#EAPM - Europe needs to make the most of electronic health records

The European Commission this week announced that there will be a focus on developing electronic health records (EHRs) for the benefit of citizens travelling between countries, for example on holidays, writes European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan.   

And, lest we forget, the EU is full of migrant workers, too, who could also benefit in a big way from such a system.  An EHR is a digital version of a patient’s previously-paper health chart and history. EHRs are designed to be patient-centered records that make information available instantly and securely to those users who are authorized.

They can contain a patient’s diagnoses, medications, treatment plans and much more to create evidence-based tools allowing doctors anywhere to make decisions about a particular patient’s treatment needs.

At the bottom line, they are intended to share information between healthcare services, labs, specialists, pharmacies, emergency facilities, and so on.  The idea is for a greater and more seamless flow of information within a digital healthcare structure in a bit to improve patient care, increase patient participation in decision making, boost coordination in care, as well as improving diagnoses and patient outcomes, upping efficiency and bringing down costs.  It all sounds great. And it is, at least in theory…

The missing links 

Unfortunately, the way EHRs currently function is sub-optimal, this despite the General Data Protection Regulation (GDPR), research frameworks and high-speed computing technologies that are all designed to enable and support the collection, storage, sharing and interpretation of data.

What is required, it seems clear, is a centralized point that allows these vital data to be accessed from anywhere in the EU by those authorized to do so.  This is not the case right now, as most patients needing treatment while travelling between Member States will testify. Information is often fragmented, phone calls are often needed, and even the largely redundant fax machines get a run out from time-to-time.  Interoperability of systems (or lack thereof) is one key issue that needs to be addressed quickly. It seems bizarre that we can collect all this important information yet, despite leaps in IT, we are still not able to empower our healthcare professionals to act at an optimal level on the back of highly useful data.  In essence, the promise of EHRs is a long way away from being fulfilled.

For its part, the Brussels-based European Alliance for Personalised Medicine (EAPM) is of the opinion that one way to solve the problem is to start with the basic step of putting out a tender for an organization to take a long, hard look at the interoperability issues, between member states and, indeed, regions within them.  Even departments within the same hospitals are often unable to ‘speak’ to each other properly and workable frameworks clearly need to be put in place.

What the Commission says 

As mentioned, this week the Commission announced its next moves in this area. As part of its Work Programme 2019, it spoke about initiatives to address outstanding challenges and reinforce the foundations for a strong, united and sovereign Europe.   Commission President Jean-Claude Juncker, referencing next May’s European Parliament elections, said: “Citizens do not care about proposals, they care about laws in force that give them rights. There would be no better message to voters taking to the polls next year than if we were to demonstrate that this Union delivers concrete, tangible results for them.”

On that note, the Commission says it will make a Recommendation to establish a European Electronic Health Record. Currently, the exchange of health data is limited to summaries and e-prescriptions.  But the Commission has said that it will work with Member State representatives to find an ideal, universal format to exchange more health data across EU borders. This is not before time, but details are still sketchy. Of course, any such system will be devised in a format that includes “appropriate data protection safeguards and security of patient health data”.

Data sharing down the line 

EU countries are currently not obliged to share health information, (although a growing amount of voluntary cooperation does exist). Some would say that this lack of obligation is a ridiculous state of affairs regardless of the jealously guarded member state competence for healthcare. It should be for a patient to decide, surely.

One good example of co-operation that surfaced recently was when the Commission and a clutch of EU countries signed a joint declaration in April under a proposal floated by EAPM as ‘MEGA’ (Million European Genomes Alliance).  The declaration paved the way for a coalition of the willing to work together to build, by 2022, a cohort of one-million genomes to be used for medical research.  The idea of the MEGA project grew from the utility of genomic data in improving health care and personalised medicine, plus the rapidly declining cost of genome sequencing.

Breakthroughs in genetics,, calls for more and better screening, developments in imaging techniques and the emergence of what we now call ‘Big Data’ have already changed the world of healthcare for ever. All for the benefit of patients. But we need share more of these new scientific methods and enable higher levels of collaboration.  By 2022, a cohort of one-million genomes to be used for medical research. The idea of the MEGA project grew from the utility of genomic data in improving healthcare and personalised medicine, plus the rapidly declining cost of genome sequencing.

The Alliance and its interaction

EAPM is and has been working at national and regional level in many related arenas. For example, the Alliance will have input at a meeting on the 25th October run by the Committee of the Regions on Digital Health for all.  All data is important – without ‘small’ data there will be no ‘big’ data, and the aim is to use coordinated tools for the benefit of all citizens, bringing access to safe and high quality digital health services.

Time to modernize 

In every aspect, healthcare needs modernizing and, while top-down legislation on clinical trials, IVDs and data protection and sharing has helped in recent times, arguably the EU should be doing more from a centralized point and coordination, at the very least in encouraging the member states to share more information on health, cooperate way-more effectively, work to avoid research duplication and so on, for the benefit of the citizenry.   Electronic health records are a case in point, as are the recent proposals on joint action on health technology assessment.

We know that when it comes to exchanging healthcare data, most patients are willing to do so for the benefit of others today and tomorrow, albeit with robust privacy and ethical safeguards, and the Commission itself has decided that the benefits outweigh the risks.  Indeed, the EU Executive is of the belief that that digitizing health systems across Europe will help face the challenges of an aging population and limited health budgets.

But the time has come now for action, rather than merely beliefs and proposals, because if our highly mobile populations are going to benefit fully from the huge amounts of health data that are being gathered on a daily basis, then streamlining, improving and ramping up the use of EHRs is a sure-fire way to improve matters in the near future.

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