JMIR Publications

ABSTRACT

Background:

Given personnel shortages, rising costs, and inefficiencies in resource allocation, accelerating the transition to value-based health care (VBHC) is essential to ensure sustainable care delivery. VBHC maximizes patient value by optimizing outcomes, controlling costs, and leveraging data to improve quality, communication, and long-term care. Integrating real world data in healthcare is important to achieve better informed decisions, especially in palliative care, where choices are complex. Outcome data can help clinicians guide patients through these challenges.

Objective:

Here, we describe the development and pilot-testing of an information tool that incorporates real world outcome data for women with metastatic breast cancer who are initiating CDK4/6 inhibitor treatment.

Methods:

We developed an information tool together with patient representatives and clinicians using a participatory development approach that consisted of five key steps: (1) establishment of a multidisciplinary steering group, (2) mapping of the patient journey and patients’ needs through focus groups and semi-structured interviews, (3) extraction of real world outcome data from electronic health records systems, (4) prototyping of the tool, and (5) pilot evaluation with the targeted patient population using semi-structured interviews. We used qualitative analysis methods to analyze the focus group and interview data.

Results:

We developed a tool consisting of: 1) a communication aid for use during doctor-patient consultations (i.e., Kijkgesprek) and 2) a two-component companion app with informational videos for use at home, both incorporating real world outcome data (i.e., Kijkbericht and Kijksluiter). Participants valued the tool for its clarity and structured design, reporting that the outcome data reinforced their experiences and facilitated the setting of realistic expectations. However, some participants described the outcome data as overwhelming, underscoring the importance of careful framing and delivery. Preferences regarding the type, level of detail, and timing of information presentation varied among participants, highlighting the necessity of individualizing information tools to meet diverse informational needs.

Conclusions:

Most patients valued the inclusion of real world outcome data in the information tool, although many found it challenging to process. Preferences for the type and presentation of information varied widely among individuals. Information tools incorporating outcome data have the potential to enhance patient understanding and support informed decision making about care that they value most. However, these tools must be designed to allow for customization, ensuring they address individual informational needs and preferences effectively.