By using this site, you agree to the Privacy Policy and Terms of Use.
Accept
Health Works CollectiveHealth Works CollectiveHealth Works Collective
  • Health
    • Mental Health
    Health
    Healthcare organizations are operating on slimmer profit margins than ever. One report in August showed that they are even lower than the beginning of the…
    Show More
    Top News
    physical health
    5 Ways Playing Games Can Improve Neural and Physical Health
    September 9, 2022
    Reasons For Hair Loss and Its Treatment
    Reasons For Hair Loss and Its Treatment
    February 16, 2022
    healthcare organization
    5 Actionable Strategies For Healthcare Organizations
    August 15, 2022
    Latest News
    7 Most Common Healthcare Accreditation Programs: Which Should You Use?
    August 20, 2025
    Hospital Pest Control and the Fight Against Superbugs
    August 20, 2025
    Hygiene Beyond The Clinic: Attention To Overlooked Non-Clinical Spaces
    August 13, 2025
    5 Steps to a Promising Career as a Healthcare Administrator
    August 3, 2025
  • Policy and Law
    • Global Healthcare
    • Medical Ethics
    Policy and Law
    Get the latest updates about Insurance policies and Laws in the Healthcare industry for different geographical locations.
    Show More
    Top News
    Almost Anybody Qualifies for Medicaid in Maine
    November 23, 2012
    ebola and EHR
    Ebola: Are We Relying on EHR to Tell the Story?
    October 24, 2014
    Caitlin Kelly
    How Would You Fix Healthcare? – Question and Answers.
    January 16, 2013
    Latest News
    How Social Security Disability Shapes Access to Care and Everyday Health
    August 22, 2025
    How a DUI Lawyer Can Help When Your Future Health Feels Uncertain
    August 22, 2025
    How One Fall Can Lead to a Long Road of Medical Complications
    August 22, 2025
    How IT and Marketing Teams Can Collaborate to Protect Patient Trust
    July 17, 2025
  • Medical Innovations
  • News
  • Wellness
  • Tech
Search
© 2023 HealthWorks Collective. All Rights Reserved.
Reading: Online Patient Communities Garner Interest at Social Media Week, Toronto
Share
Notification Show More
Font ResizerAa
Health Works CollectiveHealth Works Collective
Font ResizerAa
Search
Follow US
  • About
  • Contact
  • Privacy
© 2023 HealthWorks Collective. All Rights Reserved.
Health Works Collective > eHealth > Social Media > Online Patient Communities Garner Interest at Social Media Week, Toronto
Social Media

Online Patient Communities Garner Interest at Social Media Week, Toronto

Colleen Young
Colleen Young
Share
8 Min Read
SHARE

I was honoured to represent the healthcare sector at Social Media Week Toronto. For the SMWTO official lauch event, PulseCheck, organizers invited 10 representatives from 10 industries to present a 5-minute candid point of view on the status of their industry on the social web – only 3 slides allowed. I choose to talk about online patient communities, the role of providers in patient sharing online and “infoveillance“.

I was honoured to represent the healthcare sector at Social Media Week Toronto. For the SMWTO official lauch event, PulseCheck, organizers invited 10 representatives from 10 industries to present a 5-minute candid point of view on the status of their industry on the social web – only 3 slides allowed. I choose to talk about online patient communities, the role of providers in patient sharing online and “infoveillance“. I was surprised to realize how new these concepts were to so many people not involved in health care social media conversations. But it resonated loudly and clearly, encouraging us to keep talking about it.

tweet testimonial from PulseCheck smwto

For the record, here’s what I said:

More Read

:)
Practical (Tactical) Guidance to Develop Website Content – Video
7 Simple Ways to Strengthen Your Hospital’s Online Brand
Is your Hospital Afraid of Social Media?
First Edition of HealthCare Social Media Review! Request for Submissions!
How to Use Facebook to Build Your Practice

The Social Web for Peer-to-peer Healthcare
Susan Sontag wrote: “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

So what do we do when we get dropped into the kingdom of the sick? We band together. We call and search and text. We consult experts. And our number one objective – get the hell out of the kingdom of the sick and back to the kingdom of the well.

Thanks to the social web people from around the world come together to share information and support. Technology can organize our collective knowledge and make this user-generated information useful and accessible to many. We are building networks online that we tap into when we need help or advice.(1)

In January 2007, Dave deBronkart was diagnosed with a rare kidney cancer and given only 24 weeks to live. His doctor, Danny Sands, prescribed ACOR, an online community for people with cancer. Yes, an online community! From that community of peers, Dave found information that couldn’t be found anywhere else on credible information websites. He was told about a treatment that sometimes works. Community members were quick to point out that the treatment often doesn’t work and that’s why most hospitals don’t offer it and won’t tell you about it. He opted to try the treatment and sought out a cancer centre where he could get the chemotherapy. His last treatment was July 23, 2007, and by September it was clear he was in remission.

For many, Dave is the epitome of an e-patient. While you may be quick to assume e equals electronic, it doesn’t. The e-patient is equipped, enabled, empowered and engaged in their health and healthcare decisions. They have moved mountains via the social web for their own health and the health of others.

Participatory medicineThe Social Web for Participatory Health
Providers who recognize the value of collective health knowledge are pioneering participatory medicine and accepting patients and caregivers as respected and equal partners in their care.

Understanding the potential of peer-to-peer health has led to social health innovation in patient-provider communication and patient self-care. There are too many innovations to mention today, but I’ll touch on a few quickly.

Dr. Joseph Cafazzo and his team at Centre for Global eHealth Innovation at Toronto’s University Health Network partnered with SickKids Hospital to develop BANT, an iPhone app for teenagers with type 1 diabetes. It allows them to capture, store and analyze their glucose readings, and facilitates sharing this information with their healthcare providers. But just as importantly, they can connect with others like them in the diabetes community and take part in gamification activities that encourage their self-care.

Shared electronic health records like Sunnybrook’s MyChart allow patients and their healthcare providers access to their health information as well as to social sharing tools like clinic notes, personal social networks, medical networks and e-messaging.

The Social Web for Public Health
Social health innovation has also been a driver in public health.

Dr. Gunter Eysenbach’s research into the analysis of search, communication and publication behaviour on the Internet led to a fundamental change to global health surveillance. Thanks to this senior scientist from the Centre for Global eHealth Innovation, epidemic intelligence now flows not only through government organizations but also through informal channels, ranging from press reports to social media streams to analyses of Web searches.(2) (3)

For example, when Rumi Chunara, research fellow at Harvard Medical School, and his team analyzed news and Twitter feeds during the early days of the cholera epidemic in Haiti in 2010, they were able to mine for valuable information on the outbreak up to two weeks ahead of surveillance reports issued by the government health ministry. Such social media surveillance has become much more mainstream and encourage development of free tools like healthmap.org and Outbreaks Near Me.

Conclusion
Healthcare providers remain the experts in disease, but recognize that we are the experts in ourselves. Trained professionals give us information and recommended actions to help us

  • stay out of the kingdom of the sick,
  • leave the kingdom of the sick, or
  • live the best quality of life in the kingdom of the sick.

But, it is social health that has increased our ability to quickly and easily get information and support to help us manage our care, our health and our living as it applies to our individual situation. That means we can share not only with people like us, but also collaborate with people who may know more than we do and help inform people who haven’t been there yet.

(1) Adapted with permission from Susannah Fox’s closing keynote Peer-to-peer Healthcare at Medicine 2.0
(2) Eysenbach G. Infodemiology: Tracking Flu-Related Searches on the Web for Syndromic Surveillance. Proc AMIA Symp 2006
(3) Eysenbach G. J Med Internet Res 2009;11(1):e11

Special thanks to Signals for designing the slides.

 

TAGGED:ePatientpatient communitiesSocial Media WeekToronto
Share This Article
Facebook Copy Link Print
Share

Stay Connected

1.5kFollowersLike
4.5kFollowersFollow
2.8kFollowersPin
136kSubscribersSubscribe

Latest News

engineer fitting prosthetic arm
How Social Security Disability Shapes Access to Care and Everyday Health
Health care
August 20, 2025
a woman explaining the document
How a DUI Lawyer Can Help When Your Future Health Feels Uncertain
Public Health
August 20, 2025
physiotherapist at work
How One Fall Can Lead to a Long Road of Medical Complications
Health care
August 20, 2025
Common Healthcare Accreditation Programs
7 Most Common Healthcare Accreditation Programs: Which Should You Use?
Health News
August 20, 2025

You Might also Like

Heart Disease Prevention
CardiologyeHealthPublic HealthSocial Media

Fighting Heart Disease Using the Web: 3 Tips for Success

November 20, 2012
Medical Apps and More Medical Apps
Social Media

Medical Apps Watch: Development, Use and Potential

January 5, 2016
Image
BusinesseHealthSocial Media

Beyond the Buzz: 7 Reasons Healthcare Professionals Should Blog

August 29, 2014

Physicians and HICS: Video

October 17, 2011
Subscribe
Subscribe to our newsletter to get our newest articles instantly!
Follow US
© 2008-2025 HealthWorks Collective. All Rights Reserved.
  • About
  • Contact
  • Privacy
Welcome Back!

Sign in to your account

Username or Email Address
Password

Lost your password?