Data Saves Lives

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Highlights from our October public events: tweet chat and webinar

October was a busy month for the Data Saves Lives (DSL) initiative, as we held two live events to raise awareness of different issues affecting the best practice use of health data with insights from a variety of expert and high-profile panellists.

For those of you who weren’t able to join our live chat on Twitter or our webinar event, it’s not too late to catch up on the highlights…

One region, worlds apart: how do we close the data gap between West and Central/East Europe? Tweet chat

On Friday 2 October, we held a live chat on Twitter with an expert panel to explore how patient groups can help close the health data gap between West and Central/East Europe, with the aid of policy and commercial stakeholders.

We were joined by representatives of the Federation of Polish Patients, the Bulgarian National Patients Organisation, pan-European E-health organisation EHTEL, and the European Institute for Innovation through Health Data (i~HD), who each brought a unique and informed perspective to the hour-long discussion.

They illuminated some of the key differences in the support needed between the two regions, particularly where health data is concerned and what can be done to support more uniform and responsible health data sharing. With almost 200 posts of rich, thought-inspiring content and many Twitter users tuning in via the #DSLChat hashtag live, the conversation reached more than 30,000 people on Twitter. You can read the conversation here.

COVID-19 and beyond: what is the role of governments in tracking their populations’ health and how can we support them? Live webinar

On Tuesday 20 October, we held our second live event of the month – a 60-minute webinar with three prominent keynote speakers:

• Prof Mark Lawler, of Queen’s University Belfast and Co-Chair of the European Cancer Organisation’s Special Focussed Network on Covid-19 and cancer and scientific lead of DATA-CAN

• Dr Clare Walton, Head of research and drug access at the Multiple Sclerosis International Federation (MSIF)

• Alastair Kent, President of EGAN, the Patients Network for Medical Research and Health and former Executive Director of Genetic Alliance UK

With more than 30 live participants tuning in and driving a lively discussion following our expert speaker presentations, the audience were able to:

• Better understand the potential role of governments in tracking their populations’ health

• Better understand the potential influence and role of patient organisations in supporting large-scale health data initiatives in respect to their nations’ populations

• Feel inspired to undertake more data-driven activities, whether community surveys to inform their own organisation’s efforts or to influence the practice of others (government policy, health service delivery etc.)

The presentations will be made available in the new Events section of our website – so stay tuned!

Keep up to date with the latest hot topics in health data

If you’d like to keep up to date with DSL and be the first to hear about future tweet chats and webinars, please follow us on Twitter and Instagram.

Interested in a speaker opportunity on one of our webinars? Please contact Gözde Susuzlu, Project Coordinator of DSL, via email at gozde.susuzlu@eu-patient.eu.