Research Article
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Published Online: 28 August 2014

Description and Evaluation of the First National Patient and Public Involvement Day for Thyroid Eye Disease in the United Kingdom

Publication: Thyroid
Volume 24, Issue Number 9

Abstract

Background: To ensure appropriate patient-focused outcomes, the National Institute for Health Research (NIHR) in the United Kingdom has made consultation with patients, caregivers, and the public a prerequisite to providing research funding. One method of encouraging engagement with research is through patient and public involvement (PPI) events. We describe the planning and implementation of a PPI day for thyroid eye disease (TED) and evaluate our own event using feedback from delegates.
Methods: The Moorfields NIHR Biomedical Research Centre, in partnership with TED charities, arranged the first national PPI day for TED in the United Kingdom. The event included didactic lectures; pre-event and postevent questionnaires; an exhibition with stalls, posters, and an interactive voting wall to determine research priorities; focus group sessions to explore patient experiences and perceptions of research; and one-on-one interviews recording individual patient stories.
Results: Of 100 attendees, 70 completed questionnaires. When asked whether the day had provided what they wanted, 48 of 52 (92%) said yes; 3 of 52 (6%) said no. Overall 6 of 52 (12%) rated the event as good; 28 of 52 (54%), very good; and 18 of 52 (34%), excellent. Thirty-six patients registered to participate in further research, identifying “finding the cause for TED,” “improving psychological support,” and “achieving a better cosmetic outcome” as key priorities. A poor understanding of TED among medical professionals was a common complaint.
Conclusions: The event received positive feedback and achieved its key objective of engaging patients, researchers, and clinicians in a two-way discussion about research priorities and improved study design. An invaluable insight was gained into patients' needs for a better quality of life, and we have demonstrated that important data can be captured from such events, providing an evidential basis consistent with the NIHR principles of patient-centered research.

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Published In

cover image Thyroid®
Thyroid
Volume 24Issue Number 9September 2014
Pages: 1400 - 1406
PubMed: 24936890

History

Published in print: September 2014
Published online: 28 August 2014
Published ahead of print: 21 July 2014
Published ahead of production: 17 June 2014

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    Authors

    Affiliations

    Henry B. Smith
    Moorfields Eye Hospital, London, United Kingdom.
    Carol Porteous
    The Moorfields NIHR Biomedical Research Centre & UCL Institute of Ophthalmology, London, United Kingdom.
    Catey Bunce
    The Moorfields NIHR Biomedical Research Centre & UCL Institute of Ophthalmology, London, United Kingdom.
    Karen Bonstein
    The Moorfields NIHR Biomedical Research Centre & UCL Institute of Ophthalmology, London, United Kingdom.
    Janis Hickey
    British Thyroid Foundation, Harrogate, United Kingdom.
    Colin M. Dayan
    Institute of Molecular & Experimental Medicine, Cardiff University School of Medicine, Cardiff, Wales, United Kingdom.
    Gill Adams
    Moorfields Eye Hospital, London, United Kingdom.
    Geoff E. Rose
    Moorfields Eye Hospital, London, United Kingdom.
    Daniel G. Ezra
    Moorfields Eye Hospital, London, United Kingdom.
    The Moorfields NIHR Biomedical Research Centre & UCL Institute of Ophthalmology, London, United Kingdom.

    Notes

    Address correspondence to:Henry Smith, MA, FRCOphthMoorfields Eye HospitalAdnexal Service162 City RoadLondon EC1V 2PDUnited Kingdom
    E-mail: [email protected]

    Author Disclosure Statement

    No competing financial interests exist. DGE, KB and GER acknowledge financial support from the Department of Health through the award made by the National Institute for Health Research to Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology for a Biomedical Research Centre for Ophthalmology. The views expressed in this publication are those of the authors and not necessarily those of the Department of Health.

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