1 / 37

PATIENT-CONTROLLED RECORDS FOR Patient -Powered Research Networks

PATIENT-CONTROLLED RECORDS FOR Patient -Powered Research Networks. Mohammad Al- Ubaydli and Emily Zhao. PKB’S ROLE WITHIN PPRN. PKB’s role within IBD PPRH HIPAA-compliant secure storage of EHR data (done) C-CDA import / export support (finishing off)

ignatius-bates
Download Presentation

PATIENT-CONTROLLED RECORDS FOR Patient -Powered Research Networks

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. PATIENT-CONTROLLED RECORDS FORPatient-Powered Research Networks Mohammad Al-Ubaydli and Emily Zhao

  2. PKB’S ROLE WITHIN PPRN

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

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

  5. 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

  6. 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 alsofind this integration useful

  7. 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 alsofind this integration useful

  8. 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 alsofind this integration useful

  9. ABOUT PATIENTS KNOW BEST

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

  11. The solution? Patient portals • Without PKB • 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 GP Hospital services

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

  13. WHAT CAN BE ACHIEVED WITH PATIENT-CONTROLLED RECORDS

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

  15. SELF ASSESSMENT / Patient switches treatment at home

  16. “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 e-mail 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 4 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 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 Healthcare

  17. Invite who you trust to see and contribute to your recordCreate a health network to coordinate your careDelegate responsibility to a carer

  18. Invite who you trust to see and contribute to your recordCreate a health network to coordinate your careDelegate responsibility to a carer

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

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

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

  22. “ 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 ”

  23. COMPARISON WITH OTHER PHRs

  24. PATIENT CONTROL – ENSURING QUALITY

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

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

  27. INTEGRATION

  28. INTEGRATION – EASY AND OPEN Two weeks to integrate with internal hospital IT systems HL7 SSL from IT team We take care of mapping, security, notification Data available to all other providers Integrating with outside IT systems through REST API / Oauth 2.0 Smartphone apps for high compliance Devices e.g. monitoring and injections Web sites e.g. Patients Like Me, Know Your Own Health

  29. WHERE IS PATIENTS KNOW BEST

  30. Working with patients, across all care settings, across the world • 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

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

  32. 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

  33. 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 alsofind this integration useful

  34. 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 alsofind this integration useful

  35. 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 alsofind this integration useful

  36. THANK YOU! Questions? success@patientsknowbest.com

More Related