Security important for storing health data

Security has been regarded as very important in EpiHealth, a research collaboration between Lund and Uppsala universities. The project’s register currently contains data about 18 000 people between the ages of 45 and 75 in Sweden. The aim is to study connections between genes, lifestyle and environmental factors and the most common non-communicable diseases among middle-aged and elderly people, explains Professor Sölve Elmståhl.

What is being tested on the participants?

“We conduct a questionnaire and a test involving numbers and letters that measures the brain’s processing speed, we measure heart rhythm, blood pressure, height, weight, lung function and body fat, and we take a blood test.”

What happens to all this data?

“The data is saved in a database from which researchers can extract the information they need for a specific project as soon as it has been approved by the Ethical Review Board. The blood samples are stored in a biobank at Karolinska institutet in Stockholm.”

What about security?

“All the data is encrypted. Names and personal identity numbers have been replaced by serial numbers, so that only the person in charge of a study can find out who is who in the register. The material is also protected by a firewall that prevents unauthorised access.

“For extremely unusual diseases, it would theoretically be possible to identify an individual without their name. There is perhaps only one woman in place X with unusual disease Y that shows up in our tests. However, we are only studying major non-communicable diseases, so that issue is not relevant for us.”

But DNA from the blood sample can always be used to identify a participant?

“Yes, but then it must be possible to match a specific blood sample to a specific person. If you only have the blood sample you can indeed obtain a genetic profile, but you still don’t know who the person is.”

Have the topics of research already been decided in advance?

“We have a permit to study around ten chronic diseases including depression, obesity, pain, cancer, dementia and diabetes. If other researchers want to investigate other issues, they first need to obtain ethical approval and then to inform the participants about their project.”

So, do they then write to all the thousands of participants?

“No, that’s not possible. In such cases, the Ethical Review Board usually allows us to inform people through advertisements in the newspapers and on our website. Those who don’t want to participate in the new project then have the opportunity to withdraw. However, we know from previous experience that this happens very rarely: those who have agreed to participate in a study once usually continue to be involved.”

The aim is to get 300 000 participants for the study. Has it been easy to get people interested?

“In Malmö we have asked people aged 40–75 selected at random from the population. Around one in five have agreed to take part. That is fewer than for Good Ageing in Skåne (GÅS), another population study that I run. For that, three in four agreed to take part.”

Do you think the younger people that EpiHealth wants to attract are less willing to give out their health data?

“No, I think it’s more to do with time – people aged 40–50 find it more difficult to make time for the study. It may also have been easier to attract participants for Good Ageing in Skåne because it’s an older and more well-known study, and because it provides participants with both a major health review and a medical examination. We also do home visits for those who have difficulty getting to the clinic.”

Text: Ingela Björck