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 Teaching Hospitals is currently open for recruitment.
Nottingham University Hospital is currently open for recruitment.
University Hospital Southampton is currently open for recruitment.
|Dr Martin Wildman||Chief Investigator||Sheffield Teaching Hospitals NHS Foundation Trustfirstname.lastname@example.org|
|Dr Daniel Hind||CTRU Assistant Director||University of Sheffieldemail@example.com|
|Carla Girling||Study Manager||University of Sheffieldfirstname.lastname@example.org|
|Anna Packham||Research Assistant||University of Sheffieldemail@example.com|
|Annaliza Todd||Research Assistant||University of Sheffieldfirstname.lastname@example.org|
|Heather Dakin||Trials Support Officer||University of Sheffieldemail@example.com|
|Dr Pauline Whelan||m-Health Applications Manager||University of Manchesterfirstname.lastname@example.org|
|Steven Antrobus||Senior Technical Project Manager||FARR Instituteemail@example.com|
|Steve Harrison||Head of Quality Improvement||Sheffield Teaching Hospital||Steve.Harrison@sth.nhs.uk|
|Michelle Lowther||Clinical Coordinator Cystic Fibrosis||Sheffield Teaching Hospitals NHS Foundation Trustfirstname.lastname@example.org|
|Katy Strowbridge||Research Secretary||Sheffield Teaching Hospitals NHS Foundation Trustemail@example.com
|Elizabeth Shepherd||Interventionist||Southampton General Hospitalfirstname.lastname@example.org
07864 953 731
|Sophie Dawson||Interventionist||Nottingham University Hospitalemail@example.com
07864 953 730
|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 Investigatorfirstname.lastname@example.org|
|The Newcastle upon Tyne NHS Foundation Trust||Dr Stephen Bourke||Principal Investigator||Stephen.Bourke@nuth.nhs.uk|
|Hull and East Yorkshire Hospitals Trust (York)||Dr Rebecca Thomas and Dr Dejene Shiferaw||Principal Investigator (York) Principal Investigator (Hull)||Rebecca.Thomas@york.nhs.uk
|University Hospital of Leicester||Dr Chandra Ohri||Principal Investigatoremail@example.com|
|University Hospital of the Midlands (Stoke)||Dr Gile Fitch and Dr Angela McGowan||Co- Principal Investigatorsfirstname.lastname@example.org
|University Hospital Bristol||Dr Kathryn Bateman||Principal Investigator||Kathryn.Bateman@uhbristol.nhs.uk|
|Barts Health NHS Trust||Dr Danie Watson||Principal Investigatoremail@example.com|
|Oxford University Hospital||Dr William Flight||Principal Investigatorfirstname.lastname@example.org|
|Plymouth Hospitals NHS Trust||Dr David Derry and Dr David Waine||Co-Principal Investigatorsemail@example.com
|Norfolk and Norwich Hospitals Trust||Dr Mark Pastures||Principal Investigatorfirstname.lastname@example.org|