Digital Innovation in Cystic Fibrosis Care

The way in which clinicians interact with patients has changed over recent years. The prevalence of digital communication has increased not only due to the COVID-19 pandemic, but also due to the wishes of Cystic Fibrosis patients. The availability of new technologies, concerns of cross infection and financial burden of travel to and from centres of care are just a few reasons Cystic Fibrosis patients have wished for more opportunities of remote consultations. This has led to discussions around the wants and needs of patients to develop technology to help.

Dr Sue Madge explores how the needs of both patients and clinicians were captured in order to develop a digital platform from which health related information can be shared between HCPs and patients. The complications that have arisen during the development of the platform are also discussed, along with the way in which the COVID pandemic has impacted the use of the platform and its value to the wider multidisciplinary team.

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• Dr Sue Madge

  Consultant Nurse & Director

  Read biography
  Dr Sue Madge

  Consultant Nurse & Director Royal Brompton Hospital Adult CF Centre

  Role and Location 

  Dr Madge is a Consultant Nurse and the Director of the Royal Brompton Hospital Adult CF Centre. She is both adult and paediatric trained and has worked with children and adults with CF since 1984. She also holds the position of Clinical Chair for Infection and Immunity at the hospital.

  Education 

  Dr Madge first completed State Registered Nurse training at University College Hospital, London and then Registered Sick Children’s Nurse training at Great Ormond Street Hospital. She was a ward sister on the respiratory high dependency ward for a few years and then developed one of the first CF clinical nurse specialist roles in the UK. Dr Madge worked as a clinical nurse specialist for CF until 2002 when she joined the Royal Brompton Hospital adult CF service as a consultant nurse. Following a Master’s degree, Dr Madge completed a PhD at University College, London in the area of cystic fibrosis.

  Research Interests

  Dr Madge’s areas of interest and research include adolescence and transition, fertility and pregnancy, quality of life and end of life issues. She is also the driving force behind the digital service for the adults with CF using self monitoring and virtual services.

  Memberships

  Dr Madge is the Course Director of Managing the Care of Children and Adults with Cystic Fibrosis (onsite and online). She was a Board Member of the ECFS for two terms and is a member of the ERS adult CF working group.