Bridging Conference – Croatia and Germany Presidencies

Maintaining Public Trust in use of Big Data for Health Science
30 June 2020

 Background  

Personalised health care brings us the opportunity to put citizens at the heart of decision making, including communicating openly about what happens to data, who is using it, and what level of control people can, or cannot, expect.

We can apply ethical rigour every time data is used, shared or transferred to safe guard individual privacy, and ensure data is secure and provide guarantees that data will not be compromised by breaches that reveal personal information.   

We can ensure that the public has trust in data science, especially for large scale initiatives that enable significant breakthroughs in our understanding of human disease.

We can underpin public trust by advocating the value of health-data research to society and promote the need for robust, trustworthy and ethical approaches to deliver new health advances for our citizens.

Generally speaking, one of the great challenges to reduce both late-stage incidence and mortality is early diagnosis. But it has to be reliable. In this conference that bridges two Presidencies of the EU (Croatia and Germany), the emphasis is on public trust in health data and its uses.

One of the great opportunities to reduce both late stage incidence and mortality is early diagnosis. But it has to be reliable.

The Sessions at Conference include the following: 

Trust and the Use of Data 

At the heart of personalised medicine, is the hugely expanding use of health data. This is a sensitive topic. There’s certainly a need fort he health-science community to talk more openly about using personal health data in research to enhance human health and eradicate diseases such as cancer and the public has to be at the centre of any and all discussion.

Many national and international initiatives rely on comprehensive data analytics to drive evidence-based solutions to improve health outcomes.

This means, of course, that personal health data is an extremely valuable commodity for research and should only ever be used in a responsible, ethical and secure way that is in the interest of society.

Transparency on why an dhow we use data is vital if Europe is to maintain the social licence for data-driven research. Trust is paramount. 

Cancer – Prevention and Early Diagnosis 

Cancer survival has improved in the last few decades. As well as the implementation of screening programmes, the discovery of novel and improved diagnostic and therapeutic tools have helped to make this happen.

The success of such technologies is based on two principles, the discovery and implementation of new approaches and the improvement of exist in genes.

Early diagnosis, often through screening programmes, is necessary and needed now. For example the biggest cancer killer of all does not have a solid set of screening guide lines across Europe.

Lung cancer is one of the biggest killers on the planet. And while there is, of course, a well-documented direct connection between the disease and smoking, non-smokers also get lung cancer.

In its early stage, lung cancer has a very good prognosis over a five-year period. But this becomes much poorer in later stages, because treatment by then has little effect on preventing deaths.

It is now well recognised from multiple screening trials that if early stage lung cancers are identified and surgically respected, the patient has a very good five year survival.

Meanwhile, the number of men being diagnosed with prostate cancer across Europe has increased over recent years. This is thought to be mainly down to men becoming more aware and having tests to detect very early prostate cancers as well, of course, as the ageing population that leaves us with more-older men in society.

It is important to note that prostate cancers often have no early symptoms. Early diagnosis is therefore key. The problem of prostate cancer will only worsen, with projections suggesting that, by 2060, there will be an increase by around 32 million in the number of men aged over 65. We need to work hard to make policymakers aware of the situation.

More guidelines are required across the arena of healthcare, especially in screening There is a need for agreement and coordination across all of the European Union’s Member States.

Personalised Medicine is not only Treatment: Molecular Diagnostics

As we know, personalised medicine tailors medical treatment to a patient’s personal history, including lifestyle, work and environment.

In this context it supports the sustainability of healthcare systems, which is becoming increasingly important due to the increasing burden that chronic diseases, including chronic cancer, place on healthcare services and their infrastructures.

However, personalised medicine is becoming more-and-more about education, on going trying for healthcare professionals, the use of data for prevention purposes, patient power, and the vital aspect of early diagnosis.

How can we optimise all of these elements for the benefit of the EU’s current patients and those who will follow?

Moving Forward 

There is a huge challenge in terms of sustainability of the whole healthcare system.

For example, how can Europe build and implement a centralised registry of indicators of processes and outcomes of screening programmes that allows, on the  one hand, the identification and analysis of different organisational models to help implementing improvement measures in countries with established programmes and, on the other hand, data that enable the implementation of personalised and adapted programmes in countries with fewer resources thathaven’timplementedthoseprogrammesyetduetotheinitialrequired investment?

How do we develop models and algorithms that include combinations of markers in order to develop personalised strategies to diagnose cancers at an early stages, and produce clinically meaningful results?

How do we embed big data analytics within research programmes to maximise the value of multi-source, multi-dimensional data in the diagnosis, prognosis, prediction and treatment of cancers?

How do we develop open source solutions that promote the sharing of genomic, clinical and epidemiological data for cancer, so as to ensure that data from different sources is combined in an added-value approach to maximise the benefit for cancer patients?

The need to Translate Good Intentions into Actions

There are plenty of well-meaning messages about personalised medicine. The landmark Luxembourg Council Conclusion and Commission plans on digitisation, the use of Big Data in a medical sense, and the cancer moonshot,are cases in point.

But do current approaches and the current legislation really match the scale of the problems we face in healthcare? Is regulation moving fast enough to keep up with the speed of science? Is Europe taking full advantage of new assets and resources in terms of the understanding of health?

These are key questions.

What is certain is that personalised medicine approaches are here and here to stay. But a key issue is how to embed such process into the EU’s healthcare systems across all Member States for the benefit of all citizens everywhere.