The document discusses the evolving landscape of digital research and data collection in healthcare, emphasizing the integration of new technologies and data sources like wearables and real-world data analytics. It highlights the impact of GDPR regulations on data usage and the importance of patient consent in research processes. Additionally, it points to the shift towards online patient engagement and the need for innovative methodologies to collect and analyze healthcare information.

1. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Digital Research and Data
Digital E-Ethnography and Pa<ent Data
John Storey
AplusA Healthcare Research
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
How market research and insights are finding
innova4ve ways of collec4ng informa4on

2. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
NewMR 2018 Sponsors
Pla<num
Gold
Silver
Communica<on

3. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Market Trackers
Surveys
Qual Insight
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Big data vs Small data
Data factories
IMS IQVIA
Nielsen
IRI data
TNS Kantar
?

4. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Like driving forward whilst looking in the rear view mirror
Real World Data?

5. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
In HEATHCARE MR
Public Health Data
NHS 4mn rows each month
PMR Pa<ent Medical Records
Digital Health Data
Health Apps
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Signals a change in the MR dynamics
Search and analy<cs
(Google)
Social listening
Wearables
Internet connected
(Internet of things)
Real World Data

6. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
70 BRANCHES
TRADITIONAL
EPOS +
1500 online
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection

7. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
EXAMPLE: EPOS data: 2 years to date
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
The interac<on of analgesics, cough & cold, hayfever and pollen count
pollen count monitor
PredicJve AnalyJcs

8. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Pa<ent Trackers: Real world data?
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Oncology (cancer)
Cardiology
Rare diseases
Physician Pa<ent Charts
Pa<ent Reported Outcomes

9. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Prescribing data
GP Prac<ce Prescrip<ons
Pharmacy Dispensing
Services
Medicines Use Review (MUR)
New Medicine Services (NMS)
Flu services
Level
Region and Postal area
Clinic and GP/Nurse/HCP
Community Pharmacy
EXAMPLE: PUBLIC DATA AVAILABLE
Information Services Portal (ISP)
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
NHS 4mn rows each month

10. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Diabetes – The Problem Undiagnosed
§ 3.5 million people have been diagnosed (2016)
§ An es<mated 1.1 million are believed to be undiagnosed
§ By 2025, it is es<mated that five million people will have diabetes in the UK
Diabetes UK, 2016 (diabetes.org.uk)
BIG DATA ANALYSIS EXAMPLE
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Based on NHS data and Rx PMR

11. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection

12. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
58 million
diabetes items
245 million
diabetes risk items have
been prescribed
23% raJo
of Diabetes items
prescribed versus risk items
Ra<o to popula<on vs. prescribed
Where should resources be focused?
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection

13. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
…but where has the patient gone?
EXAMPL
EThe pa<ent has gone online
They live online and offline
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Doctors are also online

14. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Trend towards online paJent support programmes
…but the real prize is the data collected

15. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
advert

16. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
430,000n +
Prescribing
Apps for beXer
paJent
outcomes,
…but also
collecJng data
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection

17. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Patient Journey,
walking in the footprints of the
patient
Treatment Pathway
walking with the Physician
chat through an
App and ask
ques<ons
Watch their
behaviours online
whilst using an App
Digital E-Ethnography

18. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Fitbit may have a new way to
detect an irregular heartbeat
Ref. TIME Lisa Eadicicco Aug 21, 2017 Time
The Apple Watch could help
doctors spot this dangerous
heart conditionThe Apple Watch could be used to
detect a heart condi<on that
causes over 100,000 strokes every
year,
The mRhythm project that
resulted from the pairing looked
at the Apple Watch-sourced heart
rate readings from 6,158
Cardiogram users.
Ref. Mashable, BRETT WILLIAMS MAY 12, 2017
50m Registered Users (30m ac<ve)
Est. 14 million units in 2016
Wearable health
100m+ units
REACH: data
from wearables
is the next new
source of pa<ent
data.
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection

19. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Augmented Reality and
Big Data 1987
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Now IBM Watson can
ask the ques<ons and
diagnose the pa<ent
The Digital Pill

20. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Big data
Haphazard unstructured data sources
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Comes from data the
subject has not given
permission to use.
Could be a GDPR or legal PI
issue in the future?
Social listening????

21. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
The impact of GDPR?
EU General Data Protection Regulation
However, just because an
analysis is possible in the
data, this does not mean
that there is an automa4c
right to perform it.
Where consent is the basis
for processing, it must be
established whether any new
use of the data is s4ll
covered by the original
consent given.
Ref. BHBIA
Personal iden<ty
Informed consent
Purpose of use
Not automa<c
Secondary data?
Social media?

22. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Do we have a
blinkered view?
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
The impact of GDPR?
EU General Data Protection Regulation

23. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
AI Machine Language
Big data
Find the needle in the haystack

24. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Quality of data filters down to a rela<vely small unit
Big data
Unstructured bits of random data
Strings or connected bits of data

25. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Quality of data filters down to a rela<vely small unit
Big data
Unstructured bits of random data
Strings or connected bits of data
PredicJve AnalyJcs is the future data
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection

26. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection

27. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
There is always a piece missing
Ethnography
and
What
patients
really want?

28. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Don’t forget these are real people
on the end of your data

29. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Thank You!
John STOREY | Business Unit Director,
SWB: +33 (0)4 78 62 23 23 | DL: +33 (0)6 50 80 05 04
2 Avenue Lacassagne 69003 Lyon France | j.storey@aplusaresearch.com
See A+A’s latest news here! | Follow us on Linkedin and TwiPer

30. Digital Research and Data
John Storey, AplusA Healthcare Research
The Future of
Data Collection
Q & A
John Storey
AplusA Healthcare Research
Sue York
NewMR