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Omat tiedot hallintaan – My Data tutkimuksessa ja opetuksessa

MyData Conference brought the experts in personal data management to Helsinki

Get your data under control – MyData in research and education

Heta Koski

Large volumes of data about all of us are continually accumulating in a variety of registers, but it's difficult to harness fragmentised information stored in numerous different places. MyData appears to offer a solution by placing people at the centre of data management.

This approach is called human-centric personal information management. In practice, this means that organisations give the data they produce and collect about an individual back to the person themselves.

You determine how your data is used

According to the Act on the Protection of Privacy, an individual has the right to know what personal details are being held about them. However, awareness alone is not enough. People must also be given the opportunity to see this data and correct any mistakes where necessary, monitor how and why their personal data is being used, and have any desired details erased from a register.

These things have traditionally been considered sufficient for those maintaining person registers, but the EU's new General Data Protection Regulation – advertised as the strictest in the world – will give people the right to see and distribute their own personal data.

Data must be available in a reusable format, so that it can be used in the desired manner. Individuals must retain the right to automatically transfer data to third parties, for example, by providing the health data collected by a heart rate monitor manufacturer for use in research.

"When people have the right to see and distribute their own personal data, this will open up brand new opportunities for the development of both public- and private-sector services," says CSC Director Paula Merikko.

MyData conference sought information management solutions

On 31 August–2 September, about 600 researchers, engineers, corporate representatives, officials and social activists from around the world met at Helsinki's House of Culture to discuss the handling of digital personal details and the future of the personal data economy. The first ever MyData conference also tackled human-centric personal information management in research and education.

You are you, even when you change jobs

Identification solutions for IT systems are usually based on for example an educational institution or employer giving the user an ID, with which they can use services. These types of solutions are not necessarily particularly flexible, as the links between people and their data are broken after graduation or changing jobs, for example.

"Human-centric identification solutions allow anyone to submit an online application for their own ID," says CSC Development Manager Sami Saarikoski. Saarikoski's team is developing the Eduuni ID solution, which allows users to choose how they want to log into e-services.

"A human-centric identification solution also enables smooth and transparent personal data management, as well as business based on MyData," says Saarikoski.

Who can handle your health data?

More and more health and wellbeing data about every one of us is accumulating in both public IT systems and services provided by private companies. This data could also be better harnessed for research, but the handling of sensitive data requires very tight security.

"We already have services for managing electronic user permits, as well as cloud environments suitable for the secure handling of health data. The functionality of these systems could, for example, be directly harnessed in the management of Finnish genome data or for using register datasets in research," says CSC Director Antti Pursula.

For example in the REMS system, the owners of the data can give permission for their own data to be used in research, or authorities can grant and monitor user rights to datasets. Secure network solutions enable remote access to datasets, and reliable cloud services keep the data in Finland.

Researcher identifiers relieve copy-paste anxiety

ORCID identifiers help to distinguish researchers from each other – even those with the same names – and link research output to its creator. Linking ORCID identifiers to a variety of services and systems makes researchers' lives easier, as information is transferred automatically and more quickly.

When it comes to researcher identity management, the ORCID identifier is a good example of a more human-centric solution. When researchers create their ID, they decide who can update, handle and use their data.

"These identifiers enable us to make the entire research process more transparent. It's also important to develop ways to identify the various outputs from a researcher's work, and to gain recognition for them," says Josh Brown, ORCID Regional Director, Europe.

Many researchers gave a sigh of relief on hearing that, for example, they no longer need to manually copy their personal data from one system to another when applying for funding. Instead, financiers can now automatically obtain publication data.

The Ministry of Education and Culture has tasked CSC with implementing a national research data warehouse that will enable a variety of services and processes to access its data from a single source.

"Our goal is to collate all the data that is collected about research. This means, for example, publications, datasets, projects, infrastructures and researchers. Implementation will be launched this autumn and all sub-sections of the data warehouse are scheduled for completion by 2020," says CSC Development Manager Hanna-Mari Puuska.

What happens to your study data when you graduate?

The VIRTA higher education achievement register contains information on a total of 1.3 million degree students. This data is already being used in systems that make learners' lives easier, but allowing people to access their educational information – for life and across organisational borders – would create opportunities for completely new kinds of services.

"There are still many important issues to be resolved, such as how and on what terms and conditions would access to registers be granted, or what information security requirements to demand from new private-sector service providers," says Paula Merikko.

One good example of the expanded use of study data is a solution implemented in the EMREX project – it enables exchange students to electronically transfer their own study achievements between higher education institutions in different countries.   A start-up company from Oulu is also developing a mobile contact app for students and higher education institutions.

"There's a constant stream of new ideas for services.  For example, students no longer have to queue up every autumn at a customer service point to show their student cards as proof of their right to receive a student discount on public transportation. Instead, they can send their data to the local public transport operator directly from the VIRTA higher education achievement register," says Merikko.

 

Read more about human-centric personal data management on the MyData conference website: http://mydata2016.org/about

 



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