Needs Assessment for the Development of an Electronic Cross-Facility Health Record (ECHR) for Pediatric Palliative Care: A Design Thinking Approach

Abstract

Background: Pediatric palliative care (PPC) is characterized by years of multisectoral and multi-professional care. Sharing information between PPC professionals is, therefore, essential for quality care. The evidence shows that electronic cross-facility health records (ECHRs) provide useful support in this context. To our knowledge, no ECHRs have been developed through a user-centered approach for this specific setting in Germany. Methods: Guided by design thinking, first, qualitative interviews were conducted to assess the needs of PPC professionals. Second, the elicited needs were specified in focus groups (FGs). Based on the needs stated in the interviews, prototypes of the ECHR were developed and discussed in the FGs. The indicated needs were supplemented and specified in an iterative process. The prototypes were further adapted according to these results. The unified theory of acceptance and use of technology was the basic model in the evaluation of needs. Results: Across seven main categories, past and current medication, emergency view, and messaging functions were identified as the participants’ desired core components of an ECHR. Utilizing design thinking facilitated the explicit articulation of user needs. Conclusions: Developing an ECHR with the content identified would allow for real-time data during emergencies, tracking what other PPC professionals have done, and making the applied treatments visible to others. This would offer a broader picture of the complex conditions common to PPC.

Planning for Implementation Success of an Electronic Cross-Facility Health Record for Pediatric Palliative Care Using the Consolidated Framework for Implementation Research (CFIR)

“…In the sense of participatory design, potential future users (nurses, physicians, secretaries, and psychosocial staff) were involved in developing the ECHR [ 5 , 6 ]. This included PPC professionals from one PPCU and three SOPPC teams, and physicians from MOs (pediatrists and general practitioners) with experience with PPC patients.…”

“…To support the exchange of information between PPC professionals, a shared electronic cross-facility health record (ECHR) was designed in a participatory design approach with future users [ 5 , 6 ]. The resulting ECHR differs from currently existing ECHRs in Germany that pursue a similar purpose: existing ECHRs share information regarding an indication-specific and time-limited treatment episode as a case (e.g., hospital stay from 1 January 2021 to 1 August 2021) with post ambulatory treatment for some weeks.…”

Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study

“…The prototype ECHR (hereafter ECHR) system in this study was developed in the ELSA-PP project, including a comprehensive needs assessment and conceptualization phase [16].…”

“…Shared electronic health records allow easy access to patient information, a reduced risk of treatment errors, an increased efficiency of professionals, and a reduction of national healthcare costs [13]. The shared electronic health records that currently exist in Germany only serve to transfer files and are case related (e.g., for a hospital to transfer information from the hospital to the general practitioner) [14][15][16]. This existing concept is not sufficient for PPC: professionals want to work collaboratively on documents and have the possibility to view the documentation history of all involved PPC professionals since diagnosis of a life-limiting illness.…”

“…The participatory design followed the design thinking model consisting of the following steps: (1) empathy, (2) define, (3) ideate, (4) prototype, (5) test, and (6) iterate. The exact procedure is described in a related paper [16]. This article describes that, in terms of iteration, the software previously tested as a prototype was programmed and then tested with potential future users.…”