Dr Anne-Marie Russell

About me:

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.

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)

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.