BLOG – The Patient Community, Engagement, and Insights around RWD/RWE

In November 2018, the IMI (Innovative Medicines Initiative) launched the EHDEN (European Health Data & Evidence Network) project to address the current challenges in generating insights and evidence from real-world clinical data. But while most clinicians, payers, regulators, industry and many governments are fully on-board when it comes to the benefits of harnessing real-world data to generate real-world evidence (RWD/RWE), many patients and patient communities are still catching-up.

It is easy to get agreement from key stakeholders to the fact that more harmonised and widely shared health data can help us to better understand disease, treatments, outcomes, and to develop new therapeutic devices and expand personalised medicine, all to ultimately improve people’s lives. However, being able to meaningfully engage in RWD/RWE discussions, signal issues and propose solutions, requires technical know-how and a level of expertise that can be challenging for small/local patient groups to develop.

To become more of an equal partner, patients and patient groups need to be better versed in health data literacy to be able to meaningfully engage and contribute to shaping discussions, and the course of RWD/RWE. As a body that seeks to ultimately foster a more self-sustaining, open science collaboration, and whose foundational pillars include Education and Community, EHDEN is keen to ensure the patient voice is adequately represented. Let’s face it, patients and patient communities are truly an integral part of the RWD/RWE dynamic – data means nothing if there is no evidence, and for evidence to be generated, patients need to be fully comfortable sharing their data.

 To achieve this, we need to start from the bottom up.

Empowering patients and patient groups with the knowledge to understand the key terminology and benefits of RWD/RWE is essential. This is why the European Patients’ Forum, in collaboration with other EHDEN colleagues, is working to develop an EHDEN Academy course for patients and lay-users. After just having celebrated its first year and 1,000th enrollee, the time is right to expand the Academy’s course offering to include educational content around the critical importance of sharing  standardised real-world data, at scale. The course will be tailored to lay-users that may not have a clear understanding of the many historical challenges that have long held back healthcare data sharing. It will feature modules on the basics and value of RWD/RWE, use-cases, how a federated data network functions, as well as other modules on governance and data privacy, and the ultimate benefits (‘ideal scenario’) of data sharing. Stay tuned for announcements on the launch of the first course. 

Estefania Cordero

Project Communications Officer

European Patients’ Forum