Patients also have the option to make their data work harder for the global rare disease community by contributing their medical history to the greater Foundation 29 knowledge base.
All data is aggregated and anonymized to ensure privacy. Patient associations also benefit from Health29’s disease-specific functionalities, developed through all this data.
Take Control of Your Data
Health29 gives patients total control of their medical history, eliminating the need to keep track of countless documents.
Accessibility and Simplicity
Health29 makes it easy for patients to input, capture, and share data with telemetry, conversational interfaces, natural language processing and artificial intelligence. The result is a comprehensive look at patient health that presents a full picture of the situations surrounding their condition.
Ease of Communication
In addition to keeping track of a patient’s medical history, Health29 makes it simple for individuals to share their entire history with the members of their medical team. Patients easily manage their condition and access their data on the web or the smart phone app.
Privacy and Security
Patient personal data should be private and secure as recognized by the different Data Protection Agencies. Health29 is designed to abide by the European and US data protection regulations, establishing a state of the art architecture with strategies to avoid unauthorised access, data loss and other threats.
Patient Organization Benefits
- Have the patients community connected in a common place to provide better support and communication.
- Understand the condition better and generate evidence to improve diagnosis, safety and condition management.
- Collaborate with external entities.
- Translate the platform according to their needs. Currently Health29 supports English, Spanish and Dutch.
The Health29 platform offer a number of features that unlock the power of patient data. As with everything Foundation 29 does, the ultimate goal is improving the quality of life for patients facing rare diseases. Learn more about some of the features that form the backbone of Health29 below.
Helpful follow up with alerts, reminders and assistance with data input.
Q&A and Knowledge Management
Ask questions about the condition to a curated database of information that will be updated as more questions are asked.
Data Set Management
For patient organizations. Include everything you might need to know your population: create data elements, define sections to encapsulate information, define labels, type of fields, associated symptoms, mandatory fields to complete, etc…
Patient Managed Registry
For patient organizations, Health29 can be a patient registry database that also helps to keep connection with them.
Projects Based on Health 29
Fundación Stop Sanfilippo
We work with StopSanFilippo, an organization of patients with Sanfilippo syndrome. The project is oriented to characterize its population and take advantage of the phenotype and genotype data combination.
Duchenne Data Platform
Duchenne Parent Project is one of the biggest rare diseases patient organizations in Europe. We are developing a data platform where patients can store securely heir clinical data (symptoms, medication, clinical history, genetic information) and share this information with the people they trust.