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Patient-centricity with digital real-world evidence

When it comes to drug discovery there is a wealth of insight to be gained from the patient community. Involving patients in the design and development of real-world evidence studies, which in turn complement traditional clinical trials by demonstrating patients’ lived experience of the condition and its treatments, can be a powerful means of emphasizing patient-centricity in drug development. In this article, the authors explore the technicalities of engaging patients in real-world evidence studies.

Tips of the trade: delivering patient-centricity with digital real-world evidence

Monnickendam G, Quinn C, Amini F, Larkin M, Cannon D (ISPOR Value & Outcomes Spotlight, 2022)

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Authors

Author profiles can be found on our Who we a re page.

Casey Quinn

Fatemeh Amini

Mark Larkin

September 8, 2025
Publications

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Supporting evidence-generation with expertise

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What is the consistency of response to rimegepant at a group level in the acute treatment of migraine in UK adult patients? Protocol for a real-world, patient-centred study

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Assessment of stable chronic bronchitis improvement with adjunctive long-term Mucinex® use via the cough and sputum assessment questionnaire (CASA-Q)

Divel C, Borecka O, Llewellyn S, Spangenthal S (CHEST, 2025)

Adjunctive long-term use of Mucinex® leading to improvement in stable chronic bronchitis and patient’s quality of life: A case report.

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Real-world use of Vitaccess Real™ platform to assess quality of life impact with long-term use of Mucinex® in stable chronic bronchitis

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Multiple myeloma caregiver costs and disabilities data for economic modelling and HTA submissions

Alsawady M, Tarnowska R, Kudlac A, Vincent S, Melrose D, Lied-Lied A (ISPOR Europe, 2025)

A targeted review of caregiver experiences of CAR-T therapy in ambulatory settings

Ringland C, Bagshaw E, Llewellyn S, Pugh G (ISPOR Europe, 2025)

Extrapulmonary disease burden and impact of cystic fibrosis (CF) on productivity in people with CF (pwCF) aged >12 years not treated with CF transmembrane conductance regulator modulators (CFTRm): interim analysis (IA) of the HUBBLE study

Elborn S, Mainz J, Abbott J, Carr S, Sole A, Costa S, Ganapathy V, Arteaga-Solis E, Liu J, Yuan J, Thorat T, Llewellyn S, Larkin M, De Iorio F, Kaplowitz H (ITS Annual Scientific Meeting, 2021)

Patient‑ and Caregiver‑Reported Burden of Transfusion‑Dependent β‑Thalassemia Measured Using a Digital Application

Paramore C, Levine L, Bagshaw E, Ouyang C, Kudlac A, Larkin M (Springer Nature’s, The Patient – Patient-Centered Outcomes Research, 2020)

Patient-reported burden of transfusion-dependent Beta-Thalassemia in the USA and UK measured using a digital app

Paramore C, Helfer J, Levine L, Kousoulakou H, Larkin M (ISPOR EU, 2019)

Deprivation and access to care among patients with melanoma in the UK

Quinn C, Larkin M, Jacobs I, Kandola S, Smoyer K (ISPOR EU, 2022)

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Advanced patient-centric, science-driven research

Observational Studies

Qualitative Research

Registries

Health Utilities & Preference Studies

Quantitative Research

Analytics & Data Visualization

Patient-reported Outcomes

Translation & Linguistic Validation

Publication Support

Patient & Caregiver Burden Studies

Publications

Blogs

Case studies

White papers

Webinars

Study datasets

Patient-centricity with digital real-world evidence

Tips of the trade: delivering patient-centricity with digital real-world evidence

Mark Larkin

Supporting evidence-generation with expertise

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