Keynote diabetes

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

rdesain@flaxworks.com.au

skype: rdesaintwitter: rdesain

Thank you!

Final thought…