| 07 October 2016

Retina International At European Patient Summit - Milan


European Patient Innovation Summit – Creating Connections

Unlocking the potential of digital technologies

Retina International participated in a European Patient Innovation Summit on Tuesday and Wednesday October 4th and 5th in Milan.

The meeting brought together patients from eight specific disease areas to discuss how the use of digital technology can contribute to improving the delivery of care and strengthen the patients’ voice.

Christina Fasser, President of Retina International was one of the organisers of the event that attracted over 300 delegates from all over Europe.

The meeting started with a plenary session moderated by Christina Fasser which featured presentations from Sam Dickinson, Head of Behavioural Innovation, at Google. His presentation on unlocking the potential of digital technologies in healthcare highlighted the real importance of collaboration between medical professionals, psychologists, engineers and designers and, interestingly, those to develop on-line gaming technology. Examples of what these groups can achieve when work together, including innovative care pathways that hold much promise for the delivery future of health care, was remarkable.

A talk from Professor Esther Rodriguez-Villegas Imperial College, UK who is developing techniques to accelerate the diagnostic journey for patients and for the medical professional ‘helping patients develop mastery over their condition through technology’ was particularly illuminating, engaging and again held much to be hopeful for in the not too distant future,

At the second plenary patient representatives delivered diverse and useful presentations on topics such as how the networked patient can improve advocacy outcomes and the power of Social media to raise awareness.  Caitriona Dunne from member organisation Fighting Blindness Ireland presented on developing websites for the vision impaired while catering for a multistakeholder, culturally diverse and every changing audience.

Five workshops then followed on the various ways in which technology can amplify the patient voice and produce positive outcomes across many priority areas for organisations like Retina International.

  • Workshop 1, co-moderated by Caitriona Dunne of Fighting Blindness Ireland, focused on how digital technology can give patients a voice in drug development
  • Workshop 2 discussed how technology can lead to organisational effectiveness
  • Workshop 3 examined  the role digital technology can play in improving fundraising outcomes
  • Workshop 4: Co-Moderated by Avril Daly CEO of Retina International, explored ways to achieve success when lobbying and campaigning
  • Workshop 5: focused on how technology can facilitate the doctor patient relationship.

On day two the workshops were repeated and were followed by eight disease specific tracks. Retina International facilitated the Retina Track which provided participants with the opportunity to share best practices in meeting the needs of patients with retinal conditions, and was also an opportunity to explore the concept of patient reported outcomes (PROs) in retinal conditions from a patient perspective, There was a good discussion on the need for access to and reimbursement of genetic testing for IRDs and a discussion on advances in the management of IRDs and AMD.

Retina International would like to thank Retina France, Accion Vision España, Retina Italia, Macula Retina Spain, Retina Suisse, Fighting Blindness Ireland, Retina Poland and Pro Retina Germany for their great presentations,

Following a final plenary where moderators from the five working groups presented feedback and recommendations from their sessions, the meeting was closed

The Summit provided participants with an excellent opportunity to network and discuss ways in which they could collaborate and learn from each other’s experiences, which are often very similar despite the conditions represented being so different. The disease specific Track gave organisations like Retina International a chance to connect with its members and discuss how to work together to ensure our collective goals are met.

A full report from the meeting will be available in due course and Retina International will share this with its members,



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