The objective of this proposal is to advance Dr. Kuang-Yi Wen's long-term goal of developing an independent research program to develop, evaluate and disseminate quality improvement initiatives that are designed for the promotion of patient-center care within ambulatory settings and based on use of health information and communication technology. Dr. Wen is a Health Systems Engineer with postdoctoral training in psychosocial medicine and medical informatics. The K01 award will allow her to achieve her goal through a 5-year career development program that includes didactic training and mentored research. Her interdisciplinary training plan, consisting of coursework across the fields of health services research with a focus on conduct and design of randomized controlled trials, medical informatics applied to clinical research, and human factors/usability engineering, will greatly strengthen and augment her grounding in these areas. She has assembled a mentorship and consulting team that spans these specialties which will guide her during her training and in the application of these disciplines to her research. The combination of mentoring and structured coursework will equip Dr. Wen with the knowledge and skills necessary for her development as an independent researcher in the area of utilizing and integrating patient-centered information technology into clinical settings. While expanding and enriching her prior research experience in Interactive Health Communication Systems, the proposed projects will also extend Dr. Wen's research into a new dimension, the application of patient accessible electronic medical records (PAMR). Patient use of online electronic medical records holds the potential to make incremental improvements in health outcomes. Educational materials that are made available within PAMR will not only help patients understand their clinical data, but also support them through use of integrated behavioral and health communication strategies in a comprehensive format that contributes to optimum care. Breast cancer, the most common cancer and the second leading cause of cancer deaths among women, accounts for 29% of all new cancer diagnoses in the United States. A diagnosis of breast cancer often evokes fear and distress. Studies show that breast cancer patients report that their providers often fail to understand their psychosocial and communication needs, and their need for information and skills to manage their illness and deal with the major life changes and potential emotional problems that often accompany it. To bridge the divide between patients and the healthcare system, the primary objective of the proposed research is to integrate within a patient portal called "MyHealthPortal," personal information from an electronic medical record with educational and support content about breast cancer treatment decision making and care management. Guided by the Cognitive-Social Health Information Processing Model, health communication best practices, and human factors and usability engineering principles, the research aims are: 1) develop a patient-centered web-based portal (MyHealthPortal) for breast cancer patients undergoing treatment in a Comprehensive Cancer Center. Users will be provided with tools that are integrated with their personal medical records to learn about their diagnosis, treatment, and to manage their care through resources such as: health information, decisional and emotional support, and clinical communication capability and 2) to conduct a pilot randomized controlled trial study to assess the feasibility and potential impact of the MyHealthPortal system with early-stage breast cancer patients. Using an iterative developmental process, aim 1 will be accomplished through four phases of the research plan to ensure a user-centered design and the acceptance of the portal among both the targeted audience and health care providers. Phase 1 includes survey research to assess our existing institutional portal users'satisfaction with the current portal and identify features in need of improvement. Phase 2 consists of a qualitative study to identify breast cancer patients'information needs and preference for a PAMR-integrated portal. Phase 3 includes a qualitative study to explore breast cancer clinicians'attitudes and expectations regarding the implementation of a patient portal which integrates shared medical records and e-communication capability that will impact on doctor-patient relationship. Phase 4 includes both cognitive user and usability testing for system refinement to maximize MyHealthPortal's usefulness and patient satisfaction.
The Aim 2 study will evaluate the feasibility of the portal system in a pilot randomized controlled trial study with 120 breast cancer patients (n = 60 per control/intervention group) to examine the impact of the MyHealthPortal system on patient outcomes including: cancer-related distress, information competence, coping self-efficacy, physical quality of life, and doctor-patient communication. Satisfaction and usage with the MyHealthPortal system will also be evaluated among the intervention participants. The findings of the proposed research will provide preliminary data to support a R01 proposal that will examine the efficacy and cost-effectiveness of the MyHealthPortal system in a larger study. The findings of this research and the developmental process that it will employ will not only be applicable to the breast cancer population, but could also serve as a model for PAMR-integrated system development and implementation among other cancer populations. This award will provide Dr. Wen with substantial experience conducting rigorous health care system quality improvement research through the utilization of health information technology and facilitate her development of advanced interdisciplinary skills.
The internet is becoming an important source of information for patients with breast cancer, the most common cancer among women in the United States, but unfortunately, very few web-based educational interventions for such patients integrate personal information from an electronic medical record with educational and psychosocial support content about breast cancer treatment decision making and care management that is based on behavioral and health communication strategies. The proposed research will inform future efforts to employ patient-centered health information technology in the form of electronic medical records as a vehicle for delivery of theoretically-driven intervention content in an integrated portal format. The model of care and the process employed in the development of the integrated portal have the potential for wide-scale dissemination into the current care infrastructure.
|Wen, Kuang-Yi; Fang, Carolyn Y; Ma, Grace X (2014) Breast cancer experience and survivorship among Asian Americans: a systematic review. J Cancer Surviv 8:94-107|