EPIS 2021: Data Matters

Data Matters...

To all digital stakeholders

To individual patients

And to the EPIS community

Data matters to all digital health stakeholders – it brings value to patient organisations, patient communities, health systems and society at large. Data also matters to individual patients, but their voice isn’t always heard in relation to how their personal data are collected, used, stored, and shared with them.

As health data is a complex concept, it is imperative that patients and patient organisations are empowered to get involved in ensuring that the patient perspective is systematically embedded in decisions and activities around health data.

To enable this, EPIS 2021 explored different matters relating to health data, to answer the following questions:

What is the value of health data to the patient community?
What are the crucial steps on the patient data pathway?
What are the key changes and challenges affecting this?
And how can we as the EPIS community get involved?

Webinar Highlights:

Why Data Matters

The EPIS community came together to discuss the value of health data for society and individuals, highlighting that health data are key for improving knowledge and quality of life.

The outcomes can be found here:

Data Issues Matter

EPIS panellists discussed how issues around the future of health data sharing may be overcome, flagging the importance of accountability, communication, informed consent and patient advocacy in this.

The outcomes can be found here:

Patient Community Matters

Representatives from the patient community shared practical examples of how patient organisations have been involved in data generation and top tips for how to take action by using and applying health data.

The outcomes can be found here: