Big data in healthcare: a cure-all for medicine or an instrument of inequality?

Big data is in the ascendant in medicine. On this point, there is agreement among industry players and observers. We have increasingly powerful hardware and software, which make it possible to analyse the increasing amounts of data we are getting from billing and treatment records, test results, and most recently, from fitness trackers. For the most part, this data is already in digital form.

However, the challenge is not merely to describe this state of affairs; it is to answer the question of who will benefit from the growth of big data, and how. A discussion round hosted by the Alexander von Humboldt Institute for Internet and Society on the topic in mid-February also showed this. Medical researchers, in this case Christof von Kalle, cancerologist, especially emphasise the possibilities that are emerging: big data is a step towards individualised treatment. Instead of making an educated guess at the correct treatment, doctors could identify what will probably be most effective for each patient using a data analysis of his or her physical and disease characteristics. Cancer prevention could also be improved by identifying risk factors.

The insurance funds also see great potential. Christian Klose, managing director for the AOK Nordost market, particularly stressed the importance of big data as a driver of innovation, which could lead to improvements in preventative care. By analysing and linking various kinds of data, health insurance providers could also recommend the best medical care for specific diseases to their members and recognise billing fraud.

So, is big data a cure-all for medicine? Ingrid Schneider, a political scientist at the University of Hamburg, who has spent several years studying the impact of technical progress, has her doubts. In research there is a risk that, given the amount of data, mere statistical correlations could be misconstrued as causality. More seriously, even if big data may bring opportunities for better treatment, there are potential risks of big data for individual citizens – or in the case of healthcare – for patients. Schneider fears that power will shift to the detriment of patients, who might be subject to greater control in the future.

To illustrate her criticism, she used the current trend towards fitness trackers. Depending on the model, these minicomputers, which are usually worn on the wrist, may record the heart rate, quality of sleep, daily step count or body fat. Wearables of this kind are a big growth market, said Schneider. People primarily use fitness trackers to have more control over their own bodies and their own health. Curiosity is also an important purchasing motive, according to a YouGov survey from last year that Schneider cited. According to this survey, a majority of users would also agree to grant third parties access to their data – but only selected ones. While about two-thirds of people would approve data use by their GP, only a quarter wants to pass their data onto their insurance company and almost none would agree to pass their data on to their employer.

Nevertheless, the insurers have a keen interest in fitness data: Jens Baas, CEO of insurer TK, caused a stir in early February when he suggested storing this data in members’ electronic patient files. Schneider sees a danger in such ideas: “Up to now, fitness trackers have been gadgets: you can wear them or not. However, the more they are integrated in systems, the more the question of voluntariness arises.” Does the purchase come from a desire to exercise self-control or does social pressure, pressure from health insurance bonus schemes or from the employer play a key role? Schneider described cases in the US where companies were already pushing their employees to wear fitness trackers to get cheaper group rates from insurance companies.

The political scientist warned: “We must be careful that such gadgets do not erode the principle of solidarity.“ Up to now, at least in the statutory health insurance funds, solidarity has been at the core of how we insure the risk of illness. Age, sex and risk factors have not affected the fee level. Schneider sees a risk that the use of big data could lead to social sorting, the identification of risk groups based on certain characteristics, who are then required to pay higher rates. In addition, this tracker data may lead to the attribution of diseases to the individual’s health behaviour, while social and environmental determinants would be ignored. In the future, diseases could be seen as self-inflicted, and in extreme cases, people who do not do something for their health on an ongoing basis could be excluded from insurance plans. “They forget that health has a lot to do with fate”, laments Schneider.

As an insurance professional, Klose is naturally more relaxed when it comes to the topic of fitness trackers and stressed that he does not believe that this could become a requirement. AOK put out an app in January that allows members to collect bonus points for tracked fitness activities; these bonus points can then be converted into cash or gift bonuses. The aim is to reward participation, not to punish non-participation. “These are two sides of the same coin”, Schneider responded.

Another problem for the patient, which must be resolved when using big data, emerged in the discussion of data privacy. All three discussion participants stressed its importance, however, to different degrees. For example, von Kalle explained that data privacy should not be extended to the point where patient protection against disease loses out.

Privacy is also an important building block to gain broad support for big data usage. Without the feeling that their data is in trustworthy hands with the data users, such as insurance funds or medical research institutions, many patients will hesitate to consent to the use of their data, for example, in programmes for the chronically ill.

Currently, most of the individual data that could be used as part of big data is hosted on servers beyond individual access and control – by insurance funds, hospitals or fitness tracker manufacturers. Accordingly, patients have to rely on them to not misuse their data, for example, for commercial purposes. Although there is legislation against this, Schneider pointed out that tracker data is stored in the cloud, and that their servers are often not located in Germany or Europe and are therefore out of the reach of local laws.

The privacy policies that patients and users have to sign prior to transmission of their data only offer weak protection. Since these policies are often extremely long and peppered with complex legal formulations, the exact transfer rules are often a mystery for consumers, and users typically have to give consent without having read or at least without having understood these provisions if they want to avail of the services. The only ultimate solution to this is concrete legal provisions – and the consistent implementation of the existing rules.