Overview

Research Focus:  Patient reported measures including patient centred outcomes (PCO) and experience measures (PREMs), using patient-centred and mixed methodological approaches. My special interest in interstitial lung diseases (ILDs) originated in the Dyspnea-12 study, 2008 and strengthend through collaboration on the PROFILE study (NCT01134822), a national longitudinal observational study to assess potential biomarkers to predict outcomes for people with Idiopathic Pulmonary Fibrosis (IPF).

Awarded a competitive NIHR CDRF in 2012 I completed a part time PhD at Imperial College developing and testing a patient-reported outcome measure for patients with IPF (IPF-PROM © Imperial College London). The 12-item IPF-PROM has been validated in UK, Europe and US IPF populations; it has been translated into Danish, German, Spanish and Portuguese. Website in development - ifpprom.com check back for updates

I work collaboratively nationally and internationally in the ILD specialism and locally lead a Supporting Self-management in ILD research group supporting research associates, research fellows and interns working on range of projects relating to ILD. 

Funded through NHSE I retain clinical expertise as a senior clinical fellow in the SW peninsular specialist commissioned ILD service. I am seconded (0.4wte) to the NIHR West England CRN where I have a regional and national leadership role, working closely with the NIHR NMO, to build research capability and capacity for NMAHPS.

See Research tab for further information and supervision offered.

Qualifications

• PhD Respiratory Medicine | Imperial College London

• MSc (distinction) | Advanced Practice & Clinical Research 
• BSc (hons) Public Health | Brunel University 
• BSc (hons) Professional practice and research methods
• Post Graduate Certificate in Education (distinction) 
• Post Graduate Certificate in Family Therapy & Systemic Practice
• Certificate in Tropical Diseases and Laboratory Techniques | LSHTM

Career

Whilst retaining an honrorary contract at the University of Exeter effective as of 1st Janaury 2024 I am relocating to take up a position as Chair at the University of Birmingham, College of Medical & Dental Sciences.

Links

• Twitter
• ORCID
• ResearchGate

Research group links

• Institute of Health Research

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Research

Research interests

I am a mixed methods researcher with experience of consensus approaches and psychometrics. I collaborate on studies relating to fibrotic lung conditions including all interstitial lung disease entities, patient-centeredness and supported self-managment. I maintain interest in caregiver burden and non-pharmacological approaches to palliation of symptoms with a core focus on measuring what matters to patients so that outcomes and experiences, particularly PROMs and PREMs are authentic and meaningful.

Patient-centred approaches include working with patients as research partners from conception through to study design, delivery and co-authorship of outputs.  I am an active member of the University of Exeter Patients in Collaboration for pulmonary fibrosis research group (EPIC) who guide collective and interdisciplinary research endeavours, and with external patient partners.

http://orcid.org/0000-0002-0468-353

I offer pre-doctoral, doctoral and post-doctoral supervision

Current projects include:

Lizzie Grillo: 'The Physiotherapy Assessment of Breathing Pattern Dysfunction' (NIHR CDRF)

Carita Bramhill: 'Living beyond a diagnosis of idiopathic Pulmonary Fibrosis: A mixed method exploration of patient related experience and unmet healthcare needs' (Ussher scholarship)

Malik Althobiani : 'Home monitoring of physiology and symptoms to detect Interstitial Lung Disease exacerbations and progression'

Adine Adonis : 'Optimising measurement of progression and wellbeing of people with HTLV Associated Myelopathy and Asymptomatic Carriers' (NIHR PCAF)

Jessica Mandizha & Dr Joe Lanario: 'Qualitative exploration of experiences of home-monitoring in peolpe living with Interstitial Lung Disease' (NIHR CRN SWP)

Research projects

Active Studies as Co-investigator 

• Research Council, NIHR, British Academy & Royal Society MRC CiC | Aug 2022 £26k
• Project: Diagnosis and disease monitoring of chronic lung disease with novel digital acoustic technologies - £26k (co-applicant). University of Exeter.

• NHSx Digital Health Partnership Award Oct 2021 - £196k.
• Project: Respiratory remote monitoring programme Royal Devon & Exeter NHS Trust & Guy’s & St Thomas’ NHS Foundation Trust. Co-applicant

• NIHR & UKRI July 2020 - £630K
• Project:The development, testing and evaluation of a COVID-19 fundamental nursing care protocol ISRCTN 13177364 (co-applicant). University of Exeter.

• RCF (RD&E) award March 2021 - £14.5k
• Project:  STARSHIP I: Study of Telomeres and Role of Sex Hormones in Pulmonary Fibrosis Stage I (Feasibility) PI: Anna Duckworth. University of Exeter.

International 

• Co-investigator (2020): Validation of the Mawdsley Questionnaire in Systemic Sclerosis-associated calcinosis. Tulane University | New Orleans. (Recruiting) PI: LA Saketkoo
• Co-investigator: (2019) Compassion Cultivation Skills Training (CCT) in Medicine: Controlled Skill-building Intervention Trial in Pulmonary Critical Care (PCC) Fellows. Louisiana State University | New Orleans. (in evaluation) PI: LA Saketkoo

Studies now Closed

• Chief-Investigator: (2019) An observational study to explore the validity and appropriateness of the generic Patient Activation Measure (PAM) in a population diagnosed with Interstitial Lung Disease. Imperial Health Charity / PF Trust UK  / London. £59k
• Co-investigator: (2018/9) An open label phase IV, multicentre, international, interventional study to evaluate the effect of diet on gastrointestinal adverse events in patients with IPF treated with Pirfenidone (MADIET) Sponsor: Biomedical Research Institute, Barcelona 
• Co-investigator: (2016/18) Development and Testing of a Patient Reported Experience Measure in Idiopathic Pulmonary Fibrosis (IPF-PREM study) utilising patient centred and mixed methodologies. Imperial college healthcare NHS Trust. 
• Co-investigator / UK CI : (2015/16) Observational study of the effect of Pirfenidone on cough in patients with idiopathic pulmonary fibrosis. Sponsor: ERASMUS / Netherlands
• Chief Investigator: (2013/18) Development; Testing & Validation of a Patient Reported Outcome measure in Idiopathic Pulmonary Fibrosis (IPF-PROM study). Multicentre. Sponsor Imperial College NIHR CDRF £240k
• Research Associate: (2010/16) A prospective, UK multicentre, observational idiopathic pulmonary fibrosis cohort study (PROFILE): Royal Brompton & Harefield NHS Trust: NCT01110694 

Research grants

• 2021 NIHR
  NIHR Clinical Research Network South West Peninsula
• 2021 NHS
  Research Capacity Funding
• 2020 NIHR
  National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI)

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External Engagement and Impact

Awards

Professional:

• ILD Interdisciplinary Network 2023 Innovation in Digital Technology Award
• American Thoracic Society Fellow 2020 School 

Internal:

• University of Exeter Above and Beyond Award 2023

Patient & Public Involvement:

• Irish Healthcare Awards 2019 Patient Organisation Project of the Year. Commendation for World Café Event on Palliative Care and Planning for the Future (ILFA)

Committee/panel activities

European Respiratory Society:

• College of Experts member
• Taskforce member
  • ERS TF2022-16 - Management of patients with IPF &  LungCancer 
  • ERS TF-2021-08 Guideline on symptom management in advanced lung disease 
• Reviewer - abstracts / awards & CTF programme 

Advancing ILD Research (AIR Europe): Faculty member 

JLA: Progressive Pulmonary Fibrosis research priority setting partnership (PPF PSP) 2020/2

         https://www.jla.nihr.ac.uk/priority-setting-partnerships/progressive-pulmonary-fibrosis/ 

PPIE:

• European Pulmonary Fibrosis Federation EU-IPFF Scientific Advisory board member 
• Exeter Patients in Collaboration for Pulmonary Fibrosis Research (EPIC PF) group member

Terms of office served

• ILD Interdisciplinary National Network Chair-elect: 2017 – 2019
• American Thoracic Society Program Committee Chair-elect: 2018 – 2019
• American Thoracic Society  Members in Transition and Training Committee 2017-2018
• American Thoracic Society Awards Committee member 2017-19

External positions

ILD Podcast Series Host: 

ILD Academy Spotlight Podcasts | Podcast on Spotify

ILD Academy Spotlight Podcasts on Apple Podcasts

The ILD Academy ‘Spotlight Podcasts’  2022 feature prominent members of the UK and Ireland ILD community. Sponsored by Boehringer Ingelheim the podcasts aim to shine a spotlight on the great work being done around the country, and break down some of the challenges facing us in delivering excellent care to our patients.

Invited lectures

Key selected contemporary talks

1. 'Managing wellbeing in ILD'. In: Mini Short Course: Part 1 Supportive Therapies in Interstitial Lung Disease: It’s Not Just About Anti-fibrotics: British Thoracic Society Summer Meeting June 2023
2. 'Creating a Thinking Environment: A novel approach to successful mentoring'. In: ILD Interdisciplinary Network National Conference, Birmingham / UK Oct 2022
3.  'ILD: Progressive fibrosis and Anti-fibrotic Treatment', In: Respiratory Professional Care, NEC, Birmingham /UK Oct 2022
4. 'Which follow-up strategies relate to cognitive, psychological and quality-of-life consequences?' In: Clinical case discussion: ERS statement on long COVID-19 follow-up. European Respiratory Society Webinar  https://www.ersnet.org/ers-respiratory-channel/clinical-case-discussion-ers-statement-on-long-covid-19-follow-up/  Apr 2022
5.  “Home spirometry to support self-management of ILD” In: Role of home spirometry and wearable devices in digital health Symposium; The Australia & New Zealand Society of Respiratory Science and The Thoracic Society of Australia and New Zealand (ANZSRS/TSANZ), Annual Scientific Meeting for Leaders in Lung Health & Respiratory Science. Apr 2022
6. 'Patient-reported measures in ILD'. In: Respiratory Nurses SIG Symposium TSANZ Annual Scientific Meeting Apr 2022
7. 'CTD-ILD: what is really relevant for our patients?' In:  Prof. Dr. Jules van den Bosch Symposium VII, St. Antonius ILD Centre, Nieuwegein. Netherlands Jan 2019
8. 'Palliative care and end of life management for IPF patients'. In: Fergus Goodbody Memorial Lecture & Respiratory Masterclass; Royal College of Physicians Ireland  https://www.youtube.com/watch?v=Tcy3j5H7HMg March 2018

Key selected contemporary sessions Chaired: 

• British Thoracic Society Winter Meeting  | London 2022 |  Chair:Spoken Session
• Advancing IPF Research Autumn Meeting | Basel | Switerland 2022 | Co-Chair Panel Discussion 

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Teaching

https://www.exeter.ac.uk/postgraduate/courses/medicine/lcrd/ 

Modules

2023/24

• HPDM149Z - Integrity and Leadership in Research for Health and Healthcare

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Office Hours:

Please note my PG teaching day is Tuesday 08:30 - 17:30h

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