1. How patient power and patient needs change the dynamic of healthcare

2. Trained as physician at the University of Cambridge. Trained as programmer and worked as NIH Staff Scientist. Honourary Senior Research Associate, UCL Medical School. Continuing research on PHRs from 2,700 US hospitals, new book in 2010: book.patientsknowbest.combook.patientsknowbest.com Designed by a patient…

3. 1. Basics: definitions, and why do this at all? 2. Integrated care: possible through patient control 3. Screenshots: how does the software work Agenda

4. Some definitions Patient portals Clinicians Electronic patient records Personal health records Personal records Patient

5. Some definitions Patient portals Clinicians Electronic patient records Personal health records Personal records Patient Data by clinicians for clinicians

6. Some definitions Patient portals Clinicians Electronic patient records Personal health records Personal records Patient Patient is only practical and legal link across all providers

7. Some definitions Patient portals Clinicians Electronic patient records Personal health records Personal records Patient Markle Foundation’s ideal PHR: Access controlled by patient Lifelong records Information from all Universal access Private and secure Transparent Easy exchange See: Connecting for Health, 2004Connecting for Health, 2004

8. 1. Basics: definitions, and why do this at all? 2. Integrated care: possible through patient control 3. Screenshots: how does the software work Agenda

9. Integrated care Patient control allows the institution (you) to integrate with everyone Local Clinical Team and Other Institution Clinical Teams NHS and non-NHS UK and non-UK Health and non-health Global platform for local innovations

10. Specialist nurse or carer can invite on behalf of patient Invite local GPs instantly

11. Share data with any other hospital Great Ormond Street Hospital transferring data to St Mark’s Hospital for smoother handovers

12. Work with innovative providers

13. Work with charities Scanning and uploading all past x-rays

14. Any smartphone developer can integrate their app with PKB US developer built iPhone asthma app NHS London built Android asthma app Oxford developer building SALT app Researchers building data collection apps Easy to build something local or use solutions built by others

15. Patient-reported outcomes / observations / information Patient-controlled records as a research tool Royal Free running COPD research trial funded by Novartis Torbay Hospital running breast cancer research trial Crohn’s disease trial (USA)

16. 1. Basics: definitions, and why do this at all? 2. Integrated care: possible through patient control 3. Screenshots: how does the software work Agenda

24. Conduct online consultations which are seen by all clinicians in team

25. RCPath explanations for patient save clinician’s time

27. Symptoms can be entered from web site or smartphone for clinic review

28. Diary allows patient or parent to keep track of appointments and developments

29. Treatment plans for asthma educate families / teachers and reduce A&E visits Most chronic conditions have an action plan to help engages working partnerships in care

30. A clinicians view of the patients site

31. Thank you for listening Catherine Clapton Patients Know Best team@patientsknowbest.com www.patientsknowbest.com