June 2022
Volume 63, Issue 7
Open Access
ARVO Annual Meeting Abstract  |   June 2022
Educate. Participate. Innovate: Training and empowering patients living with rare, degenerative retinal diseases as active stakeholders in medicines research, development, and policy.
Author Affiliations & Notes
  • Fiona Waters
    Retina International, Ireland
  • Footnotes
    Commercial Relationships   Fiona Waters None
  • Footnotes
    Support  Unrestricted Education Grant
Investigative Ophthalmology & Visual Science June 2022, Vol.63, 1078 – A0173. doi:
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      Fiona Waters; Educate. Participate. Innovate: Training and empowering patients living with rare, degenerative retinal diseases as active stakeholders in medicines research, development, and policy.. Invest. Ophthalmol. Vis. Sci. 2022;63(7):1078 – A0173.

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      © ARVO (1962-2015); The Authors (2016-present)

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Abstract

Purpose : There is an increasing demand for patient involvement in medical innovation at research, industry, and policy levels. Retina International (RI) has observed an unmet need amongst its community, where the knowledge and skills to effectively engage in an advisory or advocacy capacity are not developed. As the demand for patient expertise increases, so must our panel of informed patient advocates.

Methods : RI developed a 3-month training programme. 11 globally representative trainees, consisting of 9 patient representatives and 2 PhD candidates were selected following application. The curriculum was co-created with subject matter experts (SMEs) and patients. Three learning streams were designed: 1) Education: Genetic Testing, Patient Registries, PROMs, Clinical Trials, and Regulation & HTA; 2) Participation: Ethics, Advisory Boards, and Health Futurism; and 3) Innovation: Rare Disease Policy, Data Generation, and the Student Project, where trainees were tasked with generating data via surveys and designing their own advocacy strategies. A blended learning approach consisting of independent e-learning, interactive seminars led by an SME, and skills development workshops was used.

Results : Analysis of the programme is underway. 9 of 11 participants completed the programme on schedule. Preliminary findings highlight increased understanding of the scope, processes, and role of patients in medicines R&D for retinal diseases, and the policy actions that support them. The breadth and depth of topics covered, as well as the side-by-side learning of patients and researchers was of high value to both groups. The student project was also reported as a practical, confidence-building experience. As a result of the skills developed, 5 graduates have enrolled in RIs 2022 policy action taskforces to date.

Conclusions : This pilot has demonstrated the potential impact of a tailored and education programme, that develops advisory and advocacy skills in retina patients. Results of this programme by way of increased engagement of graduates with RI projects is already evident. This engagement is predicted to yield broader representation of effective retina patient experts at a global and national level, leading to patient-centred innovations in medicines R&D and health policy.

This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually.

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