Могућности здравствених података: Говорите истим језиком 

Good morning, health colleagues, and welcome to the European Alliance for Personalised Medicine (EAPM) update, which today focuses on EU Health Data Space and the crucial issue that was highlighted related to terminology on how this impacts understanding, пише извршни директор ЕАПМ-а др Денис Хорган.

Alignment of terminology

On 7 June, EAPM held an EU expert panel regarding the new proposal on the EU Health Data Space. The panel event brought together policymakers with thought leaders from health care, academia, industry, and patient organizations, to learn from each other and discuss the current state of play and a joint approach forward to developing widespread development and adoption best practice.

One of the key messages that was an outcome is that there is a need for greater clarity among professionals and the public over how the newer techniques of how data can open the door to better healthcare such as the use of data from biomarker testing. At present, inconsistent use of common terms is hindering progress in health care. 

The confusion is evident:  the terminology is widely divergent as can be reflected in the implementation at the country level. 

One of the areas where the need is the greatest is in the terminology relating to testing

For example, biomarker testing for somatic mutations or other purposes, advanced molecular testing, or germline genetic testing for mutations or variants – they all offer a key to improved care, but all of them still suffer from multiple distinct definitions or usages. It is time to harmonize language, simplify communications, and clearly explain the purposes and significance of testing.

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This is not a matter of semantics. It is crucial both as an aspect of the precision that testing can bring, and for permitting the deployment of personalized medicine that offers new levels of care to patients. Biomarker and other similarly advanced tests have become vital tools in diagnosis and treatment, and play a growing role in health research. 

They hold out the prospect of more precise evaluation, of identifying patients most likely to respond to a given treatment, or of more accurate prediction and monitoring of disease progression. They can even identify patients at increased risk of developing a given condition. But confusion about medical jargon is a barrier to the precision medicine these tests permit. 

Advances in the science of testing have moved faster than the capacity of institutions and individuals to keep up, and even professionals employ different terms. Confusion and uncertainty over terminology also hinders efforts to align understanding on the merits of diverse technologies and approaches to testing, both in treatment and in research. Better understanding and streamlined approach to utilizing consistent terminology will aid acceptance and promote public trust, leading to wider uptake of appropriate testing, and better health.  

A unified voice will help the medical community and patients achieve common understanding about the benefits of the testing on which personalised medicine is based. 

But for all the potential that testing offers, the actual rates of refined testing lag far behind best-practice recommendations. Despite clear clinical benefit and guideline recommendations for predictive biomarker testing and subsequent first-line targeted therapy treatment in patients with non–small cell lung cancer, there is evidence that testing has not been widely embraced in the clinical setting. 

Some formidable challenges must be overcome to reach the goal of leveraging biomarker testing to improve patients' health – and to promote the corresponding sustainability in health systems by reducing missed diagnoses or inappropriate treatment choices. The hindrances range from unfamiliarity in the clinical community with emerging opportunities to uncertainties over payment for testing. But one of the factors now receiving closer scrutiny is the multiplicity of terms for testing. This is inducing confusion among patients and even health professionals, with a negative impact on take-up, and on the search for effective solutions to issues as disparate as data protection and the interoperability of information systems.

An interesting parallel emerged in April, with an event hosted by the European Commission and the Organization for Economic Co-operation and Development to mark the launch of a joint project to develop financial literacy across the EU (the International Gateway for Financial Education project). "The new EU framework aims to establish common EU terminology in the area of financial services and to develop financial literacy policies and programmes," said the announcement. 

If literacy and standardisation terminology is an important area of public engagement for financial services, how much more important is it for health, which affects everyone?

This is an area where EAPM will be engaged at multistakeholder level as legislative/policy level. 

У осталим вестима ....

Cancer rights

The Commission has kickstarted a process to tackle the “right to be forgotten” for cancer patients in the EU, with the potential for a new EU Code of Conduct. 

The “right to be forgotten” refers to someone who is in long-term remission from cancer not having their previous diagnosis affect their access to mortgages and loans. 

Banks and insurers can’t easily assess the risks associated with cancer and possible relapse, explained Health Commissioner Stella Kyriakides on Monday. That means they “tend to be cautious in their approach” which results in people often experiencing unfair treatment in accessing financial services, she said.  

European COVID-19 Scenario Hub

The European COVID-19 Scenario Hub was launched on Monday (6 June) and will help develop projections on the pandemic’s evolution in the long term, announced the European Centre for Disease Prevention and Control in a statement. 

The scenarios will focus on the pandemic’s evolution when it comes to COVID-19 cases, hospitalizations and deaths, covering a nine to 12 month period of time. The hub will use combined scenarios for 30 EU/EEA countries, the U.K. and Switzerland. 

Циљ, of course, is to limit the consequences of the coronavirus by examining different variables in various scenarios, which can help inform policymakers’ decisions. Some of these variables could include, for instance, the rate of waning immunity, the disease agency said.  

COVID and monkeypox

Attention on the COVID-19 pandemic continues to wane as concern turns to monkeypox, where officials and the public will be feeling a sense of déjà vu: The World Health Organization said Tuesday that the monkeypox outbreaks seen across Europe began weeks before the first official reported case on the Continent. “Even as new patients present every day, investigations into past cases show that the outbreak in our region was certainly underway as early as mid-April,” WHO Europe’s Hans Kluge said. 

Лето без маски

While there is concern that summer festivals could be super-spreader events for monkeypox, that’s not really a fear expressed around COVID-19 anymore. With masks almost a thing of the past for much of Europe and thousands of events planned in the U.K. for the Queen’s Platinum Jubilee celebration this coming long weekend, it can feel like the world has moved on from the pandemic. Despite the significantly better epidemiological situation, countries continue to assess and recommend additional vaccination doses. This week Lithuania will be offering a fourth dose to adults who have suppressed immune systems, with the health department saying vaccination of other populations is planned to start in the fall. It’s already expected the elderly and other high-risk populations will be vaccinated.

Hepatitis cases increase

The UK continues to identify cases of hepatitis in children aged 10 and under with another 25 confirmed cases being added to the tally, bringing the total up to 222 as of May 25, the U.K. Health Security Agency said Friday. The cases are mostly in kids under 5, and no children have died. UKHSA said that 11 children have needed a liver transplant. The leading theory is still an adenovirus infection, with the agency saying adenovirus “is the most frequently detected virus in samples tested.” 

A formal epidemiological study is under way and additional research studies are being carried out to understand “possible immune factors and the effect of recent or concurrent infections”.

And that is everything from EAPM for now. Stay safe and well, and enjoy your week.

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