The first UK national blepharospasm patient and public involvement day; identifying priorities

Murta, Fabíola; Waxman, Jacob; Skilton, Andrew; Wickwar, Sadie; Bonstein, Karen; Cable, Richard; Clipston, Jane; Bates, Alan; Mattocks, Rea; Shelley, Jane; Mccullough, Patricia; Surry, Marc; Matthews, Josie; Worsfold, Stephen; Lorenzano, Daniele; Jayaprakasam, Anuradha; Azzam, Shirin Hamed; Shafi, Fariha; Kwong, Qiang; Koutroumanaos, Nikolas; Manta, Alexandra; Negretti, Guy S.; Haridas, Anjana; Ezra, Daniel G.

doi:10.1080/01676830.2019.1657469

Cited by 4 publications

(1 citation statement)

References 11 publications

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“…Our challenges align with some of the research needs outlined across the seven areas of emphasis in the 2021 Strategic Plan of the US National Eye Institute, particularly the area of public health and disparities. 29 Smaller patient-focused exercises have been done for specific conditions not included in our global list, such as retinoblastoma in Canada, 30 age-related macular degeneration in the USA, 31 and herpes simplex keratitis 32 and blepharospasm 33 in the UK.…”

Section: Discussionmentioning

confidence: 99%

Grand Challenges in global eye health: a global prioritisation process using Delphi method

Ramke

Evans

Habtamu

et al. 2022

The Lancet Healthy Longevity

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Summary Background We undertook a Grand Challenges in Global Eye Health prioritisation exercise to identify the key issues that must be addressed to improve eye health in the context of an ageing population, to eliminate persistent inequities in health-care access, and to mitigate widespread resource limitations. Methods Drawing on methods used in previous Grand Challenges studies, we used a multi-step recruitment strategy to assemble a diverse panel of individuals from a range of disciplines relevant to global eye health from all regions globally to participate in a three-round, online, Delphi-like, prioritisation process to nominate and rank challenges in global eye health. Through this process, we developed both global and regional priority lists. Findings Between Sept 1 and Dec 12, 2019, 470 individuals complete round 1 of the process, of whom 336 completed all three rounds (round 2 between Feb 26 and March 18, 2020, and round 3 between April 2 and April 25, 2020) 156 (46%) of 336 were women, 180 (54%) were men. The proportion of participants who worked in each region ranged from 104 (31%) in sub-Saharan Africa to 21 (6%) in central Europe, eastern Europe, and in central Asia. Of 85 unique challenges identified after round 1, 16 challenges were prioritised at the global level; six focused on detection and treatment of conditions (cataract, refractive error, glaucoma, diabetic retinopathy, services for children and screening for early detection), two focused on addressing shortages in human resource capacity, five on other health service and policy factors (including strengthening policies, integration, health information systems, and budget allocation), and three on improving access to care and promoting equity. Interpretation This list of Grand Challenges serves as a starting point for immediate action by funders to guide investment in research and innovation in eye health. It challenges researchers, clinicians, and policy makers to build collaborations to address specific challenges. Funding The Queen Elizabeth Diamond Jubilee Trust, Moorfields Eye Charity, National Institute for Health Research Moorfields Biomedical Research Centre, Wellcome Trust, Sightsavers, The Fred Hollows Foundation, The Seva Foundation, British Council for the Prevention of Blindness, and Christian Blind Mission. Translations For the French, Spanish, Chinese, Portuguese, Arabic and Persian translations of the abstract see Supplementary Materials section.

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Section: Discussionmentioning

confidence: 99%

Grand Challenges in global eye health: a global prioritisation process using Delphi method

Ramke

Evans

Habtamu

et al. 2022

The Lancet Healthy Longevity

View full text Add to dashboard Cite

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How patient/public involvement impacts the research journey – an overview of the visual impairment research field

Ames,

Matthews,

Reynolds

et al. 2023

Open Res Europe

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Importance – Optimized communication between patients and public, specifically the visually impaired (VI) and VI researchers, is vital for effective patient/public involvement (PPI) in health research. Objectives - We reviewed evidence outlining effective bidirectional communication strategies in research that improve connectivity between researchers and the public, with specific reference to visual impairment perspectives. Evidence review - In health research, a disconnect exists between research outcomes and informing patients and public about research advances and novel pre-clinical research, an interaction that is fundamental for mutual benefit. This creates barriers between patients or service-users and the researcher, as researchers are perceived to have higher level technical knowledge but limited know-how of the real-world experience of service users that might impact on the translation of their research. Findings - Active PPI is endorsed by funding bodies/agencies to facilitate proactive and productive engagement between service users and researchers. Effective communication strategies/tools can help researchers facilitate this engagement. Conclusions and relevance - PPI inception into mainstream research is protracted but contemporary communication strategies can effectively overcome these issues. We strongly advocate that pre-doctoral students receive PPI training at early career stages, and that patients and public have access to similar training, while Principal Investigators (PIs) are key actors ensuring PPI becomes mainstream in health research.

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Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study

Aguayo¹,

Goetzinger²,

Scibilia³

et al. 2021

J Med Internet Res

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Background Patient and public involvement (PPI) in research aims to increase the quality and relevance of research by incorporating the perspective of those ultimately affected by the research. Despite these potential benefits, PPI is rarely included in epidemiology protocols. Objective The aim of this study is to provide an overview of methods used for PPI and offer practical recommendations for its efficient implementation in epidemiological research. Methods We conducted a review on PPI methods. We mirrored it with a patient advocate’s viewpoint about PPI. We then identified key steps to optimize PPI in epidemiological research based on our review and the viewpoint of the patient advocate, taking into account the identification of barriers to, and facilitators of, PPI. From these, we provided practical recommendations to launch a patient-centered cohort study. We used the implementation of a new digital cohort study as an exemplary use case. Results We analyzed data from 97 studies, of which 58 (60%) were performed in the United Kingdom. The most common methods were workshops (47/97, 48%); surveys (33/97, 34%); meetings, events, or conferences (28/97, 29%); focus groups (25/97, 26%); interviews (23/97, 24%); consensus techniques (8/97, 8%); James Lind Alliance consensus technique (7/97, 7%); social media analysis (6/97, 6%); and experience-based co-design (3/97, 3%). The viewpoint of a patient advocate showed a strong interest in participating in research. The most usual PPI modalities were research ideas (60/97, 62%), co-design (42/97, 43%), defining priorities (31/97, 32%), and participation in data analysis (25/97, 26%). We identified 9 general recommendations and 32 key PPI-related steps that can serve as guidelines to increase the relevance of epidemiological studies. Conclusions PPI is a project within a project that contributes to improving knowledge and increasing the relevance of research. PPI methods are mainly used for idea generation. On the basis of our review and case study, we recommend that PPI be included at an early stage and throughout the research cycle and that methods be combined for generation of new ideas. For e-cohorts, the use of digital tools is essential to scale up PPI. We encourage investigators to rely on our practical recommendations to extend PPI in future epidemiological studies.

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The first UK national blepharospasm patient and public involvement day; identifying priorities

Cited by 4 publications

References 11 publications

Grand Challenges in global eye health: a global prioritisation process using Delphi method

Grand Challenges in global eye health: a global prioritisation process using Delphi method

How patient/public involvement impacts the research journey – an overview of the visual impairment research field

Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study

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