Big data – big opportunities: Pioneer research and biobanks make Oulu the spearhead in global medical research

In 1965, Professor Paula Rantakallio began recruiting expecting mothers in North Finland for her doctor’s thesis, where she wanted to research not only the conditions of the children but also the mothers. Over 12,000 mothers were recruited, and in 1966, all of them gave birth. These children became known as “Cohort ’66”. Why is this important? Well, the study didn’t end in 1966 – they started another round in 1986, and both are still ongoing.

Today, the NFBC, or North Finland Birth Cohorts, have gone through four separate research stages: When the children were a year old, then when they were 14, 31, and the latest just recently at the age of 46. The amount of data grows exponentially: where they previously had a terabyte of data, since the latest round they have ten.

This latest phase started in 2012. “From the original 12,300, we tracked down 10,300 – the rest have moved abroad, declined access to their contact information, or simply died since the last time. We sent them a questionnaire, which took about four hours to fill in.” The project received 6,900 responses, and then started touring from that starting point”, says Juha Auvinen, NFBC 1966 46yrs coordinator. Three teams toured Finland, collecting data, and then fed the data into the project database.

Information galore

Auvinen goes through a PowerPoint with the exhausting amounts of data they collected. “Apart from the usual tests – height, weight, health, blood, urine, stool, saliva and so forth – we also measured memory, we took their X-rays, dental research, we 3D-scanned their mouth we took physiotherapeutic tests, we measured their autonomic nervous systems, pain thresholds, cardio, ophthalmological, allergies, heat…the list goes on.” But that’s not even the best part. With the amount of data now available from the latest testing, the research has spread to other fields of academia.

Several research teams from other faculties besides medicine have taken an interest in the data, conducting further research based on it. “For instance, teams from the field of economic sciences are measuring employment and risk control, among other things, and seeing if these are related to the data we have.” Auvinen seems pleased with the results the project has to offer research, but hopes for more applicable co-operation between the university and the private sector. “For instance, the research has played a big role in determining the effects that smoking has on pregnant mothers and their babies. It was unheard of at the time – smoking was pretty much the norm in 1966. Now we know differently. Who knows what conclusions we can get from a data archive this large in the future?”

Biobanking in 2015

Although an impressive amount of data, the NFBC is not the only means of gaining information on people’s health. The Biobank Act enables the establishment of hospital-affiliated clinical biobanks in Finland. “We’re expecting exponential growth once the studies start, since a lot of the study results lead to new studies, which means more samples, thus more studies, and this generates an ongoing cycle”, says biobank project manager Pia Nyberg. “However, we still have a lot of bureaucracy to wade through – the law on biobanks itself is only six months old. With any luck, we should be up and running by 2015.”

The national network-to-be of biobanks will be a part of BBMRI, a pan-European Biobanking and Biomolecular Resources Research Infrastructure, which was founded by several EU countries. “The point of having a biobank network on a European level is to harmonize the system of biobanks. The idea itself of having a biobank is nothing new, but most of the existing biobanks are privately run. Including hospitals in the network is a new concept, and Finland is leading the way.” The quality of patient data archives and the fact that health care is controlled by the public sector doesn’t do any harm either. “Corporate-owned data collection might seem a little dodgy to Finns, with their trust in the public sector and medical research in general.”

The role of the biobank

Information security will also play a crucial role in the future of biobanks. As specimens need to be patient-approved by law, each patient will be asked for their consent for the use of samples in research and their data to be stored in a biobank. While it’s definitely a factor for the people in general, Nyberg is at pains to assure the public that personal information will be safe. “There could be extreme exceptions of people with hereditary diseases, in which case separate consent would be requested from the sample donors, but other than that, information on identity is practically useless to researchers.”

At the moment, research data has been transferred internationally through national research teams, but that will shift to a more convenient method as biobanks become active. “In the past, if a researcher wanted to get information on where to get data on a specific research focus from, they would practically have to know someone personally. With the biobank network, we will have a geographical database that will tell the researchers where data can be found, and how to apply for it.”

With a massive amount of data, researchers will have options as to what form it will be accessed in. Data crunching and handling big data will definitely play a role in research to come. With at least eight biobanks to emerge in the near future, the amount of data will be staggering. “There will be a biobank in each university hospital – five in all, plus one in Jyväskylä – and two illness-specific biobanks which will collaborate closely with Helsinki University Hospital’s biobank as well as the THL, the National Institute for Health and Welfare, population biobank.” In the future, biobanks will find a more specific role in the national network, such as specializing in a certain type of specimen or methodology.

Nyberg is confident that the biobank network will present companies with business opportunities. “There’s a massive amount of digital and non-digital material that needs to be converted and harmonized, which in itself means a lot of services that need to be organized, not to mention the IT services that a structure like this will require.”