Ideas for solving the challenges of data in healthcare

More and more healthcare data is available, but is it used to its full potential? 

In this interview we analyse data use in healthcare (from the collection of data to its final use) as we dive deeper into the Data Value Chains theme in Hack Healthcare 2021 with the help of Elfi Goesaert, a researcher working on the promotion of professional data-driven healthcare at the data science department of VITO (Hack Healthcare partner hosting this theme and challenges).  

Our goal in this area during Hack Healthcare is to construct new value chains for collecting and sharing patient data in secure and ethical ways to improve the work of healthcare professionals, the results of medical trials and the services those patients get. We aim to advance non-commercial and commercial uses, with a high potential for all by working for everyone’s benefit. 

To tackle this theme, we have identified three challenges: 

• Fitness aficionados gateway: to allow digital fitness aficionados to collect and connect data from a variety of sources in a single data collection gateway, to build personalised dashboards, and to run standardised and individual analyses.

• Rare disease data: to enable rare disease patients to proactively share medical and real-world data towards researchers, pharmaceutical and medtech companies through a central, trusted gateway in an easy-to-use, ethical, and GDPR-compliant way. Patients would also have full access to their data, information on how the data are used, and research results.
• Clinical trials recruitment: to assist pharmaceutical and medtech companies in recruiting patients and healthy citizens for clinical trials by establishing and populating a database of potential trial participants across a wide variety of conditions, and enabling trial organisers to identify the right trial participants and contact them in full respect of ethical principles and privacy.

What are the business opportunities that come to your mind for these challenges? Share them with the other participants!

How would you define data value chains in healthcare?

I see data value chains as a way to connect health data that is at this moment spread out and hard to combine. Patients, health care workers, governments, scientists, and innovators lack access to data necessary to improve health on a personal level, and most importantly citizens (patients or not) lack control over these data. 

What underlying problems do data value chains solve, and what is the scale of the problem?

We want to give back control to people over their own health data, so they can share information with a variety of stakeholders that can create personal value for them.  For example, sharing information with healthcare workers to improve their care, giving access to policy makers to improve the local infrastructure to support healthy living, etc. 

This approach can drive innovation as well. In our current data system, data is owned by the big players who collect data from people. A lot of information is spread out: each application now collects and stores data. 

To innovate, we need to be able to combine data in an efficient way. So separating data from applications, and storing these data with the people that generated the data in the first place, allows us to combine different datasets and create innovations in health on a personal level. 

What are the biggest healthcare data value chains challenges to overcome?

The idea that the data belongs to the people isn’t new, and it is gaining momentum. In healthcare, the focus is more and more on putting the citizens (patients and not patients) at the center of their own health. 

This has been limited, however, to giving one-way access to information that has been collected. Actually giving people control and a way of sharing or adding information on their health is quite new. 

There seems to be this persistent idea that people aren’t ready or interested in having this control. But we believe that if people are guided in this process, and if the right mechanisms are in place, this is absolutely an option that they will embrace. 

Another challenge is creating an environment and platform where people can exercise this control, and what system they would trust to store and control their own data. Belgians have a natural distrust of  governments controlling their privacy and data, and large corporations aren’t trusted to handle this kind of platform. 

That is why we believe that a participatory governance structure, where citizens can participate and control the decision-making process and management of the platform, can create the necessary trust to overcome this challenge. 

Lastly, up until now, having the actual technology to make this a reality has been lacking. With upcoming SOLID technology, where personal data can be stored in pods, and where the underlying idea is giving people back control over their own data, we have the technical tools in hand to tackle health data in an entirely different way. 

Whom do you expect to take the lead in constructing data value chains in healthcare? 

At VITO – together with important partners in the health sector, such as Domus Medica, Zorgnet Icuro, Vlaams Patiëntenplatform, and Koning Boudewijnstichting/Fondation Roi Baudouin – we are taking the lead to make the personal data platform a reality. We think it is important that we join forces to create societal change and give the control back to the citizens from a not-for-profit angle. 

That said, it can only become a reality if there is support from all stakeholders to get a project as large as this going. From a government standpoint, this is a way to push health and innovation in a new direction, and it can lead to better policy decisions. 

Healthcare workers can gain insights in their patients’ life goals and lifestyle, and provide better care. Research institutions can combine data sets to more efficiently set up research questions, and businesses can develop new goods and services that are tailored to people’s needs. 

We are creating top-down momentum, but are also pushing for concrete use cases that show how this system can provide the necessary change and innovation. So, bottom-up we are also working on concrete use cases focused on healthcare policy, personalized health and innovation, to show how this could work once it is fully up-and-running.

How do you expect the construction of robust data value chains would impact care delivery in the short, medium and long term?

 

In the short term, we are working on concrete use cases in personalized prevention and life goals. By working at Hack Healthcare on the challenges we’re bringing to the event, we hope to set up even more concrete use cases, to create more impact. 

In our cases, we are putting people in control of their data, and allowing them to share these data with health care workers, researchers and local governments. We are hoping to demonstrate in the short term that this exchange of information will improve the care people get from their health care workers, and allow local governments to optimize infrastructure and services to improve citizen’s health. 

In the medium term, we want to elaborate these cases and link them, to add applications and to increase the complexity of the system to add more relevant applications and solutions. 

In the long term, in a system where people have control over all their health data, we expect a strong growth of innovative solutions where personalized care becomes self-evident.  

What needs to happen to create robust and productive data value chains?

Firstly, to set up the personal data platform technically as well as create the governance structure to maintain the platform. 

Secondly, a number of use cases from different fields (health care organizations, local governments, research, innovation) to create added value for the data platform and to set up working data value chains. 

Thirdly, to create awareness in citizens, policy makers, innovators and health care workers, to entice them  into using the system fully. 

Lastly, to look at the European level to expand the platform into a fully working system that has international impact. 

Is data protection preventing or slowing down the development of data value chains in healthcare?

Data protection and privacy are important, and creating trust to use data in an innovative way is a big part of our end goal. We don’t see it as a trend that slows down the development of a personal data platform.  However, GDPR has actually created an awareness that people need and have a right to their own data. 

We want to use that momentum and awareness to show how important a personal data platform is, and how the concerns for privacy can be solved in this system: by separating data and applications, innovation can speed up and become more personalized, without people having to give up control over their data. 

Additionally, we see that more and more organizations have concerns on how to manage and safely store personal data. Being able to develop algorithms and develop value-adding services without the security concerns over handling and storing the data can be a way of putting the focus back on innovation for them. 

What has been the impact of Coronavirus on data in healthcare systems? 

I think the pandemic has revealed how necessary it is to start combining data, and that it isn’t easy to get the relevant data together and to run relevant analyses.

There is a need for further digitalization, but at the same time alongside with the big impact that the pandemic has had on people’s personal lives, it has also impacted their trust in sharing data and increased the worry of losing control over their privacy. 

By creating a trusted, privacy-oriented environment where people are in control of their own data, and by enabling them to share that data with policy makers, healthcare workers, scientists and innovators without relinquishing this control, we can counter this tendency and achieve quick access and innovation. 

How can others help to make this a reality? 

The bottom-up aspect, to actually develop use cases and make this a fully working system that benefits all stakeholders, is a big part of the personal data platform, and necessary to link the data value chains together. 

We not only want to create awareness and have people believe in this new approach, but also to have all stakeholders actively involved in making this happen: creating use cases, linking cases, creating better health care and innovations.

While we are working on people having personal data pods, this is a community effort. That is why our project is called ‘We Are’, because from individual data we want to build knowledge to improve health in society, and that is something we will have to do together. 

About VITO

VITO is an independent Flemish research organisation in the area of cleantech and sustainable development. Their goal is to accelerate the transition to a sustainable world, with a focus on research in sustainable health, chemistry, energy, materials and land use. 

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