Patient/Community-Centered Outcomes Core
In 2001, the U.S. Institute of Medicine identified patient-centeredness as one of six primary aims for improving the quality of health care in the 21st century. Patient/community-centered health care is respectful of and responsive to individual patient preferences, needs and values and ensures that these guide all clinical decisions. The need to rigorously evaluate a broad range of outcomes associated with patient-centeredness at the clinician, patient and health services levels has emerged as a critical area of research inquiry.
Patient/community-centered outcomes research has generated novel and innovative research using approaches that include:
- Patient self-reporting of outcomes
- Objective, observational studies of outcomes
- Combinations of approaches
Several domains of patient-centered outcomes research have been developed that include:
- Comparative effectiveness research
- Cost effectiveness
- Community-based participatory research
- Health services research
- Health economics and health communication research
- Behavioral research
Examples of patient/community-centered outcomes within these domains include:
- Quality of life
- Psychological factors, such as depression and anxiety
- Economic outcomes, such as work hours and income lost through treatment
- Treatment decision-related outcomes, such as decisional conflict and regret
Of the five research programs that VCU Massey Cancer Center currently supports, patient/community-centered outcomes research generally falls within the context of the Cancer Prevention and Control (CPC) program, where there has been a six-year effort to build the program by stimulating such research. This highly successful effort has resulted in the recruitment of several nationally known scholars to leadership positions, including Laura Siminoff, Ph.D., Cathy Bradley, Ph.D., and Jennifer Elston Lafata, Ph.D., and also resulted in a significant increase in externally funded research. Under their expert leadership, and in collaboration with clinical leadership at Massey, the cancer center developed the Patient/Community-Centered Outcomes Core (PC-COC), a developing shared resource.
Specific aims of the PC-COC:
- Facilitate inter-programmatic research that incorporates patient/community-centered outcomes.
- Promote the inclusion of patient/community-centered outcomes during the pre-award developmental phase of studies, especially clinical trials. Examples of such inter-programmatic research include:
- Incorporating quality of life and functional status measures in therapeutic cancer clinical trials
- Measuring the number of work hours lost during chemotherapy or radiation treatment for breast cancer
- Developing insight into how participation of a cancer patient's family member during a radiotherapy consultation affects relational communication
- Determining the impact of decision support tools on levels of decisional conflict in cancer patients facing complicated treatment decisions such as joining a Phase 1 clinical trial
- Assist Massey investigators in incorporating patient/community-centered outcomes via state-of-the-art qualitative, quantitative and multi-method research protocols.