mybreastcancer Showcase Give me my damn BIG data

Transcription

1 mybreastcancer Showcase Give me my damn BIG data Big Data innovatie in de Zorg Dinsdag 3 juni 2014 Slide 1

2 Epatient Dave 3 years on Give me my damn data e-patient Dave blog. September 17, 2012 at 4:27 pm. Doctor's view: Patient s will know too much about their health/disease that they are not equipped to deal with Epatient- Dave: It astounds me how many people in the medical arts form opinions without evidence. It reminds me of the old expert based medicine as opposed to the more modern evidence-based medicine. Slide 2

3 EpatientDave about Open Notes project I can t emphasize enough the importance of the study s design: Evidence of patient engagement has constantly been met with My patients are different, My patients are poorer, You guys are all urban geeks, Your n is too small, etc. So this study is large (over a hundred docs and nearly 20,000 patients), and in three very different settings Slide 3

4 Study Result 99% of patients wanted open notes to continue and no doctor elected to stop. Dr. Daniel Sands How can patients participate if they can t see what I see?? Slide 4

5 EpatientDave about Open Notes project Extended to patients! Slide 5

6 Why can't we do this in the Netherlands? Slide 6

7 We can... And do a bit better! Slide 7

8 Shared mycees Decision Making Smart Device Data Data mylto mycees Data XML Biomaterial Shared Case Decision Making Patent XML XML XML Care professionals XML Lab Clinical Doc Imaging Genomics Breastcancer mycees test patient Data Interoperability XML Publications Slide 8

9 Web of trusted data service Services: MedInt > ScreeningResult > GP Result > Poli-Diagnosis > MDO-Treatment > Home Care MyCees 1 Standard Data Slide 9

10 The BV NL challenge Do you ignore this development and hope it will go away and do business as usual? or Will you be the entrepreneur to recognize this development, be proactive and adapt your organization to this development? Slide 10

11 What happens if you ignore this? Patients will come with their 'mycees' Data to your care organization. Ask your care providers to think with them Ask for a digital copy of the note of the interaction they had with them And find out that... Slide 11

12 Surf-interNET innovation highway Connects Research centers and hospitals as consumers Datacenters with software/application services as providers Keeps data under control of the end-users Seperate network for innovation Hospital firewall and their backbone is seperate Hospital LAN needs to be connected similar to internet DMZ or other service to push data from internal network to innovation highway Seperate tracks for 'heavy good' data flows and 'fast lane' tracks with guaranteed bandwidth and/or latency. Slide 12

13 mybreastcancer Show Case User access with Shared Portal Service using (PKI) certificates (DigitalIDs) if possible Web-browser Screening Clinic Stream & Research Genetc vncbrowser Netwwork (LAN) Pipelines URL Data Service Web-service Interoperability mycees Link Virtual CTMM/TraIT... DICOM Genetc CTP XNAT Pseudo T/CDR VNdrA Data Service VM Applicatons Arvados Data Asset Management Storage & Compute IT-Infra Backbone 10 GB NYGC Local Capacity Disk NFU STZ mylto Indepent Deep Archive Storage Slide 13

14 User experience driven mycees Source: Flo Interactive Slide 14

15 MyCees Magic Button mycees Slide 15

16 MyCees Magic Button mycees Patient Slide 16

17 MyCees Magic Button mycees Care provider Slide 17

18 MyCees Magic Button mycees Researcher Slide 18

19 Patient View MYCEES mycees myinstructions... mylto myconsent mybiomaterial mylto Powered by Slide 19

20 Patient View mijncees Powered by Powered: by iqare & Carelliance Slide 20

21 mylto mydata Cloud Vault Users Patient+Community <> All data per patient Researcher Principal Investigator <> All data per Research Project & Collection Care provider expert network <> All data per expert network Collection Slide 21

22 MyBreastcancer Show Case message Shared decison making Patient central Dynamic Custom made (personalized) (Big) data independence Slide 22