Engineering Solutions for the Future Data Economy in Healthcare
Head of Partnerships at TX
The growth of the medical Internet of Things (IoT) market and the accelerating drive for truly personalised health has led to a boom in the development and consumption of wearable devices that are produced to measure attributes such as personal heart rate, steps walked, blood pressure and other useful data of citizens.
According to Gartner, shipments of smartwatches, which at present sit at the top segment of all wearable devices, are forecast to grow from 74 million units in 2019 to 115 million units by 2022, with other devices such as “hearables” forecast to grow at an even faster rate to take top spot at 158 million units by this time.
As the number of units grow, so will the monitoring functionality available through these devices. We’re already seeing this in the area of sleep tracking. Fitbit recently introduced a new blood oxygen monitoring function on some of its devices, which can be used to detect breathing variations during sleep and help in future with sleep apnea diagnosis. It’s also widely believed that Apple’s next big functionality upgrade for its Apple Watch in 2020 will be some form of support for sleep tracking.
In line with this growth of both the number of units and the respective utility of the devices, we’ve seen increased adoption of wearables for multiple use cases in the healthcare sector in recent years. Take the example of clinical trials, a search by Citeline’s TrialTrove of drug interventional trials revealed that 255 trials had used wearable devices such as a Fitbit, smartphone or actigraph. It also found 47 different pharma companies sponsoring their adoption, including some of the biggest PharmaCos in the world, such as Johnson & Johnson and GlaxoSmithKline. Other use cases have revolved around in home rehabilitation programmes where the aim is to reduce the rehospitalisation rate. One example of this was Samsung and Kaiser’s co-developed cardiac rehab programme which demonstrated a significantly reduced readmission rate to the national average in the US.
“Emerging trends point towards citizens becoming more active participants in the management of their health, rather than just passive recipients of information and advice.”
These emerging trends point towards citizens becoming more active participants in the management of their health, rather than just passive recipients of information and advice. Indeed various surveys have confirmed that patients would be willing to provide access to data for research initiatives. An opportunity therefore presents itself to provide the tools to increase citizens’ direct control on health and lifestyle data produced via their wearables. The existing situation is that data collected by these devices is often owned and controlled by the device manufacturers. Citizens have a limited ability to make this data available to support initiatives like preventive health interventions on populations, pharmaceuticals R&D, clinical trials, pharmacovigilance etc, and on the opposite side many companies and researchers have problems and high expense in obtaining the data they need.
At TX, we can engineer solutions that leverage components of the Streamr Technology Stack and mobilise populations to open up and share their wearables data. The Stack includes a P2P real-time data transfer layer and a unique data monetization layer which enables a new collaborative revenue sharing model where citizens can contribute the data they’re producing from their wearable devices into an aggregated data product or package, and share in the value generated from the sale of this data with integrators, app developers or device manufacturers. This revenue sharing model, called Data Unions, can act as an incentivization mechanism for generating population-level health data for multiple use cases in the sector.
So how might this solution look in practice? A mobile application would be developed that receives user device data either directly by an SDK level integration or from a 3rd party ecosystem via an API. The app would allow an individual to opt-in to send their wearables data over Streamr’s open P2P network to a Data Union in a data marketplace. This could be the current Streamr Marketplace, or a private or whitelabelled marketplace more specific to the health and medical sector. The Data Union could focus on a specific population, for example Apple Watch users in Barcelona, or a specific subset of the population with a particular condition or within a particular risk profile. An administrator (Product Admin) which could be the owner / developer of the app would take responsibility for setting the terms of the Data Union including its price, scaling it, managing its existing members and marketing the data product to specific buyers. Once a buyer pays for access to the Data Union within the marketplace, Streamr’s Monoplasma software acts as a scaling solution for one-to-many payments, enabling revenue sharing through Streamr’s ERC-20 token (DATAcoin) between individual data producers and the product admin.
“Our EU Horizon 2020 project, KRAKEN, will provide a platform capable of directly connecting to citizens to collect, share and monetize their wearables data, whilst allowing them to easily assert full control over the data they’re producing.”
In collaboration with our partners at Lynkeus, we’re also aiming to take this infrastructure to the next level with regards to providing a solution for greater individual control over citizen’s device-generated data. When we talk about data gathered from wearables, much of this is often sensitive data, so there is also a need to ensure compliance with applicable data regimes such as the GDPR in Europe. Security and privacy of personal data are at the centre of key strategic efforts of the EU in the building of a European data economy, and its recently published communication “A European strategy for data” also alludes towards the potential enhancing of Article 20 of the GDPR to improve portability rights of individuals to give them more control over who can access and use their device-generated data.
With these requirements in mind we’re currently engaged in work to extend the Streamr infrastructure into an open, community-driven biomedical data exchange as part of the EU Horizon 2020 project, KRAKEN. Within this project we will integrate with components from another past EU Horizon 2020 project, MyHealth-MyData (MHMD), which includes a dynamic, GDPR compliant consent app for individual citizens. This will provide a platform capable of directly connecting to citizens to collect, share and monetize their wearables data, whilst allowing them to easily assert full control over the data they’re producing in terms of which parts of the data can be accessed, by whom, for what purpose and also providing the option to withdraw consent at any moment.
If you’re interested in learning more about any of the items discussed in this blog post or have need for a similar solution to the one described please feel free to reach out to me at firstname.lastname@example.org.
This article was originally published on Medium.
KRAKEN: We’re returning the control of data back to users with a marketplace for personal data
The EU H2020 funded KRAKEN project aims to enable the sharing, brokerage, and trading of potentially sensitive personal data in healthcare by returning the control of this data to citizens throughout the entire data lifecycle.