Research Article
No access
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


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.

Get full access to this article

View all available purchase options and get full access to this article.


Twamley K, Evans J, Wormald R 2011 Why involve consumers in eye health research? Eye 25:969–970.
National Institute for Health Research 2013 Research for Patient Benefit (RfPB) Programme Guidance Information for Applicants.
Gulland A 2011 Welcome to the century of the patient. BMJ 342:d2057.
Department of Health 1999 Patient and Public Involvement in the NHS. Her Majesty's Stationery Office: London.
INVOLVE 2012 Briefing notes for researchers: involving the public in NHS, public health and social care research. INVOLVE, Eastleigh.
Abraham-Nordling M, Bystrom K, Torring O, Lantz M, Berg G, Calissendorff J, Nystrom HF, Jansson S, Jorneskog G, Karlsson FA, Nystrom E, Ohrling H, Orn T, Hallengren B, Wallin G 2011 The incidence of hyperthyroidism in Sweden. Eur J Endocrinol 165:899–905.
Laurberg P, Berman DC, Pedersen IB, Andersen S, Carle A 2012 Incidence and clinical presentation of moderate to severe Graves' orbitopathy in a Danish population before and after iodine fortification of salt. J Clin Endcrinol Metab 97:2325–2332.
Cawood T, Moriarty P, O'Shea D 2004 Recent developments in thyroid eye disease. BMJ 329:385–390.
Wiersinga WM 2012 Quality of life in Graves' ophthalmopathy. Best Pract Res Clin Endocrinol Metab 26:359–370.

Information & Authors


Published In

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


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


Request permissions for this article.




    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.


    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.

    Metrics & Citations



    Export citation

    Select the format you want to export the citations of this publication.

    View Options

    Get Access

    Access content

    To read the fulltext, please use one of the options below to sign in or purchase access.

    Society Access

    If you are a member of a society that has access to this content please log in via your society website and then return to this publication.

    Restore your content access

    Enter your email address to restore your content access:

    Note: This functionality works only for purchases done as a guest. If you already have an account, log in to access the content to which you are entitled.

    View options


    View PDF/ePub

    Full Text

    View Full Text







    Copy the content Link

    Share on social media

    Back to Top