Understanding what aspects of Parkinson’s disease matter most to patients and families by Jennifer R. Mammen, Mirinda Tyo, Joyce Cadorette, Jamie L. Adams, Yuge Xiao, Diane Stephenson, Claire Bale

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Developing a Preliminary Conceptual Framework for Guidelines on Inclusion of Patient Reported-Outcome Measures (PROMs) in Clinical Quality Registries by Ruseckaite R, Maharaj AD, Krysinska K, Dean J, Ahern S

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Patient Power: A feasibility study on the impact of providing a bedside notepad to encourage patients to ask questions following surgery by Breanna Wright, Justin Aylward, Sharon Allsop, Alyse Lennox, Nicholas Faulkner, Peter Bragge

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Giving patients, families and staff a reliable voice in acute care: Expert guidance for implementation of Martha’s Rule in UK hospitals by John Welch, Jane Murkin, Eirian Edwards, Matthew Inada-Kim, Christian Subbe

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Understanding the Patient Experience with Twice-Nightly Sodium Oxybate Therapy for Narcolepsy: A Social Listening Experiment by Maria Picone, Frederik Ascencion, Matthew Horsnell, Enming Zhang, Lauren Dougherty, Christopher DeFelice, Maurice Flurie, Rachelle Cook, Anne Marie Morse, Luis E. Ortiz, E. Robert Wassman, Jennifer Gudeman

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Another Rush to Judgement: The Imaginary Worlds of ICER and Recommendations in Duchenne Muscular Dystrophy by Paul Langley

Subjects: “…Duchenne muscular dystrophy (DMD), ICER pseudoscience, patient voice, caregiver voice…”
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Editorial: Pandemic-driven telehealth uptake: the missing healthcare provider, system and patient voices by Janet Michel, Janet Michel, Mary Kawonga, Harvey Rubin

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Valuing patients’ high unmet need to drive innovative therapies for inherited retinal degenerations: insights from the RIWC 2024 workshop on value by Nabin Paudel, Avril Daly

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Patient Power Revolution in Multiple Sclerosis: Navigating the New Frontier by David Yeandle, Peter Rieckmann, Gavin Giovannoni, Nektaria Alexandri, Dawn Langdon

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The Canadian Breast Cancer Symposium 2023 Meeting Report by Tulin Cil, Jean-François Boileau, Stephen Chia, MJ DeCoteau, Katarzyna J. Jerzak, Anne Koch, Nancy Nixon, May Lynn Quan, Amanda Roberts, Christine Brezden-Masley

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Listening as medicine: A thematic analysis by Rachel Kishton, Heta Patel, Divya Saini, Jeffrey Millstein, Aaron Levy

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Nonsense on Stilts – Part 1: The ICER 2020-2023 Value Assessment Framework for Constructing Imaginary Worlds by Paul Langley

Subjects: “…ICER, imaginary claims, Rasch model, measurement error, unnecessary distraction, nonsense QALYs, ignoring the patient voice…”
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Partnering with patients to design a prehabilitation program for optimizing the patient experience through general surgery by Jacqueline Francis-Coad, Dale Edgar, Caroline Bulsara, Alix Barrett-Lennard, Kristine Owen, David Fletcher, Fiona Wood, Anne-Marie Hill

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Commissioning for long-term conditions: hearing the voice of and engaging users – a qualitative multiple case study by Stephen Peckham, Patricia Wilson, Lorraine Williams, Jane Smiddy, Sally Kendall, Fiona Brooks, Joanne Reay, Douglas Smallwood, Linda Bloomfield

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More Unnecessary Imaginary Worlds - Part 1: The Institute for Clinical and Economic Review’s Evidence Report on Janus Kinase (JAK) Inhibitors in Rheumatoid Arthritis by Paul Langley

Subjects: “…Rheumatoid Arthritis (RA), Janus Kinase (JAK) Inhibitors, ICER pseudoscience, unnecessary distraction, patient voice, Rasch Measurement Theory (RMT)…”
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Concern for the patient’s experience comes of age by Irwin Press

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Patients’ voices from music therapy at a South African psychiatric hospital by Carol Lotter, Werdie van Staden

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Creating person-al space for unspoken voices during diagnostic medical imaging examinations: a qualitative study by Chandra Rekha Makanjee, Anne-Marie Bergh, Deon Xu, Drishti Sarswat

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