EAPM Seminar on 7 June: 'Securing European citizens' trust in the European Health Data Space as an aid to health care'

Greetings all! Registration is now open for our upcoming seminar on the European Health Data Space which will be a ‘virtual’ event, held online, on Tuesday, 7 June, 2022, 10– 13h CET, writes European Alliance for Personalised Medicine (EAPM) Executive Director Dr. Denis Horgan.

Please find the link to the agenda here and to register here.  

To perfectly match the less-than-perfect times we find ourselves in, the conference is entitled 'Securing European citizens' trust in the European Health Data Space as an aid to health care'. 

Despite us not being able to meet face-to-face, events such as this still allow the pulling together of leading experts in the arena of personalised medicine drawn from patient groups, payers, healthcare professionals plus industry, science, academic and research representatives.

A key role of a conference is to bring together experts to agree policies by consensus and take our conclusions to policy makers. And this time, we go even further into the realm of expertise, given the huge crisis that we are all facing.

So, what are among the topics on the table?

Data Governance

Data is the essential fuel for digitalization, and a strong data ecosystem is the infrastructure required to deliver that fuel in a successful response to tackle different diseases. But at the level of this most basic need, progress is hampered by severe limitations in the ability of many jurisdictions to collect, access and share high-quality data. These limitations have been more cruelly exposed than ever by the recent COVID 19 pandemic. The negative consequences for the effectiveness and efficiency of health systems has become all too apparent, and the authorities responsible for them are being driven to a new recognition of just how critical the availability and sharing of comprehensive health data is to addressing major public health challenges. 

Health challenges

Different health challenges have exposed the negative impacts of weak data ecosystems on health system efficiency and public health responsiveness. The delivery of accurate and comprehensive data with the necessary rapidity is a widespread challenge – often because of inadequate processes, aggravated by differing models, methodologies and technologies across countries and regions that impede compilation, aggregation and comparison. 

Widening access to digital data

The challenges are not merely technical. There has also been resistance to change among established systems. But the pressing needs of the moment are starting to erode some of those constraints and to promote pragmatic flexibility – in terms of accepting new methodologies and even modifying payment systems to permit their deployment.  

Jurisdictions are authorising new access to digital health tools such as remote patient monitoring and virtual clinician-patient engagement.  

Digital innovation and collaboration

The digital tools developed by innovators in response, such as in the pandemic  - in some cases in partnership with governments - have reinforced the importance and possibility of digital health innovation more broadly.  New approaches are helping ease the strain on overstretched healthcare facilities, or enabling patients to conduct initial self-diagnosis, or generating macro-data on the spread of disease by aggregating individual patient or physician data.

The speed of health system evolution in these new circumstances can also present challenges for many established practices. Because outpatient services may find it difficult to keep up with novel demands, automated logic flows (bots) are being developed that can refer moderate-to-high-risk patients to nurse triage lines and schedule video visits with established or on-demand providers.

Use my data, but carefully 

The public are increasingly aware of the power of individual and population-level data to understand different diseases, and are demonstrating a willingness to share personal data, while maintaining data privacy standards.           

Digital literacy

The power of personal health data and the growing public engagement with personal choices has created new appetites for information about individuals’ data and how they can benefit from its exploitation. For this to work to universal benefit, all stakeholders need the digital literacy and capacity to contribute, use and benefit from health data responsibly, ethically and sustainably. At the same time, effective information provision to the public – about the different diseases and about the uses their data can be put to - can also benefit frontline health professionals and policy makers, reduce public panic and help in promptly communicating crucial findings to the international scientific community. 

The demand for rapid access to information among both expert and general audiences is triggering the use of rapid approaches to knowledge sharing, and the elimination of typical barriers/delays such as paywalls, reassessment of peer review processes. 

Health data is becoming accepted 

Data and digital literacy are emerging as an asset among political leaders and the general public, increasingly accepted as assisting sound decision-making and knowledge-transfer and connectivity during times of social distancing. But the merits are dependent in large measure on the skills of the population – which are not evenly distributed across social groups or the demographic. 

Will the future of health care be digital?  

The pandemic has underlined the need to accelerate digitalization of healthcare systems around the world. Though some jurisdictions have made progress, new policies to enable data collection, sharing and analytics and support acceptance and adoption of innovative digital technologies must be enacted at a faster pace to protect patients, ensure health system sustainability and achieve better health outcomes.

Data analytics

Advancing data and analytics capabilities is seen as crucial to meeting the challenges of current and future health threats. Disease surveillance and response activities are hampered by 20th century technology, with  critical health data still managed on paper records or in spreadsheets that require extensive manual data entry and analysis.

The above are just an example of the huge topics, among many up for discussion on the day. So be sure to join us on 7 June from 10-13h CET. 

Please find the link here and to register here.

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