Group on Brain, Mind and Pain
22 czerwca 2016
Robocze śniadanie i dyskusja z Interest Group on Brain, Mind and Pain. Jak zaangażować pacjentów do badań? Co jest szczególnie… ważne w obszarze opieki zdrowotnej? Co oznacza zmiana paradygmatu w tej dziedzinie? Dzięki zastosowaniu nowych technologii system opieki zdrowotnej znacznie bardziej stanie się prewencyjny, efektywny finansowo, zorientowany na pacjenta, z wynikami terapii na wysokim poziomie.
eHealth – RESEARCH DEVELOPMENT (working breakfast – 22nd June 2016)
What is especially important at the area of healthcare? What does it mean the shift paradigm at this field? From model aimed at reactions on diseases to the model focused on prevention.
This is – the new opportunity due to new technologies, due to digital game changer – to make the healthcare systems much more preventive, cost effective, patient centric, with high quality results of the therapies.
But this is not only the technology development – as apps, new devices, wearables for measuring the state of health etc. This is – first of all – our knowledge! So, the research development is the unconditional part of the solution. In the digital era, we can say – data driven research.
Some examples for consideration.
During last months, in MIT Technology Review – they have presented 10 breakthrough technologies two times. Among them we have had:
- Liquid biopsy: a blood test to catch cancer early. It is possible, because fast DNA- sequencing machines are leading to simple blood test for cancer;
- Brain organoids: three-dimensional clusters of living neurons that can be grown in a lab from human stem cells. It matters, because researchers need new ways of understanding brain disorders and testing possible treatments. This new method for growing human brain cells could unlock the mysteries of dementia, mental illness, and other neurological disorders. As some researchers highlight: organoids could be far more useful than animals in many experiments;
- Internet of DNA: technical standards that let DNA data bases communicate. It means, that your medical treatment could benefit from the experiences of millions of others. So, a global network of millions of genomes could be medicine’s next great advance;
- Immune engineering: killer T cells programmed to wipe out cancer. Those genetically engineered immune cells are saving the lives of cancer patients, because T cells can crawl, sense things, and even kill other cells. They are little robots;
- DNA App Store: a new business model for DNA sequencing that will make genetic information widely accessible online. It is clear now, that our genomes determine a great deal about us, including our likelihood of getting certain deseases. An online store for information about our genes will make cheaper and easy to learn more about our health risks and predispositions.
It sounds unbelievable! But this is not the future, this is incoming reality!
What we need to achieve it? How it will be possible? It is important to understand some key factors for mHealth research development in the near future:
– Hyper-personalized medical records – As the acquisition of data becomes streamlined, medical records will become intensely detailed and personalized to each individual;
– Intelligent data – As medical records increase in number and reliability, datasets and analytics will start to play a role in diagnoses, prescriptions, etc. Interoperability will allow information shared internationally to benefit hospitals and clinics worldwide;
– Increased dependence on technology – The current way of managing patients will quickly grow to be obsolete as intelligent software steps in;
– Sensor Technology
Sensors today are smaller, smarter, and more sensitive than ever. Sensors will be embedded in ubiquitous items and transform data collection and real-time analysis feedback into the new, normal industry standards;
– Wearable Technology
The integration of mobile devices into lives of ordinary people through wearable technology. This, coupled with innovations in sensors, will be a powerful platform through which maximum impact can be achieved. The internet of things will be acting in full force;
– Cloud Data
The effectiveness of mobile technology relies on data stored in the cloud. Progressive methods of disease management, newly approved clinical drugs, advancement in surgical procedures, etc. will be continuously updated through the information provided by experts around the world. (free flow of data – treat globally);
The best mHealth app is only useful if it is connected to a network of databases through intelligent tools. The innovations in these sectors are not restricted to healthcare– many optimization and data management tools are offered as open-source platforms, are widely-implemented, and rapidly improved. These are tools that will enable the development of mHealth.
What kind of conditions do we need?
– Better and stronger cooperation among all stakeholders is necessary. How to involve patients’ organizations, physicians understanding and participation, Academia readiness for innovation and cooperation, business openness and adjustment to the new opportunities – and create environment for healthcare area research development.
– Reasonable policies at all levels: European, national, regional, local – and global, if possible. The objective is – to establish the background for new science disoveries, but also for open science development and sharing the results and the data. But first of all, we need all kinds of coalitions at all levels for future proof solutions at the healthcare area. And for promotion the changes! We need the new digital health literacy.
– The data is the basis for research aimed at the new medicine development. It requires the clear rules for data collecting, processing, transfering, using and re-using with full respect for privacy and personal data protection. But with open possibilities – under clear rules for pseudonimization, anonimization and new models of computing the data – to process the data for research purposes. We need to understand and interpret in the positive sense the GDPR solution, especially during the period of application of this regulation.
– In addition on the data issue – it is important to remember that sensitive data might be also a fuel of scientific progress. Personal data donated for research (for example, as a part of citizen science projects) might soon become a significant part of scientific resources. We need to look for solutions to be able to achieve it.
– We will also deal with the dilemma of using open data in life science research versus using of closed data. As not everything should and can be open. We have examples were the use of open data would not be the best idea. For instance biodiversity data have been hidden to protect species; genomes of deadly viruses have been hidden to prevent bioterrorism.
– The balance between open and closed – can be reached and we have to make sure that legal solutions catch up with technological development. In this respect, we will discuss how to use sensitive data, open them for the research, but in the same time – provide sufficient protection of these data.
– More than often, the access to the raw data is not really needed and what is important: is access to the computation of data. Data that are already aggregated, run through an algorithm, even encrypted. This computation brings the answers that the researchers are looking for.
An example of this is – Compute Commons concept and initiative, which is about open computation on encrypted sensitive data and in that sense should help to comply with the GDPR provisions.
The question is: does this development really require the new framework: regulatory and non-regulatory? Yes, the new framework is needed. But, how to define the needed regulations? Strong regulations? Or rather “soft law”? We need rules. And it means that we need to have codes of conducts, guidelines, co-regulations, self-regulations, clear certification schemes, and of course – interoperability and standarisation. It is better to have those flexible solutions, than unjustified strict solutions – if we understand that innovation requires open space…..
And last, but not least. We need the leadership – common leadership and shared responsibilities. So, let’s start to do this – together!
Michal Boni, MEP
Brussels, 22nd July, 2016