1 PATIENT-CONTROLLED RECORDS FOR Patient-Powered Research Networks Mohammad Al-Ubaydli and Emily Zhao

2 PKB’S ROLE WITHIN PPRN 2

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4 PKB’s role within IBD PPRH 1.HIPAA-compliant secure storage of EHR data (done) 2.C-CDA import / export support (finishing off) 3.Blue button / Direct Message support (building now) 4.Templates for local provider to enter data for patient (Emily will work to create with UNC / CCFA)

5 FURTHER COLLABORATION (A SUGGESTION, IN CASE THERE IS INTEREST) 5

6 PKB would like to integrate with others in the project so that study participants get a better experience and so that non-study participants can use these same tools

7 Integration with Validic would allow patient to show these data points to their local provider, delivering benefits in online consultations Non-US PKB users with IBD would also find this integration useful

8 Integration with Crohnology would allow patients to socialise their EHR data for peer support, and bring their PROs into their consultations with their provider. Non-US PKB users with IBD would also find this integration useful

9 Integration with CCFA smartphone app would make data easily available to providers so patients are more likely to use the app and providers benefit from data Non-US PKB users with IBD would also find this integration useful

10 ABOUT PATIENTS KNOW BEST 10

11 Pharmacy Pharmacies Secondary care/Hospital Specialist services Community teams Employers Relatives GP Charities & Patient Advocacy Groups Government & Commissioning bodies Researchers Social services Mobile device and app developers Patient The problem Primary care services

12 Hospital services GP Without PKB The solution? Patient portals The patient doesn’t own the data Often read-only Multiple sites, multiple logins They cannot be shared with others They are not portable So integrated care is not possible

13 Pharmaceuticals Pharmacies Secondary care/hospitals Primary care health services Employers Relatives GP Charities & Patient Advocacy Groups Government & Commissioning bodies Researchers Mobile device and app developers Without PKB The solution Community teams Specialist services Social services

14 WHAT CAN BE ACHIEVED WITH PATIENT-CONTROLLED RECORDS 14

15 MONITORING / Symptoms and laboratory results for clinicians, carers and patient Rolling out across UK IBD units 15

16 SELF ASSESSMENT / Patient switches treatment at home 16

17 CUSTOMERS “thing that I really like about this is that the focus is the right way round and the focus is very much on the patient, and it’s the patient who controls their notes, and who allows people to have access to them” Dr Simon Gabe, on BBC Radio 4Dr Simon Gabe, on BBC Radio 4 “When I was younger you really had to get into contact with doctors because you would constantly be on the phone and then they wouldn’t be able to get back to you and then you’d have to try and send an to someone and they necessarily wouldn’t get that e- mail. It was just really hard to keep in touch” Great Ormond Street Hospital patient on BBC Radio 4Great Ormond Street Hospital patient on BBC Radio 4 Patients Know Best is probably unique. I had been trying to find a solution like it for over a year and nothing had really met what I had in mind for patients’ needs” Gary Hotine, IT Director, South Devon HealthcareGary Hotine, IT Director, South Devon Healthcare

18 Invite who you trust to see and contribute to your record Create a health network to coordinate your care Delegate responsibility to a carer

19 Invite who you trust to see and contribute to your record Create a health network to coordinate your care Delegate responsibility to a carer

20 Lab results direct to the patient Monitor symptoms, take measurements and share

21 Pharmaceutical companies integrating their devices into PKB for compliance monitoring with roll-out across US-EU

22 Care plans to empower home management of healthcare Assessments and surveys completed remotely

23 I really like this service... Maybe its the novelty, but having a way of interacting with clinicians that mirrors how people use online facilities is brilliant “ ”

24 COMPARISON WITH OTHER PHRs 24

25 PATIENT CONTROL – ENSURING QUALITY 25

26 PATIENT CONTROL – ENSURING QUALITY Two principles allow integrated care across a health network: 1.The patient owns the data, so they decide who gets access 2.PKB will integrate with any other system so that the data flows to wherever the patient chooses 26

27 PATIENT CONTROL – HOW PPRN PARTNERS DO THIS PHR: complete private medical record, shared with providers and carers 27 Community: sharing PROs for peer support and research mHealth: mass automated data anonymized and aggregated

28 INTEGRATION 28

29 INTEGRATION – EASY AND OPEN Integrating with outside IT systems through REST API / Oauth Smartphone apps for high compliance 2.Devices e.g. monitoring and injections 3.Web sites e.g. Patients Like Me, Know Your Own Health 29 Two weeks to integrate with internal hospital IT systems 1.HL7 SSL from IT team 2.We take care of mapping, security, notification 3.Data available to all other providers

30 WHERE IS PATIENTS KNOW BEST 30

31 Working with patients, across all care settings, across the world 31 Over 30 sites across the UK Hospitals CCGs Local Authorities Charities Specialist centres Device manufacturers Pharmaceuticals Software providers Spreading globally 2013: Australia, Hong Kong, Holland 2014: Ireland, Belgium +10 EU coming

32 FURTHER COLLABORATION (A SUGGESTION, IN CASE THERE IS INTEREST) 32

33 PKB would like to integrate with others in the project so that study participants get a better experience and so that non-study participants can use these same tools

34 Integration with Validic would allow patient to show these data points to their local provider, delivering benefits in online consultations Non-US PKB users with IBD would also find this integration useful

35 Integration with Crohnology would allow patients to socialise their EHR data for peer support, and bring their PROs into their consultations with their provider. Non-US PKB users with IBD would also find this integration useful

36 Integration with CCFA smartphone app would make data easily available to providers so patients are more likely to use the app and providers benefit from data Non-US PKB users with IBD would also find this integration useful

37 THANK YOU! Questions?