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Big Data, Open Data and eHealth in an ecosystem

Oscar Wijsman's picture
Submitted by Oscar Wijsman on Fri, 2012-04-20 11:14

Big Data is the term given to data collections that are so big, complex and unstructured that they are no longer manageable using the usual tools such as conventional databases. To be able to manage such data collections, more and different knowledge will be needed in the future. Knowledge about standards, filters, meta-data, techniques for storing, finding, analysing, visualising and securing data, and sector-specific editing of data. Increasingly, an extreme amount of computing power will be needed, such as that provided by a supercomputer. Furthermore, the massive storage combined with the computing of the large data amounts will consume huge amounts of energy, unless organised more efficiently so that there is a return on the energy costs.

Aiming to make the most of the fast-growing volume of digital data, the Obama Administration recently announced a “Big Data Research and Development Initiative,” pledging to “extract knowledge and insights from large and complex collections of digital data,” to help address the US most pressing challenges. To launch the initiative, six federal departments and agencies announced more than $200 million in new commitments that, together, promise to improve the tools and techniques needed to access, organize, and glean discoveries from huge volumes of digital data.

This clearly shows the importance of big data and also that it must be incorporated in the European Digital Agenda. But Big Data is not on its own. It has a strong relation with Open Data and eHealth.

Big data is often associated with all the data on the internet but one of the major data producers is the medical world with e.g. a kaleidoscope of imaging from X-rays, MRI's and other scanners, genetics, pathology, sensors and research data. Over 30% of all data stored on earth is medical data and it is growing rapidly.
However, the medical sector has a problem with this data. Often data is stored in a vendor specific manner so that it can’t be shared or used in a smart way: between disciplines, intramurally or with patients. Neither can it be used for research or educational purposes because it is locked-in or a digital light box. To not be able to access or process the data results in a huge loss of knowledge and unused innovative potential. It is a cost driver instead of a value generator. What we need to do is make this medical data also Open Data and be able to use it for eHealth.

Note that Open Data in this situation means only access for medical professionals and patients, protected by our laws, rules and regulations. Big data in medicine has an enormous potential but harnessing that potential is still in its infancy. It needs a new area of expertise that requires new skills (knowledge) and applications (tools).

The city of Almere, part of the Amsterdam Metropolitan Area has started to unlock this potential through the ambitious programme Almere DataCapital and within this programme the Dutch Health Hub. The term DataCapital refers to an ecosystem of companies, services, knowledge and facilities all dedicated to the capture, storage, search, sharing, analysis and visualisation of big data. Based on the 2011 McKinsey study "big data the next frontier for innovation", the city expects to generate new economic activity and with it, new jobs and ultimately become a European big data hub. But that is only one side of the same coin.

The Dutch Health Hub can be instrumental for Open Data and eHealth. So I would like to invite the EU to support our initiative. The way we must deal with medical data in the future will cause a landslide in healthcare and is a paradigm shift. But we must do it if we want to keep healthcare affordable for our children in the future and make use of all the information we have to realise healthy aging.

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Gianluigi Cuccureddu's picture
Submitted by Gianluigi Cuccureddu on Fri, 2012-04-20 11:28

Hi Oscar,

I wholly agree with "The way we must deal with medical data in the future will cause a landslide in healthcare and is a paradigm shift."
If we look at care cycles, the opportunities in service innovation by understanding big data, creating healthy lives, prevention etc, it will mean new business opportunities.

The Wallstreet Journal had an interesting article:

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miguel.gonzalez-sancho-bodero's picture
Submitted by miguel.gonzalez... on Fri, 2012-04-20 22:36

Interesting indeed
1) What about privacy and safety considerations when sharing all those health data?
2) Are you aware of other initiatives similar to yours elsewhere in Europe?
3) The EC is already funding funds many projects on open data and on e-health; have you checked if your initiative would fit within the possibilities for EC support

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Oscar Wijsman's picture
Submitted by Oscar Wijsman on Fri, 2012-04-20 23:57

Dear Miguel,

1. This is usually the first question we get. Sharing medical data is up to the owner or steward of the data just like it currently is within the hospital walls. We do not change that. For research, data is usually made anonymous and can be used in datasets as long as a patient gives consent. Sharing data among (teams of) medical professionals that treat a patient (e.g. in different hospitals) is up to the patient to decide.

Since this is a sensitive subject we have a (legal) workgroup in the programme dedicated to security, safety and privacy. It is staffed by two leading professors, a specialised layer and an EDP auditor. They check on all applicable (Dutch) laws, rules and regulations to be sure we fully comply. However, in my opinion, the patient should always be the one who decides what is done with the data.

2. There is no initiative similar to ours in neither Europe nor elsewhere in the world. It is unique. We started the Dutch Health Hub almost two years ago as a kind of shared service centre and it evolved. It is now embedded in the programme Almere DataCapital and we are getting into the phase of 'spreading the word' internationally and setting up PoC's. Note that its origin is in the Dutch media sector, it is a trans-sectoral innovation. The transformation during the past 15 years of the Dutch media industry into a big, data driven, hub-oriented, open infrastructure brought us a new, future proof perspective and a strong position in Europe. Our hypothesis is that the healthcare sector could and should embrace this transformation and make a quantum leap how to deal with data in a much shorter period by using this knowledge.

3. We are currently working on this issue since there are no projects where it all comes together. This is mainly the reason for my posting to ask for EU support. We need all the help we can get. eHealth will only work when data is accessible and the availability of new innovative applications that can be used in a 'pay per use' service model. Our programme combines innovation, eHealth, Open Data and a safe Cloud.

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miguel.gonzalez-sancho-bodero's picture
Submitted by miguel.gonzalez... on Sat, 2012-04-21 23:17

Thanks Oscar. I find your project really interesting. For now, I'm going to alert my Ec colleagues working on e-health so they can follow up with you at an expert level.

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mgarrigap's picture
Submitted by mgarrigap on Sun, 2012-04-22 18:59

Thanks Oscar, this is a great example!

I'm agree with you, the health area could improve if there is a good (big) data management.

This project is in specific city, do you imagine if it would be in a world scope?

Obviously, the privacy issues are very important in this case, but I think they aren't a stopper (if we do the right actions according to privacy rules).

I will follow this project, as you said, the eHealth area don't have a lot BigData/OpenData initiatives.

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freekbomhof's picture
Submitted by freekbomhof on Thu, 2012-06-07 10:01

If we solve the Privacy issue in this project (health data), we can solve it anywhere. Medical related data are both *very* private and *very* useful to others. So the solutions that are explored and implemented in this project, will be really interesting!

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Oscar Wijsman's picture
Submitted by Oscar Wijsman on Thu, 2012-06-07 11:56

One of the challenges of opening the silo's with medical data is the way it is done and making it safe. Open data does not automatically mean access for anyone and for free. That is a common misunderstanding. We do have (and need) rules.

In one of my other postings I refer to the EC report on eHealth and Open data that also identifies this issue. So far, a lot of innovation and cost saving is blocked due to the fact that the mantra for many is "it is not allowed to use it" or "beware of the dangers".

Dealing with the privacy issue for health data is an important part of our program and we work on this with ethical and legal experts (some high standing professors). If we do it right, it must also be coordinated on a European level so we have alignment and can match this with national laws and legislation. Note that in NL we do not have any laws that deal with (medical) data ownership, it's only about responsibilities and that makes it even more complex. You would expect that the patient owns his/her data and decides what can be done with it but legally it is not defined in NL.

The near future will bring even more service platforms and data markets and they will be operated in a commercial way. Big data means big money. Personal data is often regarded as ‘the new oil’ and like oil, it can be used for many purposes with huge profits but for only a few if we do not manage it. The speed of changes makes that the policy process currently has a very hard time to keep up so needs all the support it can get.

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Oscar Wijsman's picture
Submitted by Oscar Wijsman on Tue, 2012-04-24 00:17

Dear Marc,

Our Dutch Health Hub is still a national initiative as part of the programme Almere DataCapital but we have anticipated to upscale it on European level (with national hubs) since it will benefit every European citizen. However, that will take substantial funding and EUC coordination. First we have to do a lot of work nationally because what we do is a paradigm shift for many. We may have convinced the visionaries, but there’s still a lot of others that must be convinced before they follow. Opening up medical data and use all of it is still frightening for a lot of people, even though we can do this in a safe way and also save thousands of lives (directly or via research) by doing so. Perhaps we could work in parallel with the EC, I welcome suggestions.

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mgarrigap's picture
Submitted by mgarrigap on Wed, 2012-05-02 16:50

Oscar, do you know Diagnosticat project?

Diagnosticat is a data project developed by the Institut Català de la Salut (ICS), the Catalan Health System, that has the aim of providing information on the diagnoses of diseases most important in Catalonia, both for health authorities as the general population.

In Catalonia, the medical records are digitalized for years, therefore, the clinical data of citizens (6 million) are stored in databases, being managed by the ICS.

Now ICS has developed an automated extraction and processing of data from the clinical history that culminates with the publication of this information in an accessible website called Diagnosticat.

In Diagnosticat epidemic curves are presented, the age pyramids and a summary table of the diagnostics of the nine more infectious diseases.

This information is updated weekly. In fact, it is updated frequently and quickly just minutes after the end of each epidemiological week. This immediacy facilitates its use in health planning.

The strengths and innovation of this project are:

All these features make the website Diagnosticat a useful tool both for the openness and dissemination of information as the management of health resources.

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Oscar Wijsman's picture
Submitted by Oscar Wijsman on Fri, 2012-05-04 21:16

Marc, thanks for the information.

I did not know about this project, it is interesting. A good example of opening up data and sharing it, not only by visuals but it can also be downloaded. A nice add-on could be to make all kind of combinations of this data with e.g. a map (e.g. Google map) and combine it with statistical data and weather data just to see what comes out. Not sure if that is useful in a medical sense (I'm an engineer, not a MD or researcher) but just to provide examples what can be done with this kind of data. It could be used in combination with medical data that is still in the silo's too.

In our Almere DataCapital programme we have a contact with some Big Data specialists from BES LaSalle University Barcelona. I will check with them if they perhaps use it allready.

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