Originally published at: New Nextcloud health app doesn’t sell your data – Nextcloud
There is a whole wave of new apps becoming available that can store your electronic health records from hospitals or doctors. As health data is easy to monetize, these apps tend to be “free” for users – insurance companies are happy to pay for it. The Kailona app is here to offer a real alternative. It supports the standards used by doctors and hospitals to exchange data, and gives you the ability to decide who to give access, to what and for how long.
What it does and why
The Kailona app basically does three things:
- receive data from your doctor, hospital and other medical care providers and store it securely
- let you view and learn from this data to track and improve your own health
- allow you to share, 100% on your terms, with health care providers, friends or even medical research organizations
To explain why this matters, our press release quotes Armin Moehrle, one of the founders at Kailona:
Nobody chooses to get sick, so nobody should be discriminated against on the basis of their health data. We aim to put people back in control over their health data, rather than have it be exploited for economic gain.
Personal health data is being exploited and used to discriminate against people, devastating their ability to find jobs, insurance coverage and economic stability. Governments, device makers, and software companies are handing out your health data for corporations to exploit. Many health related apps have revenue models are based on selling the data to insurance and pharmaceutical companies and users are not made explicitly aware of the consequences of using these apps.
A better world would be one where users control where their data is and who has access by themselves, rather than have it sold without their knowledge. Kailona is a step towards this world, offering a place for your data that can be trusted.
Getting health care data
Health care providers in most countries are obliged to provide patients timely access to their health records. Unfortunately, many providers do not comply with these requirements and even if they do, they provide incomplete data on printed documents, CDs and DVDs. Very often patient medical data is transmitted in a fashion that compromises privacy, such as sending health reports through email. New legislation in Germany requires providers to share all health data in digital format with the patient. Supporting this standard, Kailona provides a mechanism for patients to request their health records and keep track of compliance with the legislative requirements of the providers. These standards are generally supported globally, being used to transmit data between doctors and hospitals, so it is likely you can get some if not most of your medical data this way in most countries of the world. Of course, simple file transfer of PDF’s is also supported.
Improving your health
Users can use the data to gain insight in their own health. You can record and track a variety of data, and even view medical images with the Nextcloud DICOM viewer. This way, you can work on improving your own health, especially in areas not well taken care off by traditional medicine. The medical industry sequences genomes, gathers billions of data points, and generates countless medical images, but that does not always cover everything that is important for your health. Physical activity, nutritional data, mental and emotional data are critical missing pieces and Kailona gives you the ability to explore and learn from those, too.
To quote from the Kailona Prototype Fund page:
At the most basic level, everyone knows that they need to exercise more, eat healthier food, get quality sleep, and consume less alcohol. However, people rarely change just because they know they should or are told to do so. Instead, when people experience for themselves the connection between physical activity, nutrition and well-being, they are likely to maintain positive behavioral changes. And with these sustained and healthier behaviors, the human body has an incredible potential for self-healing.
Kailona allows people to systematically manage activity, sleep, weight, nutrition, supplements, vital signs, lab results, medical images, pharmaceutical, genomic data and data about the mental and emotional states. Visualization tools allow people to understand the relationships between the data and encourage them to make healthier choices. Kailona is an opportunity for people to discover paths towards self-healing.
Sharing your data
Sharing is key for medical data. Your doctor or hospital might need access, and you might want to share with others, too, in a secure and very controlled way. Kailona empowers users to control access to their health data for their own benefit, their communities and society at large! Let us quote again:
Kailona enables people to securely share their health data, whether it be with their inner circle of friends and family or as an anonymous participant in research endeavors. This empowers people to leverage their own data to benefit themselves, their communities, and societies at large. By sharing an anonymized version of health data with the research community, people accelerate innovation in diagnosis and treatment. Furthermore, many patients find strength when they know that they are not alone in their diagnoses, but rather that they are a part of a larger community of patients and passionate researchers searching for effective treatments. Sharing an anonymized version of one’s health data allows researchers to make faster progress with effective treatments. Kailona also opens the possibility to connect with other patients and find support at whatever level of anonymity feels comfortable.
There are several levels of anonymization. On one end of the spectrum is re-identifiable data. On the other end of the spectrum is completely anonymized data, such as synthetic data that consists of simulated data not based on any real-word individuals or events. Creating synthetic data is particularly important in preventing re-identification of complex data, including medical images and DNA sequences.
The Kailona team is proud to be sponsored by the Prototype Fund, a project of the Open Knowledge Foundation Germany, funded by the Federal Ministry of Education and Research, and TOCA. Learn more about the project here (in German).
Get it now
The app is in our app store but also requires a FHIR server, provided by the Kailona team as a docker container. We will try to make it easier to install, but we also know not everyone runs their own server!
So we worked with four providers to give you near-immediate access to your own, trusted health care data store:
- The Good Cloud in the Netherlands
- hosting.de in Germany
- Qloud by Qinetics MSP in Malaysia
- Tab.Digital in Latvia
They already have the app running or are in the process of getting it working. You can sign up with their services in just a few clicks through our Simple Signup program! Get your account at hosting.de directly, for now. With this you have a choice of quality providers that give you a free account and are located close by. Plus, we expect the other hosting providers to offer the app as well, over the coming weeks or months. Ask them about it if you are interested!
We hope Kailona will help you regain control over your health data and keep it safe. For techies, you can get involved with Kailona if you want to help make this happen for more people! There is also a forum to discuss Kailona and ask questions.