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Using PHRs in the NHS                   Dr. Mohammad
                                        Al-Ubaydli
 Research evidence and best practices
A little about me...

                       Trained as a doctor and PRHO GP

            Trained as a programmer and worked at NIH

             Honorary Senior Research Associate, CHIME

I was obsessed with handhelds...
A little about me...

                       Trained as a doctor and PRHO GP

            Trained as a programmer and worked at NIH

             Honorary Senior Research Associate, CHIME

I was obsessed with handhelds...
A little about me...

                       Trained as a doctor and PRHO GP

            Trained as a programmer and worked at NIH

             Honorary Senior Research Associate, CHIME

I was obsessed with handhelds...
A little about me...


                       Trained as a doctor and PRHO GP

            Trained as a programmer and worked at NIH

             Honorary Senior Research Associate, CHIME

I was obsessed with handhelds... I’m serious!
A little about me...

                       Trained as a doctor and PRHO GP

            Trained as a programmer and worked at NIH

             Honorary Senior Research Associate, CHIME

            ...and now it’s Personal Health Records
Some definitions
 Clinicians                                                                         Patient

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

                                    Patient portals   Personal health records
   Electronic patient records                                                   Personal records


Data by clinicians for clinicians
Some definitions
 Clinicians                                                                                                Patient

                                       Patient portals                Personal health records
Electronic patient records                                                                      Personal records




                              Easing the patient’s burden
                             •scheduling appointments
                             •ordering medication refills
                             •secure messaging
                             •educational resources
                             •access to EPR
                             See: Pyper et al. 2004, Ralston et al,
                             2007.
Some definitions
 Clinicians                                                                                                            Patient

                             Patient portals               Personal health records
Electronic patient records                                                                           Personal records

                                                                                                  Data by patient for patient
                                                                                                   Powerful but unstructured




                                          NHSmail users have mailbox shrunk
                                          06 Feb 2008

                                          NHS staff who use the health service’s email service NHSmail have been
                                          informed that after a recent move to Microsoft Exchange their mailbox size
                                          has been capped.

                                                    NHS accounts have been capped at just
                                          Some 80% of
                                          200Mb, which appears miserly compared with the hefty 6Gb offered
                                          by Gmail for free, or the 5Gb offered for free on Windows Live
                                          Hotmail.
Some definitions
 Clinicians                                                                                     Patient

                             Patient portals   Personal health records
Electronic patient records                                                        Personal records

                                                 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, 2004
Some definitions
 Clinicians                                                                         Patient

                             Patient portals   Personal health records
Electronic patient records                                               Personal records




                                                 What happens
                                               when patient uses
                                               these tools to take
                                                 control of their
                                                  health care?
Answer will be important for fixing current model
                                                   GP




               NHS specialist                                                   A&E



                                            Non-NHS clinicians




 Clinicians                                                                                      Patient

                                Patient portals       Personal health records
Electronic patient records                                                            Personal records
What if patient really was at the centre?




 Clinicians                                                                         Patient

                             Patient portals   Personal health records
Electronic patient records                                               Personal records
We don’t know but...
• Sharing information with patients is   • Patient-held managment plans
  good (Ros 2003)                          improve compliance and care
                                           (Giglio 1978, Mellins 2000)
• Patients with chronic diseases
  particularly benefit (de Clerq 2001)    • Co-authorship between clinician and
                                           patient creates accuracy and
                                           concordance (Kaplan 2001)
• Interaction better than access
  (Winkelman 2005)
                                         • Giving patient decision-support
                                           systems may bring major benefits
                                           (Barry 1999, Brennan 1998, Leydon
                                           2000)
Acknowledgements
• UnLtd, for their grant to support our
  PHR research at Patients Know Best


• Dr. Nick Gaunt, for his excellent
  research and kind help on PHRs


• My co-authors of “Streamlining
  Hospital-Patient Communication:
  Developing High Impact Patient
  Portals”: Jacob Elo and Neha
  Mahendru with artwork by Docxn
  Hayes
Using PHRs in the NHS       Questions?
                            me@mo.md
wiki.patientsknowbest.com

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Using PHRs In The NHS - Research Evidence And Best Practices

  • 1. Using PHRs in the NHS Dr. Mohammad Al-Ubaydli Research evidence and best practices
  • 2. A little about me... Trained as a doctor and PRHO GP Trained as a programmer and worked at NIH Honorary Senior Research Associate, CHIME I was obsessed with handhelds...
  • 3. A little about me... Trained as a doctor and PRHO GP Trained as a programmer and worked at NIH Honorary Senior Research Associate, CHIME I was obsessed with handhelds...
  • 4. A little about me... Trained as a doctor and PRHO GP Trained as a programmer and worked at NIH Honorary Senior Research Associate, CHIME I was obsessed with handhelds...
  • 5. A little about me... Trained as a doctor and PRHO GP Trained as a programmer and worked at NIH Honorary Senior Research Associate, CHIME I was obsessed with handhelds... I’m serious!
  • 6. A little about me... Trained as a doctor and PRHO GP Trained as a programmer and worked at NIH Honorary Senior Research Associate, CHIME ...and now it’s Personal Health Records
  • 7. Some definitions Clinicians Patient Patient portals Personal health records Electronic patient records Personal records
  • 8. Some definitions Clinicians Patient Patient portals Personal health records Electronic patient records Personal records Data by clinicians for clinicians
  • 9. Some definitions Clinicians Patient Patient portals Personal health records Electronic patient records Personal records Easing the patient’s burden •scheduling appointments •ordering medication refills •secure messaging •educational resources •access to EPR See: Pyper et al. 2004, Ralston et al, 2007.
  • 10. Some definitions Clinicians Patient Patient portals Personal health records Electronic patient records Personal records Data by patient for patient Powerful but unstructured NHSmail users have mailbox shrunk 06 Feb 2008 NHS staff who use the health service’s email service NHSmail have been informed that after a recent move to Microsoft Exchange their mailbox size has been capped. NHS accounts have been capped at just Some 80% of 200Mb, which appears miserly compared with the hefty 6Gb offered by Gmail for free, or the 5Gb offered for free on Windows Live Hotmail.
  • 11. Some definitions Clinicians Patient Patient portals Personal health records Electronic patient records Personal records 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, 2004
  • 12. Some definitions Clinicians Patient Patient portals Personal health records Electronic patient records Personal records What happens when patient uses these tools to take control of their health care?
  • 13. Answer will be important for fixing current model GP NHS specialist A&E Non-NHS clinicians Clinicians Patient Patient portals Personal health records Electronic patient records Personal records
  • 14. What if patient really was at the centre? Clinicians Patient Patient portals Personal health records Electronic patient records Personal records
  • 15. We don’t know but... • Sharing information with patients is • Patient-held managment plans good (Ros 2003) improve compliance and care (Giglio 1978, Mellins 2000) • Patients with chronic diseases particularly benefit (de Clerq 2001) • Co-authorship between clinician and patient creates accuracy and concordance (Kaplan 2001) • Interaction better than access (Winkelman 2005) • Giving patient decision-support systems may bring major benefits (Barry 1999, Brennan 1998, Leydon 2000)
  • 16. Acknowledgements • UnLtd, for their grant to support our PHR research at Patients Know Best • Dr. Nick Gaunt, for his excellent research and kind help on PHRs • My co-authors of “Streamlining Hospital-Patient Communication: Developing High Impact Patient Portals”: Jacob Elo and Neha Mahendru with artwork by Docxn Hayes
  • 17. Using PHRs in the NHS Questions? me@mo.md wiki.patientsknowbest.com