Does the project also provide any kind of data analysis?
The PHT is primarily a FAIR data infrastructure approach so that a research question (incl. a specific type of data analysis) can be posed to the data without the need for data to leave the station (hospital, PHR, cohort, etc.). As analyses vary a lot between studies, it is up to the user to specify and implement the analysis. Nonetheless there are open source analyses available to perform certain tasks (e.g. learn a support vector machine classifier in a PHT manner) and we expect that community to grow.
Is data validated or verified somehow or is trust left to the bona fide of the participants? On the website it says “Only certified research trains and certified FAIR data stations are allowed on the track and their use is fully controlled and auditable”, who is in charge of the auditing?
Data quality (incl. validation and verification) is very important to prevent garbage-in, garbage-out studies. However what constitutes good and bad quality data is very user dependent and it is impossible to police that. We therefore focus on data provenance and data quality descriptors. Having properly described (FAIR) data and knowing its provenance solves a lot of data quality issues. E.g. a prospective cohort, with a data collection protocol and very little missing data from a reputable source vs. the routine care data from a hospital. Both can be used in the PHT but some studies might need the high quality data of the prospective cohort while others may be more interested in routine data.
When you mention it already works in 8 hospitals, is it fully implemented?
In the CAT network (global cancer hospital based), the PHT principles were used to learn predictive models for lung cancer. This is published work (e.g.https://dx.doi.org/10.1016/j.radonc.2016.10.002).
Do you have a timeline/full implementation timeline (when the project is considered to have enough information to make the impact it wants to achieve)?
After the contractual phase, it takes about 3 months for a hospital to join the network and give access to say 20 data elements for a specific patient population. Once joined, providing additional elements and patients typically takes hours to days.
You mention that the business model works with parties sharing their data having free access and those who want to access but don’t share will have to pay – do you have more info about the business model? Who pays for the infrastructure and set up?
In the CAT project (global cancer, hospital based) we are coalescing around two rules of engagement
- All publications resulting from research which uses the providers’ data, include at least one co-author from the data provider (academic reward)
- All revenue (e.g. royalties) resulting from research which uses the providers’ data, is split between the researcher (50%) and the data providers (50% pro rata of the number of data subjects included in the research)
Besides this approach, one can think of other business models as long as they focus on rewarding data providers for making their data FAIR and share them. The current focus is on reducing cost, effort and throughput time for a center to join the PHT. Amongst others, this means providing high quality, open source “FAIRifying” tools.
In the introductory video, it says the project is open for research, education, patients, providers, …..do you think we could find a place for pharma industry with broad VBHC purposes (research, hc delivery, outcomes based contracts, etc)?
Yes, definitely. Industry (pharma, devices, insurance) is one of the health care segments that we hope will use the PHT. Note that data access policy (the A of FAIR) may limit some use cases. E.g. in the Netherlands one can only use data for research and not for other purposes (unless consent is given).