The Kailona team believes that health data should be owned by their subject, not by insurance organizations or businesses looking to extract and monetize its data! By building an open source data store, they allow people to take back control over their health data AND use it to gain insights in their health. This project is supported by the wonderful Prototype Fund.
How to control your health data
In most countries, it is mandatory for the healthcare providers to give the patient all their health records within a certain time frame. Sending and receiving data by physical mail or email has obvious security as well as simple usability drawbacks. So putting you back in control over that health data is not easy. But, in part thanks to legislation and the growing digitalization of health care, there is progress. There is an increasing use of standardized file formats for their exchange of data by the software used by health care providers. And even where they are still using PDFs or obscure file formats, Nextcloud is of course very capable handling normal files, making it a great fit for Kailona to build upon.
The Kailona app provides a mechanism for patients to request their health records from a health care provider and even keep track of compliance with the legislative requirements. The goal is for the Kailona users to always have the most complete health record and have absolute ownership and control over the data.
Sharing health data
Kailona enables people to securely share their health data, whether it be with their inner circle of friends and family, a health care provider that needs it or even as an anonymous participant in research endeavors. The Kailona team believes society would greatly benefit from greater use of health care data, as long as informed consent is given and people are in control over the data. There is an important role for a self-hosted platform here!
Learning more about health
Kailona aims to do more than storing and distributing data. It 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!
Right now, the alpha version of the Kailona app can perform the basic functions like requesting data from a health care provider and storing it, as well as sharing it through standardized API’s. A more complete feature list:
Aggregation of data
- Request data from provider via Nextcloud links
- Import documents via Nextcloud
- Import medical images in DICOM format via Nextcloud
- Import any EHR data in HL7 FHIR json or fhir xml format
- Import activity data in tcx
- Enter blood pressure
- Enter vital signs
- Enter physical data
- Correlate blood pressure and activity
- Review medical images in DICOM format via Nextcloud DICOM viewer app
- Share documents via Nextcloud
- Share medical images in DICOM format via Nextcloud
How to help
The plan going forward is to release a beta, adding some important features:
- Sync with withing blood pressure device API
- Sync with google health API
- Share all data as HL7 FHIR resource
- Status tracking of data request
Your help is now needed: test, review, provide your feedback! You can install the app, request data from your doctor and tell us how the process works.
You can get the app on our app store, and set up a data server, info in the developer documentation.
Find the Nextcloud app here
For those that cannot or choose not to install a Nextcloud server, where will be an instance of the Kailona app on AWS and we will continuously update it.
Kailona (“kailo-” Proto-Indo-European for “whole, uninjured, of good omen”) provides a global open-source platform for developers that allows individuals to make healthier choices and the research and developer community to accelerate health innovation.
We are an international team of designers, sociologists, anthropologists, and engineers passionate about the dignity, self-determination, trust and healing of people all over the globe.
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 (BMBF) Förderkennzeichen 01|S20S38, MEDKEN, ACANIO and TOCA.