Hello! My name is Anne Marie Russell. I am a clinical research fellow at National Heart and Lung Institute, Royal Brompton Hospital and Imperial College with a special interest in interstitial lung disease (ILD) .
I have been involved in clinical research in fibrotic lung disease for the last decade. My research interests are in patient reported outcome measures (PROM); symptom management and optimizing quality of life through patient centered approaches
I was introduced to Eamonn Costello, CEO of patientMpower, through a professional colleague and have seen the patientMpower app grow from a concept to a comprehensive and integral element of the lives of many people diagnosed with idiopathic pulmonary fibrosis (IPF). I am delighted to have the opportunity to work with Eamonn Costello and Colin Edwards and that they have chosen to integrate the IPF PROM into the patientMpower app
Many patients diagnosed with IPF experience challenging symptoms such as severe breathlessness. This can result in feelings of frustration and a lack of control in carrying out daily activities. Having access to the patientMpower app enables some people living with IPF to regain elements of control in managing their condition. The patientMpower app allows the user to record serial objective measurements such as forced vital capacity (FVC) using the integrated spirometer; oxygen saturation and steps walked.
Completing the 13 questions on the IPF PROM objectively records your experiences of breathlessness, energy levels and psychological well being in addition to overall quality of life. Recording these measurements at serial time points can help you to be aware of changes in your symptoms. This can lead to lead to more informed discussions with your healthcare provider
I like the fact that patients can use the patientMpower app according to their own preferences so it suites their individual needs. By consenting to share information collected via the app with the patientMpower digital biobank, patients are helping to shape important research questions for the future. By sharing their data, app users are enabling us to gain greater insight into how IPF behaves over time. Working together in this way will enable us to develop more effective interventions and management strategies of people living with this condition.