Studies with portable data – medical research only for the rich?

Apple devotes a lot of space to the areas of health and fitness at its events. The company likes to show how much science lies behind its smartwatches and health apps. The fact that they can collect data for science with their consent is also a marketing feature.

For example, over 400,000 people participated in data collection for a heart health survey. The problem with this is that people who can not afford Apple Watches and fitness trackers are underrepresented in these surveys.

Young, white, educated users

“Unfortunately, this affects a large part of the population, at least in the United States. For them, this is a luxury item. For $ 300, they are considering whether to spend the money on rent, whether to buy food for the family or new clothes, ”says Yashoda Sharma.

Sharma and a team of researchers from the National Institutes of Health, an agency of the US Department of Health, pointed out that most users of gadgets like Fitbit or Apple Watch are young and white, have higher incomes and a higher level of education.

This so-called “digital health gap” – the gap between people who use digital health technologies and those who have less access to them – distorts the research data that can be extracted from wearables. The danger is that at the end of this chain, there is poorer health care for groups that are already marginalized. There is a system for this bias in research. Example: Pulse oximeters – the small devices you cut at your fingertips.

risk of distortion

“There are many studies that show that these oximeters are not good for measuring blood oxygen saturation in people with darker skin,” says Sharma. “Because of the survey results, the U.S. Food and Drug Administration issued a warning about these devices. They are widely used in clinics and people use them at home as a supplement between their doctor visits. Especially during the Covid pandemic.”

Cornelius Remschmidt, epidemiologist and chief physician at nonprofit Data4Life, has high hopes for portable data despite the risk of bias. It is a simple method to be able to determine movement data, heart rate, blood pressure and in the future many more values ​​using your own smartphone without having to go to the hospital. Therein lies a great opportunity.

“We know that health is very closely linked to social status. Of course, it will not be any different with wearables. But it is still a good way to make healthcare more democratic. Once we learn how to handle this portable data, ”Remschmidt is convinced. “And we must not forget that smartphones can already do a lot and are very common, much more than wearables. Therefore, we should not miss the opportunity to use this valuable data. “

More and more studies are using portable data

The rapidly growing number of studies in this area shows that portable data will play a major role in the future. Research teams are investigating, for example, how burnout and heart rate are related or depression and the number of steps per day. Many of these studies are still about getting to know these new datasets and the question of whether they are actually useful for research, says Cornelius Remschmidt.

Portable data is still a new resource for medical research. But it comes with known issues. The selection of study participants and the risk of distorted study data is one of them. For a long time, women were systematically underrepresented in surveys. It counteracts gender medicine now, ”as we have underestimated research for decades and only became aware of it through targeted work in the field. That is why it is very important to take this into account right from the start, “says Remschmidt.

“But I think you can solve it if you work systematically, by saying that you start by looking at this wearable data and then see: Can it be transferred to all groups, all areas, is there some kind of underrepresented group? And then you have to carry out the investigations there. ”

More active search for more diverse topics

Yashoda Sharma sees that researchers have a duty to search more actively for various topics and to facilitate their participation. In the case of wearable data, this means that the devices are made available to the participants for research to also include the elderly or low-income in the surveys. Science must go to the people.

“Instead of saying it on flyers and in advertisements, we do a survey here and wait for people to come to you, go to the communities, in the United States that would be clinics for low-income people, churches, schools, libraries, where normal people go about their daily lives. “

In Germany and Europe, the scientific use of wearable or fitness tracker data is heavily regulated by the General Data Protection Regulation. But the corona pandemic has further sparked the debate over the use of health data.

This week, the European Commission launched an initiative for a “European data space”. The exchange of health data between EU countries and with science should be facilitated. A challenge will therefore be to balance research interest, privacy protection and participation.

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