Multidisciplinary Software Design for the Routine Monitoring and Assessment of Pain in Palliative Care Services: The Development of PainCheck.

Abstract

The use of health information technology (HIT) to support patient and health professional communication is emerging as a core component of modern cancer care. Approaches to HIT development for cancer care are often underreported, despite their implementation in complex, multidisciplinary environments, typically supporting patients with multifaceted needs. We describe the development and evaluation of an e-health tool for pain management in patients with advanced cancer, arising from collaboration between health researchers and a commercial software development company. We adopted a research-led development process, involving patients with advanced cancer and their health professionals, focusing on use within real clinical settings. A software development approach (disciplined agile delivery) was combined with health science research methods (ie, diary studies, face-to-face interviews, questionnaires, prototyping, think aloud, process reviews, and pilots). Three software iterations were managed through three disciplined agile delivery phases to develop PainCheck and prepare it for use in a clinical trial. Findings from development phases (inception, elaboration, and construction) informed the design and implementation of PainCheck. During the transition phase, where PainCheck was evaluated in a randomized clinical trial, there was variation in the extent of engagement by patients and health professionals. Prior personal experience and confidence with HIT led to a gatekeeping effect among health professionals, who were reluctant to introduce PainCheck to patients. Patients who did use PainCheck seemed to benefit, and no usability issues were reported. Health science research methods seemed to help in the development of PainCheck, although a more rigorous application of implementation science methodologies might help to elucidate further the barriers and facilitators to adoption and inform an evidence-based plan for future implementation.