CFHealthHub Data Observatory: A Quality Improvement project and Trials within Cohort platform for Cystic Fibrosis
The Data Observatory project aims to build on the work of the CFHealthHub platform, using the adherence data collected to help improve the care that people with CF (pwCF) receive at local and national level.
The project aims to do this in two ways:
- Adherence data collected from specially-adapted nebulisers, uploaded to CFHealthHub, will be shared with CF healthcare professionals – this information can then be used, through quality improvement work, to help shape the care delivered in CF centres in supporting pwCF to self-manage their treatments successfully;
- Data available from pwCF on CFHealthHub could be used to help other research projects, either using the information available directly or to identify people to take part in other studies.
We are looking to recruit up to 6,000 adults with CF in the UK to join the CFHealthHub platform over the next 4 years. In 2017, we will look to recruit pwCF from CF centres in Sheffield, Nottingham and Southampton & Poole.
More detailed information on the study can be found in the protocol which is available to download via the ‘Downloads’ box on the right. We are also working with the Sheffield Microsystem Coaching Academy on the quality improvement aspects of the project – more information about their work can be found here.
Sheffield is currently open for recruitment.
|Dr Martin Wildman||Chief Investigator||Sheffield Teaching Hospitals NHS Foundation Trustemail@example.com|
|Dr Daniel Hind||CTRU Assistant Director||University of Sheffieldfirstname.lastname@example.org|
|Kimberley Horspool||Study Manager||University of Sheffieldemail@example.com|
|Carla Girling||Research Assistant||University of Sheffieldfirstname.lastname@example.org|
|Dr Anne Scott||Research Assistant||University of Sheffieldemail@example.com|
|Heather Dakin||Trial Support Officer||University of Sheffieldfirstname.lastname@example.org|
|Dr Pauline Whelan||m-Health Applications Manager||University of Manchesteremail@example.com|
|Michelle Lowther||Clinical Coordinator Cystic Fibrosis||Sheffield Teaching Hospitals NHS Foundation Trustfirstname.lastname@example.org|
|Sheffield Teaching Hospitals NHS Foundation Trust||
Dr Martin Wildman
Clinical Coordinator Cystic Fibrosis
|Nottingham University Hospitals NHS Trust||Dr Jane Dewar||Principal Investigator||Jane.Dewar@nuh.nhs.uk|
|University Hospital Southampton NHS Foundation Trust||Dr Julia Nightingale||Principal Investigatoremail@example.com|