Invited presentation, Technology in Diabetes Joint Symposium, Australian Diabetes Society & Australian Diabetes Educators Association Annual Scientific Meeting, August 2014.

1. Ehealth:
enabling self-management,
public health 2.0 and citizen science
Kathleen GRAY
2014 Annual Scientific Meeting
Australian Diabetes Educators Society and Australian Diabetes Society

2. Ehealth - makes me think of…
Telehealth incentives, pilots, rebates?
MyPHR, formerly known as PCEHR?
NEHTA & AMT, DCM, HI, NASH, SNOMED-CT-AU?
Why e-health is so hard. Enrico Coiera. Med J Aust 2013;
198 (4): 178-179 ?

3. Another angle altogether on ehealth

4. Emerging ehealth trends
• The array of health self-tracking apps and devices available to
consumers
• The number and nature of online social media by / for / with
people with health conditions
• New social movements such as the Society for Participatory
Medicine and the Quantified Self
• Citizens crowdsourcing data sets to explore their own
biomedical research questions
• Raising the bar for research design, care planning and service
provision in our health systems

5. 5
Health self-tracking
Image source: http://www.phonearena.com/news/Credit-Suisse-is-bullish-on-wearable-tech_id43206

6. 6
Who are these people?

7. 7
Rising popularity

8. So many diabetes apps but so few users?
http://www.research2guidance.com/shop/index.php/diabetes-app-market-report-2014
• Diabetes App Market Report 2014 from German firm Research2Guidance
• Only 1.6 million of the world's diabetics who have access to a smartphone or other
mHealth-capable device – 1.2 % of the target diabetic population – used a diabetes app
by the end of 2013.
• Many of the 1,100 diabetes-related apps on the market today still rely on manual input of
data, have problems integrating with existing blood-glucose meters or fail to do what
diabetics want them to do – namely, measure blood sugar, activity and food intake.
• Fewer still include motivational messages, communication or gamification tools.
• Predicted: diabetes apps users will grow to 7.8 % of the addressable market by 2018,
with:
– The evolution of mobile apps from a stand-alone product to one that can be bundled
with other apps and devices;
– More and better apps that meet best practice guidelines;
– Reimbursement from payers.

9. Zeo Sleep ManagerActipressure
Sensaris Senspod
uBiome
Mood Panda
23andMe
iBGStar
Fitbit
We are collecting for systematic study…
some primary systems

10. We are collecting for systematic study…
some secondary systems

11. More of our research questions about self-tracking:
how do people manage their data?
system exposes also various functions (such as alert management
and data overview) on mobile devices or third applications (like a
fall detection analysis) through Web Services.
Figure 2. Illustration of the architecture, main components and interaction with
users.
Currently, the most open and interoperable way to provide
access to remote services and/or enable applications to
communicate with each other is to utilize Web Services. The
term Web Services is fairly self-explanatory, it refers to
accessing services over the web. But, there's more to it than that,
the current use of the term refers to the architecture, standards,
technology and business models that make Web Services
possible. According to various available definitions, Web
Services are self-contained, self-describing, modular applications
that can be published, located, and invoked across the Web. Web
Services perform functions, which can be anything from simple
requests to complicated business processes. In other words, Web
Services are interoperable building blocks for constructing
applications. A Web Service is usually identified by a URI
(Unified Recourse Identifier).
A Web Service has WSDL (Web Service Description
Language) definitions. These are computerized descriptions of
what the Web Service can do, where it is located and how it can
be used (referred as ‘consumed’) by the client application. To
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For example, here’s the CloudSensorSockSystem (Doukas & Maglogiannis, 2011)
And here’s a model of a personal informatics system (Li, Dey, & Forlizzi, 2010)

12. Image source: http://quantdoctor.com/2012/12/14/npr-interview-the-data-driven-life-understanding-the-quantified-self/
… what if they are multi-tracking?

13. 13
… what if they’re trying to be scientific?

14. … what if they are sharing with other people?
• 43% of trackers with 2+ conditions share their data, 71%
share with a clinician (Pew, 2013)
• international online survey of 200+ people (HaBIC, 2014):
74% of respondents share their data

15. Bringing us to … public health 2.0
“In the age of social media, information is no longer
constrained to vertical channels of authority; ideas are
shared freely between citizens who can inform or misinform
the public.”
Keller, Brett, et al. "Mind the gap: social media engagement by public health researchers."
Journal of medical Internet research 16.1 (2014).

16. Do social media help health? Which? Who? How ?

17. Some of our evidence from 200+ people with chronic
pain who are using social media
Well-educated women experience psychosocial outcomes
from narrative affordances of social networking sites.

18. But wait – there’s more…
What?
Open-source disease control software - developed by patients for patients and shared via social
networking sites. Diabetes examples:
• GNU Gluco Control
• MySHI (My Self Health Information)
• Pump Download
Why?
• desire for a more active role in managing their diseases
• annoyance with common product defective-by-design vendor lock-in mechanisms
Where?
Online patient communities:
http://www.tudiabetes.org http://juvenation.org http://www.diabetesdaily.com
http://www.diabetessupport.co.uk http://www.shootuporputup.co.uk
http://midiabetes.cl http://worldgnat.wordpress.com
(Teixeira, 5th International Conference on Well-Being in the Information Society, Turku, Finland, August 18-20, 2014 p. 203)

19. And soon Google may know how healthy you are.
http://theconversation.com/is-googles-project-to-monitor-healthy-people-just-a-bit-creepy-29875
• A project, developed by Google's experimental Google X wing
and called Baseline Study, this year started harvesting
anonymous genetic and molecular information from 175
people, using wearable technology.
• It plans to draw genetic and molecular data from thousands
more people, to create a picture of a person in perfect health,
as a baseline for [….].
• Project Baseline will use Google's computational power to
identify "biomarkers" in the data that could help people stave
off or avoid health issues.
• Medical science has traditionally discovered biomarkers for
late stage diseases, but Google hopes that Project Baseline
will also be able to crunch through data to detect tendencies in
our bodies that can be addressed before they become life-
threatening.

20. Google isn’t alone in organising at scale
New social movements of patients and healthcare
consumers have been emerging for as long as the social
web has, e.g.
• PatientsLikeMe 2004
• CureTogether 2008
• Society for Participatory Medicine 2009
• Quantified Self 2010
• Their ability to crowdsource and process health and
biomedical data is unparallelled.

21. New social movements
• The Quantified-Self movement was first developed in

22. Introduction

24. Introduction

25. Citizen science
http://povesham.wordpress.com/2011/11/27/citizen-science-as-participatory-science

26. Citizen science is doing some interesting things to
research models

27. Raising the bar – an expanded concept of health and health care
Health 2050: The Realization of Personalized Medicine through Crowdsourcing, the Quantified Self, and
the Participatory Biocitizen M. Swan, J. Pers. Med. 2012, 2, 93-118

28. Raising the bar – service provision
Bornkessel’s networked model for patient centred care Curr Cardiol Rep 16:504, 2014

29. Raising the bar – service provision relies on…
http://communicatehealth.com/2012/05/we-are-the-90/

30. Last but not least
Raising the standard of health service provision
by applying professional judgement to adopt and adapt ehealth trends
depends on you …

31. © Copyright The University of Melbourne 2014
Thank you!
Contacts / enquiries:
health-informatics@unimelb.edu.au