JMIR Publications

ABSTRACT

Background:

Pediatric palliative care (PPC) is characterized by years of multisectoral and multiprofessional care. The exchange of information through effective communication between various PPC professionals is essential for high-quality care. Evidence shows that electronic cross-facility health records (ECHRs) provide useful support in this context. Given the specific needs of and content exchanged within PPC, the use of specific ECHRs in this area is necessary. To our knowledge, no ECHRs have been developed through a user-centered approach for this specific setting in Germany.

Objective:

The aim was to record PPC professionals’ needs (nurses, physicians, and secretaries) regarding ECHRs, as they may represent future users in inpatient and outpatient PPC as well as general practitioners and pediatrists from medical offices.

Methods:

Guided by design thinking, this study consisted of six steps: (1) empathize, (2) define, (3) ideate, (4) prototype, (5) test, and (6) iteration. First, qualitative interviews were conducted to assess the needs of PPC professionals. Second, the elicited needs were specified in focus groups (FGs). Prototypes of the ECHR (mock-ups) were then developed according to the needs mentioned in the interviews and were discussed in the FGs. Finally, the indicated needs were supplemented and specified in an iterative process. The mock-ups were further adapted according to these results.

Results:

Across seven main categories, medical history, actual medication, the emergency view with the most critical data, and messaging functions were identified as some participants’ desired core components of an ECHR. Utilizing design thinking facilitated an explicit articulation of user needs. The mock-ups clearly aligned the research and development team’s ideas with the simulated work in the ECHR for the users.

Conclusions:

Developing an ECHR with the content that participants identified, which is currently being shared, that integrates overarching new views and functionality would make it possible to obtain real-time data during emergencies, to track what other PPC professionals have done, and to make the applied treatments visible to others. Moreover, it would give all providers with a more comprehensive picture of the complex conditions that are common in PPC. Concerning relevant content and functionality, user-centered design, and sensitivity to the various sectors regarding the needs of PPC professionals employed in those sectors emerged as strengths of the design thinking approach. An ECHR that directly addresses user needs will foster pediatric palliative care across sectors.