To test PHT in practice. A technical infrastructure is developed in which health care institutions make their data findable, accessible, interoperable and reusable (FAIR). This data will be used in several test cases to learn from, make predictions to empower patients and to improve health care. Furthermore, the project aims to dig deeper into the ethical and legal issues of PHT. To find answers on questions like: how many times should you ask patients permission to use their data when researchers conduct several projects with the same data?
Speeding up the introduction of PHT is necessary to make the healthcare sector more efficient, which will benefit doctors and patients alike.
Summary of the project
The partners are currently working on two topics: predicting side effects of prostate cancer treatments and supporting ambulance staff in deciding whether a patient with cardiovascular symptoms needs to be brought to the hospital. Currently ambulance staff do a few measurements and then make a decision. The project partners are looking for variables that predict whether hospitalisation is needed to help ambulance staff improve their decision.
It turns out to be difficult to get commitment of all partners in a region to cooperate on sharing data and on building a PHT infrastructure. Partners want to be 300 % sure that PHT is what the government wants in the long run, otherwise some of them prefer not to invest time and money in PHT.
Panel discussions revealed that citizens are willing to share their medical data with researchers for the benefit of other patients. However, they don’t want to share their medical data with their employers and their insurance company. Citizens also want to learn new things from data from others and would like to be able to ask their own questions. The Personal Health Train approach could make this possible.
Health care institutions on the other hand say they are too busy with implementing new laws that give patients the right to check their own medical data. They often say: we’ll invest in making data available for research in the future. It’s difficult to convince Health care institutes that it is more efficient to start with building an infrastructure beneficial to both patients and research instead of adapting the new infrastructure at a later stage to improve access for researchers in resecting patients privacy.
Making an e-Health app for cardiovascular diseases that gives patients advice based on their own health data. This project starts in the beginning of 2020 and will start with making the data FAIR and checking which are the most important variables that must be used in the app.
Another follow up project is making profiles of vulnerable elderly by combining available data to improve care and to let them live in their own home as long as possible. This project is submitted to ZonMw and intends to make prediction models using PHT to combine data of clever mattresses, GPS data, information about the use of the alarm button, life style monitoring and things like that with data of home care organizations.
Esther Bloemen-van Gurp
|Funders||Zorginstituut Nederland, the province of Limburg, several companies and several knowledge institutes|
Antonie van Leeuwenhoek (AvL), Zuyd Hogeschool, IKNL, Patiënt Plus, Maastro Clinic, Radboud Medical Centre Nijmegen, Maastricht UMC, Netwerk Acute Zorg Limburg, Maastricht University