First Author: A.Daly SWITZERLAND
Co Author(s): C. Fasser
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Inherited Retinal Diseases (IRDs) cause severe vision loss and the impact on quality of life is immense. Following decades of research potential treatments are emerging. The genetic characteristics of IRDs mean a reliable genetic diagnosis is a prerequisite for inclusion in clinical trials. However, low levels of awareness among patients and medical professionals and issues of cost have resulted in a barrier to access. Retina International (RI) is developing an on-line genetic testing toolkit to educate stakeholders about the new possibilities of genetic diagnosis, providing tools to advocate for accessibility to and re-reimbursement of genetic testing services nationally and internationally.
There is currently no cure for people living with IRDs. Small, scattered patient populations worsen inequalities in accessing quality and appropriate care and services, including genetic testing. These challenges can be mitigated only by working in synergy with educated advocates representing all stakeholders including, patients, medical professionals, researchers and industry
RI is working with its patient members, clinicians and researchers using focus groups, webinars and surveys to establish the level of knowledge in the first instance in each country and then among individual patients and their representatives. The surveys have allowed for establishing the level of knowledge of the medical professionals with which the patients interact. Through a multistakeholder approach we can develop a consensus approach to inform a suite of accessible web based communications materials targeted at patient organisations and professionals in ophthalmology. RIs high level SMAB is working with patient leaders drawn from seven countries and students in retinal research to collate the information generated and write content. A design team with expertise in accessible media are facilitating the production of simple user friendly materials including text, audio, and visual content for global application. Since 1978 RI has been a leader in patient advocacy in research, therapeutic development and market access. A multistakeholder approach to ensuring that patients and professionals have the best tools at their disposal to advocate for access to the diagnosis, care and therapies they need and deserve is critical. In order to achieve this, multi-stakeholder cooperation is managed in a strategic and structured way.
In Spring 2017, a fully accessible toolkit will be available to the membership of RI and its SMAB and will be circulated through learned societies in the area of ophthalmology and genetics. To ensure the genetic testing toolkit is maximised a supporting communications strategy will be employed. The result of this project will be a coordinated and consistent voice in the Retina community globally among patient and professionals to advocate for better access to and reimbursement of genetic testing services.
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Working with these stakeholders to provide advocacy tools to ensure fair and equitable access to testing will assist in the populating patient registers and better facilitating the clinical trial process and will ultimately expedite innovation in the area of ophthalmology and empower patients through education and knowledge dissemination.