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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
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 ?
Another angle altogether on ehealth
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
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Health self-tracking
Image source: http://www.phonearena.com/news/Credit-Suisse-is-bullish-on-wearable-tech_id43206
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Who are these people?
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Rising popularity
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.
Zeo Sleep Manager Actipressure
Sensaris Senspod
uBiome
Mood Panda
23andMe
iBGStar
Fitbit
We are collecting for systematic study…
some primary systems
We are collecting for systematic study…
some secondary systems
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 communicate with Web Services we need to use SOAP messages, which are XML based messages transported over Internet protocols like HTTP, SMTP, and FTP.
Web Services have certain advantages over other
technologies:
· Web Services are platform-independent and language-
independent, since they use standard XML languages.
This means that my client program can be programmed
in C++ and running under Windows, while the Web
Service is programmed in Java and running under
Linux.
· Most Web Services use HTTP for transmitting
messages (such as the service request and response).
This is a major advantage if you want to build an
Internet-scale application, since most of the Internet's
proxies and firewalls won't mess with HTTP traffic
(unlike CORBA, which usually has trouble with
firewalls). In this work, we have placed all utilized sensors on a sock for
better usability and wearability. The sensors are textile, can be easily sewed using conductive thread on the fabric and are even washable. More details on the materials and methods used are provided in the following section.
IV. THE SYSTEM IN PRACTICE: MODULES AND INITIAL
RESULTS
The platform consists mainly of two parts: the wearable part the collects and transmits motion and heartbeat data and the cloud infrastructure for storing the data. For the wearable part we have used textile accelerometers and a heartbeat chest strap by Polar ([1]). The latter sensors are connected to a textile version of the Arduino open hardware microcontroller platform ([6]), called LilyPad ([2]). Arduino is an open-source single-board microcontroller.
An Arduino board consists of an 8-bit Atmel AVR microcontroller with complementary components to facilitate programming and incorporation into other circuits. An important aspect of the Arduino is the standard way that connectors are exposed, allowing the CPU board to be connected to a variety of interchangeable add-on modules.
At a conceptual level, when using the Arduino software stack, all boards are programmed over an RS-232 serial connection, but the way this is implemented varies by hardware version. Serial Arduino boards contain a simple inverter circuit to convert between RS-232-level and TTL-level signals. Current Arduino boards are programmed via USB, implemented using USB-to-serial adapter chips such as the FTDI FT232. Some variants, such as the Arduino Mini and the unofficial Boarduino, use a detachable USB-to-serial adapter board or cable, Bluetooth or other methods.
The Arduino IDE is a cross-platform application written in Java, and is derived from the IDE for the Processing programming language and the Wiring project. It is designed to introduce programming to artists and other newcomers unfamiliar with software development. It includes a code editor with features such as syntax highlighting, brace matching, and automatic indentation, and is also capable of compiling and uploading programs to the board with a single click.
The LilyPad Arduino is a microcontroller board designed for wearables and e-textiles. It can be sewn to fabric and similarly mounted power supplies, sensors and actuators with conductive thread.
( ( )
For example, here’s the CloudSensorSockSystem (Doukas & Maglogiannis, 2011)
And here’s a model of a personal informatics system (Li, Dey, & Forlizzi, 2010)
Image source: http://quantdoctor.com/2012/12/14/npr-interview-the-data-driven-life-understanding-the-quantified-self/
… what if they are multi-tracking?
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… what if they’re trying to be scientific?
… 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
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).
Do social media help health? Which? Who? How ?
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.
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)
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.
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.
New social movements
• The Quantified-Self movement was first developed in
Introduction
Introduction
Citizen science
http://povesham.wordpress.com/2011/11/27/citizen-science-as-participatory-science
Citizen science is doing some interesting things to
research models
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
Raising the bar – service provision
Bornkessel’s networked model for patient centred care Curr Cardiol Rep 16:504, 2014
Raising the bar – service provision relies on…
http://communicatehealth.com/2012/05/we-are-the-90/
Last but not least
Raising the standard of health service provision
by applying professional judgement to adopt and adapt ehealth trends
depends on you …
