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2026
article
OpenAlex
Kristina Staley
Many health research organisations make strong commitments to involvement in their organisational strategies. This commitment is often operationalised via an involvement strategy, and evidenced by high quality, successful involvement within areas such as making research funding decisions, or policy development. One area …
gb
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Accès ouvert
2026
article
OpenAlex
Kristina Staley, Lynn Laidlaw
The involvement of people with lived experience makes research relevant and useful to the people it intends to help. How we conceptualise involvement influences every aspect of our approach to it. Over many years, the authors have sometimes witnessed or directly experienced …
gb
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Accès ouvert
2026
article
OpenAlex
Nicole Gusset, Vanessa Christie-Brown, Claudio Bruno, Peter Claus et autres
Abstract Background Advances in medicines have transformed the outlook for people living with spinal muscular atrophy (SMA), yet many needs remain unmet. As the scientific and clinical environment evolves, aligning research priorities with the lived experience of patients is increasingly recognised as …
it, de, ru, gb, no, be, nl
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Accès ouvert
2026
article
OpenAlex
Vasileios Georgopoulos, Stephanie L. Smith, Daniel F. McWilliams, Carolyn Desforges et autres
Public involvement is standard practice to enhance the quality, equity and impact of musculoskeletal pain research. In this review, we aimed to reflect on our own learning journey across multiple musculoskeletal projects and identify lessons learned from meaningful involvement. We then consider …
gb
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Accès ouvert
2026
article
OpenAlex
Tim Board, Asim Khan, Antony K. Sorial, Hiren Divecha et autres
OBJECTIVES: To identify and prioritise research uncertainties regarding the assessment, management and rehabilitation of patients with problematic hip replacements through a national Priority Setting Partnership (PSP). DESIGN: A national PSP using the James Lind Alliance (JLA) methodology. SETTING: UK. PARTICIPANTS: Patients, carers …
gb, nl
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Accès ouvert
2025
article
OpenAlex
Zachary Nash, Monica Christmas, Toto Gronlund, Jenifer Sassarini et autres
INTRODUCTION: All those born with functioning ovaries will eventually experience menopause, and many will be symptomatic. However, significant gaps in the evidence base for menopause care remain. This National Institute for Health and Care Research James Lind Alliance Menopause Priority Setting Partnership …
us, gb, au, Zambie
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Accès ouvert
2022
article
OpenAlex
Sarah Tyson, Kristina Stanley, Toto Gronlund, Sian Leary et autres
Objective: To identify research priorities of people with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and those who support and care for them.Method: Using the James Lind Alliance’s protocols, online surveys and workshops were held. The first survey asked participants from the …
gb, us
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Accès ouvert
2022
article
OpenAlex
Kristina Staley, Kourosh R. Ahmadi, Karyl Carter, Katherine Cowan et autres
OBJECTIVES: To form a James Lind Alliance (JLA) Priority Setting Partnership (PSP) to determine research priorities related to the cause, diagnosis, treatment and management of pernicious anaemia (PA) from the perspectives of patients, carers and clinicians. DESIGN: The PSP conducted two surveys …
gb
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Accès ouvert
2022
article
OpenAlex
Rhys H. Thomas, Amy Hunter, Lyndsey Butterworth, Catherine Feeney et autres
Primary mitochondrial disorders encompass a wide range of clinical presentations and a spectrum of severity. They currently lack effective disease-modifying therapies and have a high mortality and morbidity rate. It is therefore essential to know that competitively funded research designed by academics …
gb, ch, us
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Accès ouvert
2021
article
OpenAlex
Kristina Staley, Jim Elliott, Derek Stewart, Roger Wilson
Patient and public involvement in research helps to make it more relevant and useful to the end-users. Involvement influences the design, delivery and dissemination of research, ultimately leading to better services, treatments and care. Researchers are therefore keen to involve patients, carers …
gb
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Accès ouvert
2021
article
OpenAlex
Sara Garfield, Aisha Begum, Kah Ling Toh, Anna Lawrence‐Jones et autres
OBJECTIVE: To identify concerns related to the use of medicines for adults with complex needs and explore whether these differed between healthcare professionals and patients/carers, in order to inform development of interventions to increase medication adherence. METHODS: A quantitative secondary analysis of …
gb
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Accès ouvert
2020
article
OpenAlex
Kristina Staley, Sally Crowe, Joanna Crocker, Mary Madden et autres
BACKGROUND: The James Lind Alliance (JLA) supports priority setting partnerships (PSPs) in which patients, carers and health professionals collaborate to identify a Top 10 list of research priorities. Few studies have examined how partnerships plan for the post-prioritisation phase, or how context …
gb, us
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