and outcomes, as well as developing and implementing interventions, is encouraged. Multilevel interventions go beyond the focus of traditional patient- or clinician-level studies to include the levels of clinical teams, the organization, and the health care system. Depending upon the intervention, attention might also be given to community- or national-level factors influencing quality of care. The growing emphasis is to consider effects at multiple levels of the context of care, even if an intervention may only occur at one level.
Longitudinal Surveillance and Improvement of Patient-centered Communication
What is the minimum set of measures of the six functions of patient-centered communication (fostering healing relationships, exchanging information, facilitating informed decision-making, responding to emotions and other psychosocial issues, managing uncertainty, and enabling patient self-management) that should be systematically collected as part of communication surveillance systems?
What are the sources from whom/where these data should be collected? What are the issues of system design and organizational capacity and readiness that need to be addressed in order to successfully implement such surveillance systems in a variety of care delivery settings?
How can such surveillance systems be utilized to identify points of intervention at multiple levels of assessment (patient, clinician, team, organization) that are likely to improve the delivery of patient-centered communication at different points in the cancer control continuum?
What are the best approaches for reporting data and providing feedback from such surveillance systems to clinicians and health care organization leaders that would facilitate quality improvement efforts?
What are the best approaches for simultaneously developing, evaluating, and implementing interventions at multiple levels to optimize the various functions of patient-centered communication?
How can communication surveillance systems be integrated with existing measurement systems of clinical processes and clinical and patient-reported outcomes to systematically examine the relationship between quality of care and patient outcomes?
Team-based Approaches to Cancer Care Delivery
What are the attributes of effective clinical teams? Can these attributes be reliably measured?
Are better metrics of these attributes associated with better metrics of quality such as efficiency, timeliness, effectiveness, and patient-centeredness?
What factors at the individual, group, and organizational level, and interactions among them, are likely to have an impact on team functioning in cancer care?
How can we best intervene on these factors to facilitate communication within and across clinical teams and optimize team functioning? Is improvement in team communication and functioning likely to result in improved patient health outcomes?
What role do patients and their family have in the care delivery team? Do approaches to facilitating greater patient engagement in the care delivery process result in better quality of care and patient outcomes?
What is the impact of innovative team-based models of care such as multidisciplinary treatment planning on the quality and outcomes of care? How does the approach to organizing cancer care affect patient outcomes (e.g., team-based versus sequential therapeutic processes)?
What is the impact of innovative organizational models of care such as the primary and specialty care medical homes and accountable care organizations on facilitating care coordination among members of different clinical teams within and across multiple health care organizations?
How do teams in a multi-team system optimize their functioning to share care responsibilities during the course of cancer treatment?
How does information technology help or hurt the functioning of these multi-team systems?
Optimizing Transitions in Care
What processes of care need to be optimized to deliver coordinated care to patients as they transition between different phases of the cancer control continuum?
What processes and models of care delivery may lead to high-quality transitional care (including survivorship care planning, patient navigation models, systems and teamwork approaches, shared care and patient-centered medial home models)?
How can such processes for facilitating transitional care be implemented in the context of the diverse payment mechanisms (including accountable care), integrated versus fragmented delivery arrangements, and specific settings in which cancer care is delivered (i.e., community, academic)?
How can processes and models of care focused on optimizing the quality of transitional care be tailored to accommodate changes in patient functioning, health-related quality of life, and patient preferences and capacity for engagement in care over time?
Adherence to Cancer Treatment and Prevention
NCI seeks research from across the translational science continuum aimed at improving adherence to treatment and prevention regimens to reduce cancer risk, improve treatment outcomes, and lower cancer-related morbidity, mortality, and disability. Projects of interest include but are not limited to:
- Multi-level research to understand and improve adherence to cancer prevention, vaccination, screening, treatment and follow-up care, including research that targets more than one level of an ecologic model that includes the patient-, family, provider-, healthcare system-, and community-levels.
- Multi-level research to understand and improve adherence to lifestyle recommendations related to cancer incidence and outcomes, including for diet, physical activity/sedentary behaviors, energy balance and obesity, UV protection, alcohol and tobacco use, and sleep in both healthy and survivorship populations. Researchers are encouraged to examine how multiple contexts influence behavior and adherence.
- Basic behavioral and social sciences research to better understand the mediators & moderators of adherence and factors that promote sustained adherence to cancer-related treatment and prevention regimens.
- Early-phase translational research aimed at developing novel interventions to improve adherence based on basic behavioral and social science findings using frameworks such as the ORBIT model for behavioral treatment development
- Later-phase translational research, including research aimed at identifying optimal methods for disseminating and implementing evidence-based adherence interventions within systems of care and home, school, workplace and community settings.
- Innovative theory-driven applications of technology (e.g., smartphone apps, electronic health records) and social media platforms.
- Personalized approaches to adherence, including targeted and tailored adherence interventions and messages, particularly for high-risk individuals (e.g., persons with multiple co-morbid conditions) and vulnerable or underserved populations (e.g., racial/ethnic minorities, rural populations, low socioeconomic status, LGBT, elderly populations) and the settings that serve these individuals (e.g., federally qualified health centers).
Applications of Health Information Technology to Facilitate Patient-centered Care
How can innovations in health information technology be marshalled to support the six functions of patient-centered communication (fostering healing relationships, exchanging information, facilitating informed decision-making, responding to emotions and other psychosocial issues, managing uncertainty, and enabling patient self-management)?
How can innovations in health information technology advance the incorporation of patient-reported outcomes (e.g., symptoms, health-related quality of life) into clinical practice?
How can health communication / information technologies be used to improve outcomes within and among clinical teams? For example, can these systems be used to support team decision making, to enhance situational awareness, and to facilitate the timely completion of collaborative tasks?
Can smartphones, tablets, and personal sensors be used to monitor patients’ physiological responses during outpatient treatment?
How might an interactive survivorship care plan be used to help cancer survivors and clinicians monitor for recurrence, detect any new cancers early, and protect against late-stage sequelae of cancer treatment?
What innovations are needed to spur greater patient support through the growing “ecosystem” of consumer communication technologies?
Arenas of Application: Multiple Chronic Conditions and Precision Medicine
How can communication and coordination for cancer patients and survivors with multiple chronic conditions be optimized?
How can we best facilitate a patient-centered approach to delivering precision medicine?