You are on page 1of 14

Big Data

A patient perspective

David Barker
Chief Executive

@davidbarkerceo 1
THE IMPORTANCE OF SHARING DATA
Having the right information enables better treatment and care
Good data can help to plan services better and help drive quality
improvement programmes
Good data can give evidence for savings and investment

Good data can drive and improve local/national/international


research into the conditions
THE JOURNEY
Patient safety TO CO-PRODUCTION IN HEALTH CARE
- pharmacovigilance

Imagine a patient never having to repeat their life story and full
disease history each time they visit the clinic!

crohnsandcolitis.org.uk
Ask the audience
As a patient are you aware of the data held on your medical
record by your clinical team?

Yes they have shared it with me

I know they have data about me


but I am not aware of the detail

I have asked for the data but it


has not been shared with me

crohnsandcolitis.org.uk
Are you aware of the data held on your medical
record by your clinical team?

Yes they have shared it with me 17%

I know they have data about me


but I am not aware of the detail
81%

I have asked for the data but it


has not been shared with me
2%

crohnsandcolitis.org.uk 237 responses


Have you seen the quality of your local clinical service
and the care you receive improve over the last 2 years?

Yes some
real improvements 12%

The service has stayed 72%


about the same

The service has


got worse 16%

crohnsandcolitis.org.uk 237 responses


How many times have you had to repeat your medical
history to a doctor or nurse in clinic?

17%

40%

24%

43%

19%

crohnsandcolitis.org.uk 237 responses 6


Have you ever left a clinic appointment unclear
about the diagnosis or treatment plan?

52%

48%

crohnsandcolitis.org.uk 237 responses


A patient perspective Carrie Grant

crohnsandcolitis.org.uk 8
Why we support the UK IBD Registry

Research
potential

National & Real time


Local benefit information

Inform
commissioning IBD Dashboards
and service
design Registry

Monitor
biologics Help to drive
QI
treatment

Improve
understanding
of long term
outcomes

crohnsandcolitis.org.uk 9
Are you aware of the UK IBD Registry?

16%

84%

crohnsandcolitis.org.uk 237 responses


OUR GOAL FOR ALL PATIENTS
I can see my data and play an active role
I am aware that data is used
for my care, for developing NHS
services and research I understand how data is
used to improve my care,
NHS services and to do
research
I understand and can
exercise my options on
how my healthcare data is I experience the benefits
used THE JOURNEY TO CO-PRODUCTION IN HEALTH CARE
of data for my care and see
how it improves services and
research
I understand and
support the drive for a
UK IBD Registry I work in partnership with my clinical team to help
enable and deliver the use of big data

crohnsandcolitis.org.uk
crohnsandcolitis.org.uk 12
crohnsandcolitis.org.uk 13
crohnsandcolitis.org.uk 14