CFHealthHub Data Observatory project

The Data Observatory project aims to build on the work of the CFHealthHub platform, using objective adherence data from 17 UK Cystic Fibrosis (CF) centres to help improve the care that people with CF (pwCF) receive at local and national level.

On

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 objective adherence data from 17 UK Cystic Fibrosis (CF) centres 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:

  • First, adherence data collected using dose-counting nebulisers, will be shared with CF healthcare professionals via the CFHealthHub platform – this information can then be used within routine care encounters and within Quality Improvement projects to help shape the care delivered in CF centres in supporting pwCF to self-manage their treatments successfully;
  • Second, the ‘Trials within Cohorts’ (TwiCs) research database is intended to hold data for a large number of pwCF for future research studies, centred around behaviour change. This approach will help CF researchers to overcome the difficulties associated with conducting research in rare conditions such as high costs and poor recruitment. We have currently recruited 1300 patients, across 17 different UK CF centres to the CFHealthHub Data Observatory. The intention is to recruit up to 6,000 adults with CF to contribute objective adherence data to the CFHealthHub platform over 4 years. 

Sites currently open for recruitment

  • Sheffield Teaching Hospitals
  • Nottingham University Hospital
  • University Hospital Southampton
  • Frimley Park Hospital
  • Newcastle Royal Victoria Infirmary
  • Royal Stoke University Hospital
  • Oxford Adult Cystic Fibrosis Centre
  • Bristol Royal Infirmary
  • York Hospital
  • Royal Devon and Exeter Hospital
  • Glenfield Leicester Hospital
  • Norfolk and Norwich University Hospitals
  • University Plymouth Hospitals
  • Royal Cornwall Hospital
  • Birmingham Heartlands Hospital
  • Blackpool Victoria Hospital
  • Lewisham and Greenwich NHS Trust 
Study staff

Name

Role

Organisation

Contact

Dr Martin Wildman

Chief Investigator

Sheffield Teaching Hospitals NHS Foundation Trust

martin.wildman3@nhs.net

Prof Cindy Cooper

CTRU Oversight

Clinical Trials Research Unit, University of Sheffield

c.l.cooper@sheffield.ac.uk

Liz Cross

Trial Manager

Clinical Trials Research Unit, University of Sheffield

e.a.cross@sheffield.ac.uk

India Davids

Research Assistant

Clinical Trials Research Unit, University of Sheffield

i.davids@sheffield.ac.uk

Emma Young

Research Assistant

Clinical Trials Research Unit, University of Sheffield

e.l.young@sheffield.ac.uk

Louise Turner

Trial Support Officer

Clinical Trials Research Unit, University of Sheffield

louise.turner@sheffield.ac.uk

Dr Pauline Whelan

m-Health Applications Manager

HeRC, University of Manchester

pauline.whelan@manchester.ac.uk

Steven Antrobus

Senior Technical Project Manager

HeRC, University of Manchester

steven.antrobus@manchester.ac.uk

Steve Harrison

Deputy Director of Organisational Development

Sheffield Teaching Hospitals NHS Foundation Trust

steve.harrison6@nhs.net

Caroline Eadson

Head of Quality Improvement & Leadership Development Organisational Development

Sheffield Teaching Hospitals NHS Foundation Trust

c.eadson@nhs.net

Misbah Tahir

EMBRACE Pharmacist

Sheffield Teaching Hospitals NHS Foundation Trust

misbah.tahir@nhs.net

Amanda Bevan

National Pharmacy Lead – CF Self-care CQUIN

Southampton University Hospitals NHS Foundations Trust

amanda.bevan@uhs.nhs.uk

Marlene Hutchings

Research Physiotherapist

Sheffield Teaching Hospitals NHS Foundation Trust

marlene.hutchings1@nhs.net

Prof Madelynne Arden

Professor of Health Psychology

Sheffield Hallam University

m.arden@shu.ac.uk

Sophie Dawson

CFHealthHub Interventionist and National Quality Improvement Lead

Nottingham University Hospitals NHS Trust

Sophie.Dawson@nuh.nhs.uk

Charlotte Carolan

CFHealthhub National Quality Programme Manager

Sheffield Teaching Hospitals NHS Foundation Trust

charlotte.carolan@nhs.net

Lisa Watson

Research Coordinator and CFHealthHub Trial Sponsor

Sheffield Teaching Hospitals NHS Foundation Trust

lisa.watson24@nhs.net

Participating sites

Site

Name

Role

Contact

Sheffield Teaching Hospitals NHS Foundation Trust

Dr Martin Wildman

Principal Investigator

martin.wildman3@nhs.net

Sheffield Teaching Hospitals NHS Foundation Trust

Michelle Lowther

Clinical Coordinator

michelle.lowther1@nhs.net

Nottingham University Hospitals NHS Trust

Dr Jane Dewar

Principal Investigator

Jane.Dewar@nuh.nhs.uk

Nottingham University Hospitals NHS Trust

Sophie Dawson

Interventionist

Sophie.Dawson@nuh.nhs.uk

University Hospital Southampton NHS Foundation Trust

Dr Mark Allenby

Principal Investigator

Mark.Allenby@uhs.nhs.uk

Frimley Health NHS Foundation Trust

Dr Chris Orchard

Principal Investigator

Christopher.Orchard@fhft.nhs.uk

 

Frimley Health NHS Foundation Trust

Josie Cunningham

Interventionist

josie.cunningham@nhs.net

The Newcastle upon Tyne Hospitals NHS Foundation Trust

Dr Stephen Bourke

Principal Investigator

stephen.bourke1@nhs.net

The Newcastle upon Tyne Hospitals NHS Foundation Trust

Alan Anderson

Interventionist

alan.anderson8@nhs.net

University Hospital of the North Midlands NHS Trust (Stoke)

Dr Giles Fitch

Principal Investigator

giles.fitch@uhnm.nhs.uk

 

Oxford University Hospitals NHS Foundation Trust

Dr William Flight

Principal Investigator

william.flight@ouh.nhs.uk

Oxford University Hospitals NHS Foundation Trust

Louise Warnock

Interventionist

louise.warnock@ouh.nhs.uk

Oxford University Hospitals NHS Foundation Trust

Tracy Barnett

Interventionist

Tracy.Barnett@ouh.nhs.uk

University Hospitals Bristol NHS Foundation Trust

Dr Kathryn Bateman

Principal Investigator

Kathryn.Bateman@uhbristol.nhs.uk

University Hospitals Bristol NHS Foundation Trust

Ashley Tugwell

Interventionist

Ashley.Tugwell@uhbw.nhs.uk

York Teaching Hospital NHS Foundation Trust

Dr Rebecca Thomas

 

Principal Investigator

Rebecca.Thomas@York.nhs.uk

 

Hull University Teaching Hospitals NHS Trust

Dr Dejene Shiferaw

Principal Investigator

Dejene.Shiferaw@hey.nhs.uk

Royal Devon and Exeter NHS Foundation Trust

Dr Nick Withers

Principal Investigator

nick.withers@nhs.net

 

University Hospital of Leicester NHS Trust

Dr Chandra Ohri

Principal Investigator

chandra.ohri@uhl-tr.nhs.uk

 

University Hospital of Leicester NHS Trust

Darren Tature

Interventionist

darren.tature@uhl-tr.nhs.uk

Norfolk and Norwich University Hospitals NHS Foundation Trust

Dr Mark Pasteur

Principal Investigator

mark.pasteur@nnuh.nhs.uk

University Hospitals Plymouth NHS Trust

Dr David Derry

Principal Investigator

david.derry@nhs.net

University Hospitals Plymouth NHS Trust

Dr David Waine

Principal Investigator

david.waine@nhs.net

University Hospitals Plymouth NHS Trust

Harriet Gledhill

Interventionist

harriet.gledhill@nhs.net

University Hospitals Plymouth NHS Trust

Michelle Thomas

Interventionist

michelle.thomas1@nhs.net

Royal Cornwall Hospitals NHS Trust

Dr Jonathan Myers

Principal Investigator

jonathanmyers@nhs.net

University Hospital Birmingham NHS Foundation Trust

Dr Joanna Whitehouse

Principal Investigator

Joanna.whitehouse@heartofengland.nhs.uk

University Hospital Birmingham NHS Foundation Trust

Jocelyn Choyce

Interventionist

jocelyn.choyce@heartofengland.nhs.uk

Blackpool Teaching Hospitals NHS Foundation Trust

Dr Saba

Principal Investigator

dr.saba@nhs.net

 

Blackpool Teaching Hospitals NHS Foundation Trust

Natasha Pickering

Interventionist

natasha.pickering@nhs.net

Blackpool Teaching Hospitals NHS Foundation Trust

Michael Dooney

Interventionist

michaeldooney@nhs.net

Lewisham and Greenwich NHS Foundation Trust

Lucy Baker

Principal Investigator

lucy.baker@nhs.net


CFHealthHub overview and background

The Data Observatory opened in 2017 in three UK Cystic Fibrosis (CF) Centres: Sheffield, Nottingham and Southampton. Between 2017 and 2020, the Data Observatory has expanded to include 17 CF centres out of 28 in the UK. Participating sites have recruited a total number of 1300 patients to the system.  Using the learning from previous phases, the centres apply quality improvement cycles and behaviour change techniques, to integrate CFHealthHub as a resource accessible to all of the MDT. Most sites were able to access NHS England CQUIN funding (PSS CF self care CQUIN). The funding allowed each centre to have a dedicated Behaviour Change Interventionist  to support patients and the clinical team. The CQUIN also provided a day a week pharmacist for 14 of the English NHS Trusts. This is currently supporting the EMBRACE workstream, exploring how CFHealthHub adherence data can be used for medicines optimisation.

During COVID19 we have changed some of our processes to allow CFHealthHub to be used as a tool for virtual care. To find out more, please see the protocol or contact the study manager.

The CFHealthHub Intervention

Participants who consent to take part in the study recieve a new chipped nebuliser, or have their existing nebuliser adapted to communicate with CFHealthHub. They will be given a log in to the CFHealthHub system and shown how to use their device and the CFHealthHub website, by a member of their care team. This includes how to turn on and off data sharing with their clinical team. Participants will then be able to use their nebuliser as normal, with the support of CFHealthHub. CFHealthHub automatically collects data on the participants' use of their chipped nebuliser, specifically the time of use and duration of inhalation. The data is stored in the secure CFHealthHub server. The patients CFHH account uses answers to a behaviour change questionnaire based on the COM-B model to tailor the content provided on their CFHH account.

Additionally the CF team will be able to view the adherence data for participants who have data sharing switched on, and identify if any participants could benefit from the behavioural intervention that has been previously tested within the AC. The Data Observatory will not be measuring the effectiveness of this intervention. Instead, CFHealthHub will help facilitate quality improvement projects using data from CFHealthHub about participants adherence and participant's relationship with the team.

CFHealthHub Platform

CFHealthHub is an online portal which displays adherence data and provides behaviour change resources and tools for people with Cystic Fibrosis (PWCF), these tools used alongside trained CF health professionals support changes in patient self-management (nebuliser adherence). It is available on-line via computers, tablets or mobile phones. This agile platform acts as a software development collaborative, whereby patients and staff feedback to software developers at the University of Manchester to iteratively refine and improve CFHealthHub via monthly video conference calls.

Quality Improvement Work

The Data Observatory facilitates quality improvement projects, which act as an intervention within the CF team. These QI projects utilise the Clinical Microsystem methodology developed by the Dartmouth Institute, USA (Nelson, Bataldan and Godfrey, 2007) and adopted by the Sheffield Microsystem Coaching Academy (MCA). The Sheffield MCA (http://www.sheffieldmca.org.uk) approach advocates that complex health systems can be reduced to smaller building blocks called ‘microsystems’ where multidisciplinary teams deliver healthcare to patients. At each microsystem a number of QI projects may occur but the implementation requires the completion of four phases; Assessment, Diagnose, Treatment and Standardise, where tools such as assessment using the 5 P’s (Purpose, Patients, Professionals, Processes, Patterns) process mapping, time series measurements, Plan Do Study Act (PDSA) cycles are utilised until the change idea has been adapted or has become embedded into the microsystem.

Further information can be found by going to the MCA website.

EC Nelson, PB Batalden, MM Godfrey - A clinical microsystems approach, 200


Publications 

2020

Journal Articles

Martin R, Arden M, Porritt J, Wildman M, Naughton F. Investigating the Temporal Relationships between Symptoms and Nebuliser Adherence in People with Cystic Fibrosis: A Series of N-of-1 Observations. Healthcare (Basel). 2020;8(1):22. Published 2020 Jan 21. doi:10.3390/healthcare8010022. Available here.

2019

Journal Articles

Arden MA, Drabble S, O'Cathain A, Hutchings M, Wildman M. Adherence to medication in adults with Cystic Fibrosis: An investigation using objective adherence data and the Theoretical Domains Framework. Br J Health Psychol. 2019;24(2):357‐380. doi:10.1111/bjhp.12357. Available here.

Drabble SJ, O’Cathain A, Arden MA, Hutchings M, Beever D, Wildman M. When Is Forgetting Not Forgetting? A Discursive Analysis of Differences in Forgetting Talk Between Adults With Cystic Fibrosis With Different Levels of Adherence to Nebulizer Treatments. Qual Health Res. 2019;29(14):2119-2131. doi:10.1177/1049732319856580. Available here

Gao J, Arden M, Hoo ZH, Wildman M. Understanding patient activation and adherence to nebuliser treatment in adults with cystic fibrosis: responses to the UK version of PAM-13 and a think aloud study. BMC Health Serv Res. 2019;19(1):420. Published 2019 Jun 24. doi:10.1186/s12913-019-4260-5. Available here

Hind D, Drabble SJ, Arden MA, et al. Supporting medication adherence for adults with cystic fibrosis: a randomised feasibility study. BMC Pulm Med. 2019;19(1):77. doi:10.1186/s12890-019-0834-6. Available here

Hoo ZH, Gardner B, Arden MA, et al. Role of habit in treatment adherence among adults with cystic fibrosis. Thorax. 2019;74(2):197‐199. doi:10.1136/thoraxjnl-2017-211453. Available here.

Hoo ZH, Wildman MJ, Campbell MJ, Walters SJ, Gardner B. A pragmatic behavior-based habit index for adherence to nebulized treatments among adults with cystic fibrosis. Patient Prefer Adherence. 2019;13:283‐294. Published 2019 Feb 13. doi:10.2147/PPA.S186417 Available here

Protocols

Wildman M, Hutchings M, Arden M, O’Cathain A, Drabble S, Walters SJ, et al. Development and evaluation of an intervention to support Adherence to treatment in adults with Cystic Fibrosis: A randomised controlled trial and parallel process evaluation protocol [Internet]. Online Research Data (ORDA). 2018 [cited 2019 Feb 21]. Available here

Conference Abstracts

C. Carolan, M. Lowther, C. Clarke, S. Waterhouse, C. Girling, K. Strowbridge, S. Harrison, F. Edenborough, C. Rachel, M. Wildman. (2019). ePS5.06 Quality improvement within a learning health system: using PDSA cycles to embed a digital behaviour change platform, CFHealthHub, in routine care. Journal of Cystic Fibrosis, 18(1), S52. ECFS 2019. Available here

C. Carolan, C. Clarke, M. Lowther, C. Girling, S. Harrison, F. Edenborough, R. Curley, M Wildman. (2019). P433 Supporting patients to move from rescue to prevention: meeting patients on their own terms - a preliminary evaluation of out of hours adherence telephone support offered to cystic fibrosis patients using the digital health system CFHealthhub. Journal of Cystic Fibrosis, 18(1), S179-S180. ECFS 2019. Available here

C. Clarke, C. Carolan, M. Lowther, S. Waterhouse, K. Strowbridge, S. Harrison, C. Girling, F. Edenborough, R. Curley, M. Wildman. (2019). P432 How physiotherapists improved prescription accuracy for nebuliser treatment: using click analytics from CFHealthHub, a digital adherence system, to monitor quality improvement. Journal of Cystic Fibrosis, 18(1), S179. ECFS 2019. Available here

Dawson, S., Haynes, F., Millward, S., Horton-Smith, C., Parr, L., Barr, H., Saini, G., & Dewar, J. (2019). Identifying the challenges involved in maintaining an accurate record of patient nebuliser prescriptions at a UK adult CF Centre: a quality improvement project. Journal of Cystic Fibrosis, 18(1), S177. ECFS 2019. Available here.

Girling, C., Hind, D., Arden, M.A., & Wildman, M.J. (2019). Developing an implementation strategy for the use of objective adherence data in routine clinical practice: a case study in cystic fibrosis clinics. Implementation Science, 14(Supp 2), 4-5.

Girling, C., Totton, N., Hind, D., Wildman, MJ. (2019). CFHealthHub Data Observatory: A trials within cohort platform for habit formation in Cystic Fibrosis. Presented at Trials Using Cohorts and routine data: Efficacy and Analysis Symposium, 2019. London, United Kingdom.

Hoo, Z. H., et al., (2019). Understanding objective adherence to preventative inhaled therapies at a centre level for quality improvement - a CFHealthHub (CFHH) improvement collaborative study. Journal of Cystic Fibrosis, 18(1), S51-S52. ECFS 2019. Available here.

Whelan P, Stockton-Powdrell C, van Velsen L, Tabak M, Wolf K, Interdisciplinary Perspectives on Connected Health Research: Facilitators and Barriers for Sustainable Platform Development, MedInfo, Lyon, August 2019.

Communications

Arden M. (2019) Health and habits The Psychologist [Internet]. 2019 [cited 2019 Mar 4]. p. 07. Available here.

2018

Journal Articles

Hoo ZH, Coates E, Maguire C, et al. Pragmatic criteria to define chronic pseudomonas aeruginosa infection among adults with cystic fibrosis. Eur J Clin Microbiol Infect Dis. 2018;37(11):2219‐2222. doi:10.1007/s10096-018-3358-8. Available here.

Conference Abstracts

Arden, M.A., Gao, J. Hoo, Z.H, Wildman, M. The Patient Activation Measure and adherence in adults with Cystic Fibrosis: A think-aloud study. BPS Division of Health Psychology Annual Conference, Newcastle, UK, 5th-7th September 2018.

2017

Journal Articles

Tappenden P, Sadler S, Wildman M. (2017). An Early Health Economic Analysis of the Potential Cost Effectiveness of an Adherence Intervention to Improve Outcomes for Patients with Cystic Fibrosis. Pharmacoeconomics. 2017;35(6):647‐659. doi:10.1007/s40273-017-0500-x. Available here.

Conference Abstracts

Arden M, Drabble S, O’Cathain A, Hind D, Hutchings M, Whelan P, et al. (2017). CFHealthHub: The development of a digital intervention to provide feedback on objective nebuliser adherence data for adults with Cystic Fibrosis (CF). Frontiers in Public Health, 3rd UCL Centre for Behaviour Change Digital Health Conference 2017: Harnessing Digital Technology for Behaviour Change. Available here

Arden MA, Hutchings M, Whelan P, Wildman MJ, CFHealthHub group. (2017). Understanding nebuliser adherence in adults with Cystic Fibrosis: comparing high, medium and low adherers. European Health Psychologist, 19(Supp). The European Health Psychologist 2017 Conference. Available here.

Beever DA & Wildman M (2017). A personal reflection on being a co-applicant in the ACtiF study. Research Involvement and Engagement, 3(Supp 1). NIHR Involve Conference 2017. Available here.

Hind D, Maguire C, Cantrill H, O’Cathain A, Wildman M. (2017). EPS2.8 CFHealthHub: complex intervention to support adherence to treatment in adults with cystic fibrosis: external pilot trial. Journal of Cystic Fibrosis, 16(1), S40-S41. ECFS 2017. Available here

Hoo ZH, Curley RE, Campbell SMJ, Wildman MJ. (2017). IPD2.09 Cluster analysis of objective nebuliser adherence data among adults with CF: change in adherence over time and association with clinical outcomes. Journal of Cystic Fibrosis, 16(1), S60-S61. ECFS 2017. Available here.

Hoo ZH, Waterhouse S, Nightingale JA, Dewar J, Allenby M, Haynes F, et al. (2017). 155 CFHealthHub: using Leeds criteria and clinicians’ decision to determine the pseudomonas status among the 64 adults with cystic fibrosis in the two centre CFHealthHub (CFHH) pilot study. Journal of Cystic Fibrosis, 16(1), S105-S106. ECFS 2017. Available here.

Horspool K, Whelan P, Wildman M. (2017). 367 CFHealthHub: iterative co-production of a data feedback platform providing patient level adherence data to multi-disciplinary teams to optimise individual care and centre level adherence data to centre directors allowing benchmarking to enable centre level quality improvement cycles in a 3 centre improvement collaborative. Journal of Cystic Fibrosis, 16(1), S155. ECFS 2017. Available here.

Kirkpatrick S, Arden M, Beever D, Bradley J, Cantrill H, Daniels T, et al. 368 CFHealthHub: development and evaluation of videos incorporating peer description of successful self-management with inhaled therapies in adults with CF used to build self-efficacy to support self-care within the CFHealthHub complex intervention. Journal of Cystic Fibrosis, 16(1), S155-S156. ECFS 2017. Available here.

Whelan P, Hassan L, Fox S, Tempest E. Developing Mobile Applications for Health, Informatics for Health Congress, April 2017.

Whelan, P. Data and mHealth Technologies, Digital Health Outlook, UK and Italy Experiences in a Global Context, Milan, 2017.

2016

Journal Articles

Hoo ZH, Curley R, Campbell MJ, Walters SJ, Hind D, Wildman MJ. (2016). Accurate reporting of adherence to inhaled therapies in adults with cystic fibrosis: methods to calculate "normative adherence". Patient Prefer Adherence. 2016;10:887‐900. doi:10.2147/PPA.S105530. Available here.

Conference Abstracts

Arden MA, Drabble SJ, O’Cathain A, Hutchings M, Wildman M. (2016). WS16.1 ACtiF study: understanding adherence to nebuliser treatment in adults with cystic fibrosis using the Theoretical Domains Framework. Journal of Cystic Fibrosis, 15(1), S26. ECFS 2016. Available here.

Arden MA, Drabble SJ, O’Cathain A, Hutchings M, Wildman M. (2016) Applying the theoretical domains framework to adherence to nebuliser treatment in adults with cystic fibrosis. Eur Heal Psychol [Internet]. 2016 Dec 31 [cited 2017 Jul 12];18(S):689. Available here.

Sadler S, Wildman M, Tappenden P. 267 Cost-effectiveness of a complex adherence intervention to improve prevention in cystic fibrosis by empowering effective self-management: an exploratory health economic evaluation using UK Registry data. Journal of Cystic Fibrosis [Internet], 15(1), S119–S20. ECFS 2016. Available here.

Whelan, P. Using digital platforms to improve the lives of people with chronic conditions: a connected health case study of CFHealthHub, University of Manchester, August 2016.

Whelan, P. Co-producing Digital Platforms to support an Ageing Population, Chengdu, China, July 2016.

Wildman M, Buchan I, Ainsworth J, Whelan, P. CFHealthHub: Complex intervention to support self-management in people with Cystic Fibrosis. Poster for Farr Institute case study. 

2013

Conference Abstracts

C. Hinchliffe1, C. Rose1, M. Wildman1 Metrics that matter: making the invisible visible as adherence support moves a patient from a dependence on unscheduled rescue to planned prevention. ECFS 2013.


Contact us

For all enquiries, please email: cfhh@sheffield.ac.uk


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