Elaine Boland: Digital care management in palliative care

As a Palliative Medicine consultant working in a large, busy NHS hospital, I visit patients on all wards and work closely with the treating teams. Clear documentation of our input and the outcomes achieved is essential. The patients I assess usually have complex symptoms and a large number of these have a short prognosis. Demonstrating improved symptoms, capturing advance care planning, and showing if and how we improve patient wellbeing is vital.

As a team, we were using different electronic systems and needed to improve our documentation, especially of outcomes (improved symptoms and other concerns from the patient perspective). We designed an electronic clinical data capture form to record palliative care assessments, advance care planning and to enable integration of Integrated Palliative Outcome Scale (IPOS) into clinical practice. The IPOS is a validated instrument that measures patients' physical symptoms, psychological, emotional and spiritual, and information and support needs in advanced illness (1). A digital dashboard, created in collaboration with the Trust’s Business Intelligence Team, was developed to support service development and capture activity and outcomes.

Our digital dashboard offers visual insights into daily activities, our positive impact on patients wellbeing and aids in identifying education and training requirements. It collects useful real-time data for the team and creates infographics that are a valuable tool for visual communication.

Implementation of the electronic record and dashboard was not easy. A proactive, people-centric approach to change was adopted. The team needed training, engagement, commitment and infrastructure. A well-drafted plan helped team members connect with the change and understand their roles and responsibilities in making the initiative successful. Fostering a culture of accountability empowers team members with a sense of ownership, and drives the change. Change is hard and it pushed out team to the limit but a few months down the line this is now second nature for us. We are also able to report the positive impact of our care for patients and families, and work to systematically improve this, where needed.

1. Murtagh FEM, Ramsenthaler C, Firth A, Groeneveld EI, Lovell N, Simon ST, Denzel J, Bernhardt F, Schildmann EM, Oorschot B, Hodiamont F, Streitwieser S, Higginson IJ, Bausewein C. A Brief, Patient- and Proxy-Reported Outcome Measure in Advanced Illness: Validity, Reliability and Responsiveness of the Integrated Patient Outcome Scale (IPOS). Palliative Medicine, 2019. Vol. 33(8) 1045–1057. https://doi.org/10.1177/0269216319854264