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Patient-controlled     records                     1
Patients are assets, not liabilities                                       2 2
Patients are assets, not liabilities                                       3 3
Patients are assets, not liabilities                                       4 4
Patients are assets, not liabilities                                       5 5
Patients are assets, not liabilities                                       Dr Jirjis was not unusual in making            ...
ABOUT US           7 7
MEET OUR TEAM / Who we are?Dr Al-Ubaydli          Dr Smith                   Cath Clapton              Rob WhelanAuthor of...
ABOUT US / Our products                          Patient-controlled records                          Two principles allow ...
PATIENT CONTROL                  1010
Without patient                                                                            Researchers                    ...
With patient Without PKB                                  Employers      Government &      Researchers                    ...
DEFINITIONS              1313
DEFINITIONS / Electronic health records Data by clinicians, for cliniciansDesigned to increase the productivity of clinici...
DEFINITIONS / Patient portals                                Easing the patient’s burden                                Hi...
INSTITUTION CONTROL / does not work                             Everyone creating a patient portal                        ...
PATIENT CONTROL / the only answer                              Definition of patient control                              ...
INNOVATION PLATFORM                      1818
INTEGRATED CARE / Start small and fastPatient control allowed GOSH to integrate with everyone     GOSH and non-GOSH  Local...
INTEGRATED CARE / Thepower of control without theburden                           2020
SHARE DATA / Across geographical boundaries                                              2121
COMMISSIONERS / Work with innovative providers Dementia UK’s WANDA case management systemDementia UK integrating with PKB ...
WORK WITH CHARITIES / New care models Charties delivering care and research across EU and USAAlkaptonuria providing resear...
24
Schematic of Data flow – Patient Advocacy a key stakeholder                                                              25
THANK YOU! Questions?              26
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Patients Know Best, Fjord Kitchen presentation

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Patients Know Best, Fjord Kitchen presentation

  1. 1. Patient-controlled records 1
  2. 2. Patients are assets, not liabilities 2 2
  3. 3. Patients are assets, not liabilities 3 3
  4. 4. Patients are assets, not liabilities 4 4
  5. 5. Patients are assets, not liabilities 5 5
  6. 6. Patients are assets, not liabilities Dr Jirjis was not unusual in making a mistake, but in recognizing it and asking patients to help The lesson 6 6
  7. 7. ABOUT US 7 7
  8. 8. MEET OUR TEAM / Who we are?Dr Al-Ubaydli Dr Smith Cath Clapton Rob WhelanAuthor of two books Former editor of the Specialist nurse CTO at PKB. Formerabout patient record British Medical Journal; experienced in training developer at US e-access; physician, Chair and member of and change management prescribing. Works withprogrammer, CEO. international ethics and for clinicians giving 3rd-party developers for scientific committees patients record access app integration 8 8
  9. 9. ABOUT US / Our products Patient-controlled records Two principles allow integrated care across CCGs: 1. The patient owns the data, so they decide who it goes to 2. PKB will integrate with any other system so that the data flows to wherever the patient chooses 9 9
  10. 10. PATIENT CONTROL 1010
  11. 11. Without patient Researchers Insurance Employers Government & Commissioning bodies Social & Community Care Charities & Patient Relatives Advocacy Groups Patient Doctors Private Healthcare Pharmacies Public Healthcare Nurses Pharmaceuticals Mobile device and app developers 11
  12. 12. With patient Without PKB Employers Government & Researchers Commissioning bodies Insurance Social & Community Care Charities & Patient Advocacy Groups Relatives Doctors Pharmacies Mobile device and Public Healthcare Nurses Private Healthcare Pharmaceuticals app developers 12
  13. 13. DEFINITIONS 1313
  14. 14. DEFINITIONS / Electronic health records Data by clinicians, for cliniciansDesigned to increase the productivity of clinicians in a buildingBut does not work with clinicians in other buildings (so care is not integrated)Nor does it work with the patient (misses the most important stakeholder) 1414
  15. 15. DEFINITIONS / Patient portals Easing the patient’s burden Highly useful: scheduling appointments, ordering medication refills, secure messaging, access to the EHR But low usage: little integrated care means low patient engagement so low return on high investment 1515
  16. 16. INSTITUTION CONTROL / does not work Everyone creating a patient portal is trying to do the right thing • Institution-specific e.g. hospital web site or NHS mandate for GP record access • Disease-specific e.g. cancer portal Yet approach is wrong because it does not focus on the patient 1616
  17. 17. PATIENT CONTROL / the only answer Definition of patient control The patient can revoke the access to the record of the original institution that gave the patient the record, without affecting the patient’s ability to use the record with others All else is institution control (Do not be fooled by “shared control”, the right to exclude others can only be held by one party) 1717
  18. 18. INNOVATION PLATFORM 1818
  19. 19. INTEGRATED CARE / Start small and fastPatient control allowed GOSH to integrate with everyone GOSH and non-GOSH Local NHS providers for each patient invited and able to accept as already built into the NHS N3 network NHS and non-NHS Social workers, teachers, charities, and private home health care providers all able to access and contribute to the record UK and non-UK Care across countries, and integration with vendors from all over the world provide the patient with the best combination of apps 1919
  20. 20. INTEGRATED CARE / Thepower of control without theburden 2020
  21. 21. SHARE DATA / Across geographical boundaries 2121
  22. 22. COMMISSIONERS / Work with innovative providers Dementia UK’s WANDA case management systemDementia UK integrating with PKB to share care plans with patient and carers, and integrate with rest of health care system 2222
  23. 23. WORK WITH CHARITIES / New care models Charties delivering care and research across EU and USAAlkaptonuria providing research across EUBarth Syndrome UK building international registry with US researchersThalidomide Trust providing x-rays and online consultations across EU 2323
  24. 24. 24
  25. 25. Schematic of Data flow – Patient Advocacy a key stakeholder 25
  26. 26. THANK YOU! Questions? 26

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