Who should own our health data?

The amount of available health-related data is exploding. The increase is driven by both healthcare data, such as electronic medical records, but also user-generated data, such as activity and sleep profiles collected by wearables. The available data is set to more than double every two years until 2020, according to a study by EMC and the research firm IDC. This translates into a 15-fold increase between 2013 and 2020. If one imagines this amount of data stored on tablet computers, the resulting stack, which in 2013 is around 8,800 km high, would be more than one third of the way to the moon by 2020.

Integrating and analysing this data opens a multitude of opportunities to create awareness, engage individuals and ultimately support them in making healthier lifestyle choices. One example could be truly personalized recommendations for healthier food choices. Genomic data would provide information on predispositions such as metabolic effectivity, allergies or insulin sensitivity; electronic medical records give the current health status; activity trackers estimate energy expenditure; and food scanners monitor the intake of macronutrients. By integrating these data sources with personal data, such as a social media feed or a personal agenda, users could receive recommendations: cut back on the sauce at lunch today, because last night’s dinner was quite fatty, but have an extra portion of rice, as you’ll need the energy for tonight’s football practice.

At the moment we’re not making the most of these opportunities, mainly due to the lack of access to raw data, particularly if raw data from different sources has to be integrated. The current health ecosystem is actually fragmented into a number of silos. Access is hampered by both technical issues, such as incompatible systems and platforms, as well as regulatory hurdles driven by privacy concerns. And even if technical and regulatory hurdles can be overcome, there is still the question of who owns the value derived from data integration.

We are currently at a fork in the road, with two potential ways forward:

Open platforms: The user is in charge of the data and can give access to service providers, who connect to the open interfaces of the platform, on an as-needed basis. The platform provider can either provide a repository where the user data is centrally held or data can be stored decentrally.

Vertical integration: Players create proprietary, closed systems where they integrate the different data sources that they control.

Key players in the market, such as Jawbone, Fitbit or Apple, have started to build proprietary systems that integrate different sets of data. While these systems have open application programming interfaces for third parties, data is stored (and hence controlled) by the system owner, who also sets standards for formats. Given the sensitive nature of health data, it seems unlikely the public will feel comfortable having their electronic medical records stored on corporate servers.

A truly open system, on the other hand, would allow for this sensitive data to be stored on servers belonging to trusted parties; they could even self-host it. Lower barriers to entry also allow for greater innovation and standards are likely to emerge based on a pragmatic “if it works, let’s use it” approach. In this model, data integration is a service that can be commissioned and will come with a clear price tag rather than being paid for in kind, i.e. by granting companies control over personal data.

Data has been referred to as the oil of the 21st century, a crucial and valuable resource. As more of us start to recognize the value of personal data, we will start to demand control of it – either by voting with our feet or through the regulators.

Data integration and predictive analytics is an emerging field and as such regulators do not understand which developments will be crucial and how all this will affect our societies. In fact, only between 25% and 33% of the available data is expected to be valuable if analysed, and the exact nature of this value is still largely unknown.

The best way to find out where the real value of integration lies is therefore to experiment. By building offerings and analysing the impact on people’s behaviour and lifestyles, we can gain experience of what works, which offerings are financially sustainable and how they impact our lives, both positively and negatively. These data points will not just inform the business models of the future but will also help regulators create the right conditions to maximize the positive impact of these new technologies.

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Authors: Norbert Hültenschmidt, Partner, Director and Head, Healthcare Practice, Europe, Middle East and Africa, Bain & Company, Switzerland; Eva-Maria Hempe, Project Manager, Global Health and Healthcare, World Economic Forum

Image: Doctor Andy Chiou debrides a leg wound on patient Larry Kirk in Peoria, Illinois, November 26, 2013. REUTERS/Jim Young