How patient power and patient needs change the dynamic of healthcare

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…

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

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

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

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

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

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

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

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

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

Work with innovative providers

Work with charities Scanning and uploading all past x-rays

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

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)

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

Conduct online consultations which are seen by all clinicians in team

RCPath explanations for patient save clinician’s time

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

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

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

A clinicians view of the patients site

Thank you for listening Catherine Clapton Patients Know Best