Right Information, Right Patient, Right Time: Utilizing the MyCareCompass Platform to Deliver Patient Education in the Oncology Setting.

Patient education is an important part of cancer care as it increases patient activation and informed decision-making, reduces anxiety, and improves outcomes. However, challenges to providing appropriate education to patients exist on both the health provider and patient side of the equation, e.g., time constraints and health literacy issues. Digital health education is a fast-growing field of interest that has been shown to improve health outcomes, increase effectiveness of medical treatments and education, lower medical costs, and enhance both clinical diagnosis and research opportunities by streamlining data collection, sharing, and analysis. In 2019, Fox Chase Cancer Center was selected by ARCHES, an established patient education software company, to pilot its award-winning digital patient engagement system MyCareCompass. During the pilot, patients scheduled for port insertions were sent electronic messages inviting them to review various online educational materials related to their procedure and subsequent concerns. The invitations and resources were seamlessly integrated into the scheduling system and timed to arrive when patients would most need them. There was high usage of the port-related materials and patients reported a high level of satisfaction with the delivery system and the information. This automated process of delivering high-quality and relevant patient education was able to be implemented smoothly with IT involvement, had a positive impact on patients without adding any extra burden to the care team, and highlighted opportunities to integrate these types of interventions into routine care.

Using theory and user-centered design in digital health: The development of the mychoice communication tool to prepare patients and improve informed decision making regarding clinical trial participation.

OBJECTIVE: Designing salient digital health interventions requires theoretically-based formative research and user-center design with stakeholder input throughout impacting content and technology design. mychoice is a theory-based, stakeholder-guided digital health tool to improve clinical trial informed decision making, particularly among African American patients. METHODS: mychoice was developed by (1) mixed-methods formative research, including in-depth interviews (n=16) and surveys (N=41) with African American cancer patients who had and had not participated in a clinical trial; (2) e-tool design process including perceptual mapping analysis to prioritize messages, multi-disciplinary team and stakeholder input; and (3) iterative production and user testing. RESULTS: Interview findings showed that clinical trial participants expressed more positive attributes about and an openness to consider clinical trials, even though they expressed common concerns such as "fear of being a guinea pig". Survey results indicated that clinical trial participants expressed they had been given information to make the decision (P = .001), while those who had not more frequently reported (P > .001) that no one had talked to them about trials. Perceptual mapping indicated that values such as "helping find a cure" or "value to society" had little resonance to those who had not participated, providing message strategy for prototype development. User testing of the tool resulted in modifications; the most significant was the adaptation to a multi-cultural version. CONCLUSIONS: With the promise of digital health interventions, theory-guided, user-centered and best practice development is critical and mychoice serves as an example of the application of these principles.

Exploring Racial Disparities in Awareness and Perceptions of Oncology Clinical Trials: Cross-Sectional Analysis of Baseline Data From the mychoice Study.

BACKGROUND: Black/African American adults are underrepresented in oncology clinical trials in the United States, despite efforts at narrowing this disparity. OBJECTIVE: This study aims to explore differences in how Black/African American oncology patients perceive clinical trials to improve support for the clinical trial participation decision-making process. METHODS: As part of a larger randomized controlled trial, a total of 244 adult oncology patients receiving active treatment or follow-up care completed a cross-sectional baseline survey on sociodemographic characteristics, clinical trial knowledge, health literacy, perceptions of cancer clinical trials, patient activation, patient advocacy, health care self-efficacy, decisional conflict, and clinical trial intentions. Self-reported race was dichotomized into Black/African American and non-Black/African American. As appropriate, 2-tailed t tests and chi-square tests of independence were used to examine differences between groups. RESULTS: Black/African American participants had lower clinical trial knowledge (P=.006), lower health literacy (P<.001), and more medical mistrust (all P values <.05) than non-Black/African American participants. While intentions to participate in a clinical trial, if offered, did not vary between Black/African American and non-Black/African American participants, Black/African American participants indicated lower awareness of clinical trials, fewer benefits of clinical trials, and more uncertainty around clinical trial decision-making (all P values <.05). There were no differences for other variables. CONCLUSIONS: Despite no significant differences in intent to participate in a clinical trial if offered and high overall trust in individual health care providers among both groups, beliefs persist about barriers to and benefits of clinical trial participation among Black/African American patients. Findings highlight specific ways that education and resources about clinical trials could be tailored to better suit the informational and decision-making needs and preferences of Black/African American oncology patients.