In October 2022, we hosted our very first Data Saves Lives Ambassador Training Bootcamp in Prague, Czech Republic. The purpose was to equip regional and national level organisations with practical tools and tips on how to advocate for and have informed dialogue around health data sharing. This blog gives an insight into the hot topics that were discussed as well as a summary of the key insights.

In our latest blog, Clara Heathcock, Chronic Urinary Tract patient, shares her personal experience of falling ill in a country where her disease was not recognised, and the importance of health data coding in identifying conditions and appropriately treating them.

For those that were fortunate enough to be able to join us at the European Patients’ Forum (EPF) Congress in Brussels at the end of June, the Data Saves Lives team explored this title question with a highly engaged group of delegates.

As experience and research continues to develop, we see that the ability to access data affects not only the patient’s ability to look after themselves, but also their relationships with their clinical team and with their own illnesses and comorbidities. A shift to being empowered begins at the point of diagnosis, with a collaborative and interactive relationship between patients and healthcare professionals, which empowers patients to take on responsibility for their condition with the appropriate clinical support.

Looking to design a health app? Companies are becoming increasingly aware of the importance of involving patients in the development process of new applications. Read on as a member of the - Gravitate-Health UAG shares experiences of using digital health tools, including thoughts on what aspects work well and not so well from a patient’s perspective.

Unfair and systematic differences in healthcare between different demographic groups have led to avoidable health inequalities. The collection of health data gives us the opportunity to address the gaps, but do we really have the full picture?

Data does save lives, but information quality is paramount to achieve successful outcomes and this, in my experience, cannot be achieved if patients are not full partners and agents in their care, using the right tool to do this.

This year was really full with news and resources about health data sharing. The European Health Data Space became more and more focused and discussed. Additionally, patients and citizens started to become more interested in health data sharing. Nevertheless, it became clear again that there is a significant need for more information and education around the topic too.

Often when we buy new shoes, we have to learn to walk in them – a process that is long and sometimes, uncomfortable. If you hadn’t walked in my shoes, you wouldn’t know what they truly felt like. The reason I use this shoe analogy is because it’s a phrase often used by people living with chronic conditions: “You can’t walk in my shoes!”

I recently co-led a virtual workshop for patients and the public about future opportunities and factors that influence acceptance of the European Health Data Space (EHDS). The EHDS is a new initiative of the European Commission for a portal of health data resources across Europe. The initiative is still in an open consultation phase. The EHDS aims to accelerate research which uses health data, and to enable individuals to have access to their own health records across borders.

For many people it is a confusing thought to imagine your health records being anywhere other than the country in which you reside. How did they get there, if you’re not there? If you moved to another country, why wouldn’t they move with you?

For those looking for a helpful overview of what’s out there, some of the terms you might come across and examples of how tech is being successfully used, please read on.

Influencers are not just people talking about lifestyle products or fashion. Many people living with chronic diseases report about their life with the disease and so-called health or patient influencers have been recognized as important stakeholders in healthcare for years now.

The pandemic unveiled already existing weaknesses, which added up to the struggles health systems found themselves with. COVID-19 will have profound implications on economic progress, trust in governments and social cohesion but, above all, on patients’ health.

The American author and columnist William Bruce Cameron once said in 1963, “Not everything that can be counted counts, and not everything that counts can be counted”. This is particulary true when it comes to our healthdata.

Results from COVID-19 vaccine trials have been widely reported in the media. As a clinical trial statistician, I was interested to find out what members of the public thought about the results that were reported, and whether the numbers presented in the media on vaccine effectiveness had been fully understood.