'Every patient has their own story – and their own data'
"A civic platform for health data creates tension. Health data suddenly ends up outside of the healthcare sector. How can you know which platforms will handle your data with care, and which will not? That is proving difficult.", says Maartje Niezen, researcher at the Rathenau Instituut. Together with Rosanne Edelenbosch, researcher at the Rathenau Instituut, she took a closer look at civic platforms.
Download the report Health at the Centre.
A civic platform is founded by civilians: "Often, these platforms are made with the best intentions, to improve the health of our society and take medical science one step further by bringing us into contact with our peers.", says Maartje Niezen. If the civic platform uses ICT applications, it is a type of e-health.The difference with other types of e-health is that civic platforms are initiated by civilians.
In the report Health at the centre, we look at different types of e-health. These entail more than just data collectives. Health apps are a known type of e-health, of which the pedometer or step counter app, measuring the number of steps you take each day, is a well-known example. It also entails PGOs (Persoonlijke Gezondheidsomgeving 'Personal Health Record'). These are digital records in which patients can follow or track therapy. PGOs are used, among others, in the mental health field.
Relevant information thanks to health data
The researchers have looked into two civic platforms: Patients Like Me and MIDATA. "What struck me the most was the fact that patients are so eager to share their health data" says Rosanne Edelenbosch. On the platform Patients Like Me you can share and compare you health data with other patients whose situations are similar. That appeals to many people.
"In science, everything happens according to strict rules and protocols. In medical research, one group is given a placebo and the other the real medicine. All other factors need to be the same for both groups. But in our daily lives it is precisely the unique context of the patient that matters. Every patient has their own story. By telling this story via data, every patient will receive the most relevant information for him or her."
”Every patient will receive the most relevant information for him or her.
A healthier society with data
"Another important conclusion was that sharing your health data, outside of healthcare, can bring society a step further." , adds Maartje Niezen. "However, it is important that when you do share you data, you do it right. It has to be clear who else can access you data, and what this means for the advice the civic platform generates."
The interests behind civic platforms
The interests behind civic platforms and the parties with whom the platform collaborates, can influence the confidentiality with which your data is being processed.
Patients Like Me and MIDATA have different interests:
- MIDATA, being a cooperation, remains the property of its members. "You can compare MIDATA to a big safe, in which people put their data," says Rosanne Edelenbosch. "To protect your data, but also to make the data available for scientific research. A user can choose which research projects can access their data." MIDATA gives you feedback on the research in which your data has been used; but there is room for improvement with regards to this functionality.
- Patients Like Me went from a samll nonprofit organisation, to a large commercial company, that shares its data with third parties such as the pharmaceutical industry. Patients Like Me is transparent on its use of data for non-scientific purposes. However, 'the return on investment for the user is relatively low', is the verdict of the report Health at the Centre.
Not enough guidelines for data use
When it comes to civic platforms, there aren't enough clear, general guidelines on how to use data, or with whom lies the responsibility for managing this. Maartje Niezen: "In healthcare especially we see a trend of improving and refining guidelines. This is visible in politics: there is a new law that allows patients more control over the data. Yet what they haven't given much thought, is how to give shape to this new control."
”Yet what they haven't given much thought, is how to give shape to this new control
Difficulty distinguishing between platforms
For interested users of civic platforms it is difficult to compare and distinguish between them. Even if a platform has an extensive privacy statement, this doesn't cover the algorithm behind the platform. "There are so many possibilities, that it is difficult for users to assess, let alone have any influence over", says Rosanne Edelenbosch. To gain real control over your health data this is a necessity. There lies as of yet too much responsibility with the user to figure all this out. There is no reliable overview of different providers where you can compare them. "You really need to do your homework", says Maartje Niezen.
Tips for assessing civic platforms
If you are thinking of sharing your data, there are a few things you can look for. Maartje Niezen: "Look up, for example, with whom your data is being shared and if you agree to that. Also check whether the platform is transparent on what happens with your data and if they give feedback on this. If, for example, your data is used in scientific research, they are supposed to give you feedback."
Want to know more?
In the report Health at the Centre we researched multiple forms of e-health.