This document discusses the role of patients in improving healthcare quality. It notes that traditionally, quality improvement efforts have focused on monitoring outcomes and provider ratings. However, social media platforms and online communities now allow patients to directly share their experiences and assess quality of care. Studies show patients who connect with others online report better management of conditions like epilepsy and more control over their care. When patients can openly discuss their conditions, strategize treatments, and evaluate different providers, it empowers them to take a more active role in improving overall healthcare quality.

1. The role of the patient in improving quality
Paul Wicks, PhD.

5. Engines
Aerodynamicist
Performance
Strategists
Testing
Tyres
Management
Systems
Dynamicist

8. So how have you
been in the last 6
months?

9. Lewis Trevor
Electronic Sensors Multiple, continuous,
sophisticated
Intermittent,
cumbersome, outdated
Iteration Continuous Glacial
Systems modeling Experts Absent
Purpose of the system Make an advertising
billboard move around
Live a meaningful life
Rewards for a
measured incremental
improvement
Keep your job Money, glory
Rewards for winning Money, glory Keep your job
Two Approaches to Quality Improvement

14. PROMs / Outcomes
Social
Networking
&
conversations
Provider Ratings
Case
Management
PatientsLikeMe
PatientsKnowBest
HealthUnlocked
GP Ratings App
I Want Great Care
Patient Opinion
HealthTalk
Online
CPRD / GPRD
Database

15. “Where Can I Get The Best Care?”

16. “How Do I Find a Patient Like Me?”

17. What does good care look like?
Wicks & Fountain (2012) Patient assessment of physician performance of epilepsy quality of
care measures. Neurology Clinical Practice 2:335

18. 23% - I have had
fewer visits to
the ER
28% -
PatientsLikeMe gave
me more and
better control
over my condition
59% -the site has
given me a better
understanding of
my seizures
49% - recording
my seizures helps
me manage my
condition
50% -
PatientsLikeMe
helped me
understand side
effects
2010 Epilepsy User Survey: Those who connect with others on
PatientsLikeMe report a wider range of perceived benefits to their
epilepsy management and quality of life
30% -
PatientsLikeMe
helped me be more
adherent
One-third of respondents had no one in “the real world” with whom
to discuss their epilepsy. After joining PatientsLikeMe, two-thirds
reported a connection to at least one other person with epilepsy.

19. 2010 Epilepsy User Survey: Those who connect with others on
PatientsLikeMe report a wider range of perceived benefits to their
epilepsy management and quality of life

20. Genetics
EEG Telemetry
Cognition
Quality of Care
Treatments
Safety
Carer Support
Co-morbidities
Strategy
Systems
Dynamicist

21. “Technology makes things possible,
people make things happen”

22. The role of the patient in improving quality
Paul Wicks, PhD.