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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.

Recruitment status

Sheffield Teaching Hospitals is currently open for recruitment.
Nottingham University Hospital is currently open for recruitment.
University Hospital Southampton is currently open for recruitment.

Study staff:

Name Role Organisation Contact
Dr Martin Wildman Chief Investigator Sheffield Teaching Hospitals NHS Foundation Trust
Dr Daniel Hind CTRU Assistant Director University of Sheffield
Carla Girling Study Manager University of Sheffield
Anna Packham Research Assistant University of Sheffield
Annaliza Todd Research Assistant University of Sheffield
Heather Dakin Trials Support Officer University of Sheffield
Dr Pauline Whelan m-Health Applications Manager University of Manchester
Steven Antrobus Senior Technical Project Manager FARR Institute
Steve Harrison Head of Quality Improvement Sheffield Teaching Hospital
Michelle Lowther Clinical Coordinator Cystic Fibrosis Sheffield Teaching Hospitals NHS Foundation Trust
Katy Strowbridge Research Secretary Sheffield Teaching Hospitals NHS Foundation Trust
0114 2269808
Elizabeth Shepherd Interventionist Southampton General Hospital
07864 953 731
Sophie Dawson Interventionist Nottingham University Hospital
07864 953 730

Participating sites:

Site Name Role Contact
Sheffield Teaching Hospitals NHS Foundation Trust

Dr Martin Wildman

Michelle Lowther

Principal Investigator

Clinical Coordinator Cystic Fibrosis

Nottingham University Hospitals NHS Trust Dr Jane Dewar Principal Investigator
University Hospital Southampton NHS Foundation Trust Dr Julia Nightingale Principal Investigator
The Newcastle upon Tyne NHS Foundation Trust Dr Stephen Bourke Principal Investigator
Hull and East Yorkshire Hospitals Trust (York) Dr Rebecca Thomas and Dr Dejene Shiferaw Principal Investigator (York) Principal Investigator (Hull)
University Hospital of Leicester Dr Chandra Ohri Principal Investigator
University Hospital of the Midlands (Stoke) Dr Gile Fitch and Dr Angela McGowan Co- Principal Investigators
University Hospital Bristol Dr Kathryn Bateman Principal Investigator
Barts Health NHS Trust Dr Danie Watson Principal Investigator
Oxford University Hospital Dr William Flight Principal Investigator
Plymouth Hospitals NHS Trust Dr David Derry and Dr David Waine Co-Principal Investigators
Norfolk and Norwich Hospitals Trust Dr Mark Pastures Principal Investigator