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Social media and the role of technology in improving health
conversations;
21st April 2012Rachel de Sain
Flaxworks
Why Health?
Why diabetes?My mum (the hot one in the middle)
Type 1 diabetes at 30.
Almost dead at 40 after given the wrong medication.
How can social media tools support health conversations?
Industrial
Technology
Mobile
Connected
Revolutions and Change
“the only thing constant is change”
The challenge• Australia’s life expectancy is one of the
highest in the world, second only to Japan
• In 1996, chronic disease accounted for 80 per cent of the burden of disease, measured in terms of loss of years and quality of life
• Over three million Australians, or nearly one in seven, suffer from chronic disease
• Health expenditure as a proportion of Australian GDP has more than doubled over the last four and a half decades from 3.8% to 9%
Using Microeconomic reform to deliver patient-centric Health Care
Technology holds the key
Nielsen: The Australian Online Consumer Report 2011
Slide care of Brandinfiltration.com
http://youtu.be/5mid8p4A6Eg
Technology has changed behaviors, attitudes and activities – it will continue to do so…
Video Summary
• More people heading online to find answers• Trusting word of mouth• Wanting to feel connected and part of a
community• Increasing amount of content coming from
people versus brands• Growing use of social media to create effective
change in health outcomes
Social media is digital content created by the people for the people. Social media is a shift in how people discover, read and share content;
Transforming broadcast media monologues (one to many) into social media dialogues (many to many).
Social Media is
Conversation
SEARCHABLE
INTERACTIVE
ACCESSIBLE
TIMELESS
Social Media
Learning
• A great way to find information
Communicating
• A great way to share information
Connecting
• A great way to be part of the community
Patient Practioner
Learning
• Learning from others• Finding thought leaders• Accessing the latest information
• http://www.youtube.com/watch?v=aUaInS6HIGo
• 23 ½ hours video about how simply 30mins of simple walking a day can make a huge difference.
Diabetes portals
• http://www.youtube.com/watch?v=CQGF1EoXFPs
• http://www.diabetesmine.com/• http://www.tudiabetes.org/
The PatientsLikeMe process is to help people share their health information in order to learn from others like them and then use that information to discuss treatment options with their health care
team
Step 1:Create/update and share your health profile
Step 2:Find support from others like you and compare experiences
Step 3:Learn from aggregated community Treatment and Symptom Reports
Step 4:Take profile to your doctor to have an improved treatment conversation
Step 5:Play an integral part in your own health care
Proprietary & Confidential 35
With over 3,400 patients reporting Type II diabetes and 750 with Type I as a health condition in the US, PatientsLikeMe is well-positioned to aggregate the real-world experience of people living with these challenges
Proprietary & Confidential 36
Giving patients access to their own record is a crucial first step; the next evolution is to permit controlled sharing between patients to help patients learn from one another’s experiences and conduct research
Proprietary & Confidential 37
Can providing patients with the tools to connect with one another improve health outcomes for diabetes patients struggling to manage their condition(s) despite good medical support?
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.
Case Study: Patients Report Benefits of Connecting through a Data-Centric Sharing Platform
Health Information Seeking and Social Media Use on the Internet among People with Diabetes
– Ryan J Shaw1, Constance M Johnson1 1Duke University School of Nursing, Durham, NC
Abstract • Patients who are active and involved in their self-management and
care are more likely to manage chronic conditions effectively (6, 26).
• With a 5-fold increase in the incidence of chronic illness over the past 20 years, access to information can provide patients the tools and support to self-manage their chronic illness.
• New media technologies can serve as tools to engage and involve patients in their health care.
• Thus, the Internet can serve as a mechanism of empowerment (4, 5). This is especially important for people with diabetes mellitus where intensive self- management is critical.
Social media risks
• Growing ESL and CALD community needs
• Americanisation of results• Health literacy / tech literacy
– Understanding who and what to trust
– How much to share– Managing data when
cognitive functions decline• Paranoia versus managing
privacy
Who can you trust?
BJ Fogg – behavior change guru
Gamification
A major factor for reduced independence in older adults
1/3 community dwelling older adults fall each year
10-20% multiple fallers
$18,454 per hospital admission
Total health cost to NSW alone in 2006/2007 $553M
Dr Stuart Smith, Neuroscience Research Centre
Our approach to balance training and fall prevention
Videogames
Gaming
• Usability, consumer engagement and technology adoption.– Make it fun and they will use it– Great tool for education and change adoption
• eHealth needs a solitaire…– Biggest educator of how to use a mouse and windows interface
• Movement based gaming platforms– Rehabilitation, falls prevention
• Intergenerational gaming– Bringing families together
Benefits and Challenges of Social Media for Healthcare
Rare isn’t so rare
Anonymous
Empower yourself
Have more choice
Share your story
Benefit
Benefits and Challenges of Social Media for Healthcare
Rare isn’t so rare
Anonymous
Empower yourself
Have more choice
Share your story
Benefit Americanisation
Scaremongering
Accuracy of Info
Science / Art Balance
Everyone is Different
Challenge
Rachel de Sain
skype: rdesaintwitter: rdesain
Thank you!
Final thought…