Five-year Strategy for Patient and Public Involvement and Engagement (2017 to 2022)
Below is an outline of our joint Biomedical Research Centre and Clinical Research Facility five-year strategy for the involvement and engagement of patients and the public (PPIE) in research.
Our mission is to involve patients and/or representatives from relevant public charitable bodies in every aspect of the work of our Centre.
This strategy builds on the success and learnings we have gained over the last decade. Discussions with the public and with patients (public contributors) as well as with researchers and clinicians across our Moorfields, UCL and NIHR partnerships and beyond have informed our strategy. This strategy also aligns with national strategies and developments in PPIE including those from INVOLVE (the national coordinating centre for public engagement) and the NIHR. This strategy will develop and be refined further as we build deeper relationships with public contributors, researchers and clinicians; and as we establish new external networks, partnerships and collaborations. This will help to ensure that our strategy is informed through shared experiences, informed discussions and best practices to enable us to respond to changes in need.
Over this five year term of our BRC, PPIE forms part of one of our new crosscutting themes Patient and Public Involvement/Engagement and Clinical Studies Development. As one of our BRC themes, PPIE will be a set agenda item for all of our research management and strategy meetings. In addition to our PPIE strategy and annual reporting of PPIE to the NIHR, our PPIE programme now benefits from the same level of strategic leadership, evaluation and impact assessment as our other research-based themes. This will improve its effectiveness and reach across both Moorfields Eye Hospital and the UCL Institute of Ophthalmology.
Our PPIE Aims
Optimise the alignment of our research to the needs of patients and those at risk of eye disease
Increase active involvement of patients and/or representatives from relevant charitable bodies in the design, management and reporting of all new clinical trials and other studies involving patients
Break down barriers to broaden participation in biomedical research
Open access to research at the earliest moment of interaction with our hospital
Our PPIE Objectives
Drive internal culture change among those with a role in research by raising awareness of and evidencing the value of patient and public involvement in research as a core component of research design and methodology
Educate and break down perceived barriers with external audiences around what research is and how patients and the public can be involved
More tightly embed PPI within BRC-CRF governance and make it easier for researchers to include active PPI in the majority of studies through the collation of best practices and experiences from patients/carers, public and peers
For those who are eligible, we will make information on how to participate in research more accessible
Our full PPIE strategy can be downloaded from Related documents at the top of this page.
For more information on our PPIE strategy please contact Andi Skilton, PPIE Senior Research Associate Lead at firstname.lastname@example.org.
What is PPI?
This presentation has been developed to support with involving patients and the public in research. It provides:
- - Information on what is meant by PPI in health research;
- - Things to think about and timelines to aid in PPI planning;
- - An overview on how PPI is conducted at our site and what support is available to researchers at Moorifelds Eye Hopsital and the UCL Institute of Ophthalmology;
- - Links to helpful information, support and resources available from other organisations.
We hope you will find this a useful introduction and guide to support your PPI work.
The PPI work we are doing is helping to bring together patients and the public and involve them in setting research priorities and informing the design and delivery of sight-loss and vision research for greater patient benefit.
Our PPI work has been included in a number of papers published in internationally recognised medical and research journals. Click on the titles below to be taken to the relevant paper:
Chopra, R., et al. (2017). "Human Factor and Usability Testing of a Binocular Optical Coherence Tomography System." Translational Vision Science & Technology. 6:(4): 16
Cammack, J., et al. (2016). "Psychophysical measures of visual function and everyday perceptual experience in a case of congenital stationary night blindness." Clinical Ophthalmology. 10: 1593-1606.
Bunce, C., et al. (2016). "Ophthalmic statistics notes 8: missing data-exploring the unknown." British Journal of Ophthalmology. 100(3): 291-4.
Bunce, C., et al. (2015). "Considerations for randomizing 1 eye or 2 eyes." JAMA Ophthalmology. 133(10): 1221.
Pasu, S., et al. (2015). "PIMS (Positioning In Macular hole Surgery) trial–a multicentre interventional comparative randomised controlled clinical trial comparing face-down positioning, with an inactive face-forward position on the outcome of surgery for large macular holes: study protocol for a randomised controlled trial." Trials. 16(1): e009463.
Kotecha, A., et al. (2015). "Qualitative investigation of patients’ experience of a glaucoma virtual clinic in a specialist ophthalmic hospital in London, UK." BMJ Open. 5(12): e009463.
Perros, P., et al. (2015). "Future Research in Graves' Orbitopathy: From Priority Setting to Trial Design Through Patient and Public Involvement." Thyroid. 25(11): 1181-84.
Smith, H. B., et al. (2014). "Description and evaluation of the first national patient and public involvement day for thyroid eye disease in the United Kingdom." Thyroid. 24(9): 1400-06.
Rowe, F., et al. (2014). "The Sight Loss and Vision Priority Setting Partnership (SLV-PSP): overview and results of the research prioritisation survey process." BMJ Open. 4(7): e004905.
Bunce, C., et al. (2014). "Ophthalmic statistics notes 1: unit of analysis." British Journal of Ophthalmology. 98(3): 408-12.
Koutroumanos, N., et al. (2013). "Bringing together patient and specialists: the first Birdshot Day." British Journal of Ophthalmology. 97(5): 648-52.