Rheumatologist Dr Sarah Mackie was joined by Ellie Snowden to discuss how her team has been using Sensemaker narrative analysis software to understand patient stories, in collaboration with the Cynefin Centre – and how this can scope out patient needs and priorities for service improvement. (Ellie Snowden leads the Health programme run by complexity pioneer Dave Snowden’s Cognitive Edge).
Oral corticosteroids such as prednisolone are an essential part of treatment for many medical conditions, but they can also cause significant side-effects for patients, which has the potential to impact adversely on their lives. The side-effects are very well known and range from those covered by national guidelines, such as bone fragility, to others that are harder to treat, such as neuropsychiatric side-effects.
We wanted to address a problem: how might we in our clinical service improve the support we offer to patients taking corticosteroids? Rather than jumping straight into addressing what we as health care providers imagine patients need, we decided to involve the patient community to find out how the patients themselves see things.
We used Dave Snowden’s Sensemaker software to capture anonymous patient stories rapidly at scale without ‘averaging out’ the diversity of experience. In this webinar we will discuss how we went about involving patients, and how we plan to use these insights to help design our improvement project – what we might change, and what we might need to measure.
We would like to hear from Q community members to help us think through how we might move from listening to patient stories to taking action to improve our service.
Dr Sarah Mackie
Dr Sarah Mackie is a rheumatologist at Leeds Teaching Hospital NHS Trust. She has a special interest in treating patients with giant cell arteritis and polymyalgia rheumatica. The mainstay of treatment for both these diseases is long-term oral corticosteroids (prednisolone). This can cause side-effects for many patients.