Parallel session 14.30 - 16.15

Patient engagement: how end-users can help you develop better medical products

We find it very important there are no financial barriers for patients to join our Partnerships Meetup. Please contact Leone Böck if you are a patient and would like to receive support to travel to the MeetUp.

Input from end-users can make innovations more successful by complementing technical knowledge with practical experience. In the life sciences and healthcare environment, involvement of end-users is commonly called ‘Patient Engagement’. We recognize the importance of end-user involvement for the success of new healthcare developments.

During this session, speakers will share experiences and learning points from different perspectives. They will discuss success stories as well as common challenges and share ideas on how to overcome them. You will hear about experiences of engaging patients at different stages of developing a medical product, ranging from research & development, through registration, to bringing the product to the market successfully.

Topics and Speakers

  • Learnings from a European public-private partnership by Emilio Merlo Pich, Executive Director at Takeda, Switzerland
    RADAR-AD is a research project that explores remote monitoring of disease progression in early Alzheimer’s Disease (AD). Researchers work in partnership with patients and their carers throughout all stages of RADAR-AD. This ensures that decisions made in the project lead to high scientific quality as well as being meaningful from the perspective of people living with AD.Dr. Emilio Merlo Pich, co-lead of the patient engagement work package, will explain how patient engagement has been set up successfully (and what challenges were overcome), how it contributes to the research work, and what learnings he is taking away from this.
  • With the patient as the end-user, of course! by Veronica van Nederveen, chair of the Patient Group, Dutch Clinical Research Foundation, The Netherlands
    Patient recruitment will be more effective (quicker and more suitable) if researchers are able to ask patients to join their investigation in a patient-friendly way. Recruitment and engagement during the research will have better results when patients have easy access to understandable information about the study, in a lay person’s own language. Researchers need to know what patients consider important characteristics of quality of life. Is it a longer life, less pain, less itching, walking around, being a part of society, having a job, self-management of their life?In her talk, Veronica van Nederveen will discuss these aspects and share experiences from the DCRF that illustrate how the conversations of researchers and end-users, as equals, can benefit all parties involved.
  • Patient engagement at EMA; a progressive journey by Nathalie Bere, Patient Engagement Specialist, European Medicines Agency, The Netherlands
    In this presentation, Nathalie Bere will highlight how EMA has worked with patients and consumers over the years in a progressive manner to ensure engagement evolved and expanded through mutual learnings. The challenges, as well as the benefits of mutually beneficial interactions, will be covered.
  • How patient organizations can help bring better products to market: example from the Duchenne Parent Project by Elizabeth Vroom, Director at the Duchenne Parent Project and Board Member of EURORDIS Rare Diseases Europe, The Netherlands
    How can companies get patient input to bring the most meaningful solutions to market? And how can patient groups help decision makers identify the real value of new treatments?Elizabeth Vroom will share her experience on this from the rare disease space. We will hear about the Duchenne Community Advisory Board as an important resource for industry, and learn how patient organizations can provide input to Health Technology Assessments and reimbursement decisions.