Another change is happening concurrently. As health economist Jane Sarasohn-Kahn writes, health-related social technologies capture “the exchange of health information and personal stories in a way that transcends both medical textbooks and chatting with a friend on the phone – yet offers some of the benefits of both.”
Certain demographic groups are more likely than others to look online for information about a specific disease or medical problem. These differences have also changed very little over the past six years.
It turns out that e-patients’ enthusiasm for social media is not limited to activities related to health. Internet users who have looked online for health information are more likely than non-health seekers to have created or worked on their own blog, read someone else’s blog, used a social network site, used Twitter or another status update service, and to have consulted Wikipedia. Even when controlling for age, education, and other variables, being an e-patient emerges as a significant predictor for other social media engagement. http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information/03-Social-Media-and-Health/3-Epatients-are-more-likely-than-other-internet-users-to-engage-in-social-media.aspx?r=1
[In addition] When asked, "Now thinking about all the sources you turn to when you need information or assistance in dealing with health or medical issues, please tell me if you use any of the following sources..." 86% of all adults ask a health professional, such as a doctor. 68% of all adults ask a friend or family member. 57% of all adults use the internet. 54% use books or other printed reference material. 33% contact their insurance provider. 5% use another source not mentioned in the list. “ Social Life of Health Information”, Susana Fox, Pew Internet
About two-thirds of e-patients ages 18-49 have done at least one of the activities listed, compared with one-half of e-patients age 50 and older. http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information/03-Social-Media-and-Health/ There are signs that change is coming: First, mobile access is on the rise. Those with mobile access to the internet are more likely than those who have tethered access to contribute their comments and reviews to the online conversation about health and health care. Second, adults between the ages of 18 to 49 are more likely than older adults to participate in social technologies related to health. As younger adults face more health care questions and challenges, they may turn to the tools they have sharpened in other contexts of their lives to gather and share health advice. But in the end, experts remain vital to the health-search and decision-making process. This practice “will not budge” and therefore require designers of any new health care application “to look not ahead, but to look around” in order to see the way forward (John Seely Brown and Paul Duguid, The Social Life of Information. Harvard Business School Press: 2000). http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information/06-Trends-to-Watch/1-Mobile-access-and-generational-shifts-will-each-have-an-effect-on-social-media-and-health-care.aspx?r=1
Add – On July 16, the National Institutes of Health and the Wikimedia Foundation, the nonprofit organization that operates the Wikipedia® online encyclopedia, joined forces to make health and science information more accessible and reliable. This collaboration was the first of its kind for both organizations. http://www.nih.gov/news/health/jul2009/od-14.htm
Frustrated – Was our Web site really addressing people’s questions? People call in with questions, but we are not doing patient care. Our hands were tied, but we could refer them. Then what though? How do we know what happened to them. There were national, online, diabetes communities, but nothing local.
We never dreamed that it would be this big. Ginny knew the system and the educators – who else could help these people navigate the system? Bolster existing networks.
Used Web 1.0 technology (e-mail and html) to do Web 2.0 activities.
1 st of 3 examples – Ask Ginny helps identify and address community needs, market and improve local resources, and share information and personal stories
Spike during KUTV Ask the Expert Time on page
Utah cities and towns are highlighted, many of which are distant and rural communities.
CDE becomes moderator Twitter – Microblogging, 140 characters On Twitter: # designates a keyword (or hashtag such as #diabetes) and @ directs the message to someone (such as @AskGinny) Links are usually shortened urls, so you should specify the source of the link: http://www.rikomatic.com/blog/2009/06/twitter-as-an-event-organization-tool-our-experience-with-the-frankie-95-birthday-festival.html Becomes http://bit.ly/3X0jG
Try http://www.blogspot.com, http://www.wordpress.com, Linking to Twitter and using Google Analytics are all just options. Only put on your plate as much as you can handle.
Ning – Personalize-able Facebook where CDE becomes the moderator Discussions are already happening among CDEs on AADEs Facebook page 10,000~ people “touched by diabetes” are on TuDiabetes.com (which is Ning-based)
Created a series of interconnected web sites and applications that are easier to publish to, follow, link to, search for, share, and comment on.
Ning – Personalize-able Facebook Moderator – Twitter – Microblogging, 140 characters
http://www.ncbi.nlm.nih.gov/sites/entrez/ Search: osteoarthritis african american women
http://twitter.com/PublicHealth
http://twitter.com/NPHW
In theory, you should be able to configure your blog once, and never again have to think about the software. With the most basic blogging software, such as Blogger.com, this is definitely the case. It takes 15 to 30 minutes to set up a blogger account and create your first blog. After that, you more or less just type in your latest blog entry and click “Publish”. The more serious you become about blogging, the more complex the software becomes and the more likely it is that you’ll need to get your hands dirty tweaking html, css, php and other types of code. WordPress and Movable Type are examples of complex but powerful blogging programs.
Most blogs have a comments area to facilitate feedback and conversation, though some sites have had to moderate or disable comments due to the prevalence of spam. Comments let browsers respond to the initial blog post, but also lets them respond to other comments, so you can have a conversation with dozens or hundreds of participants. Most blogs also have permalinks and RSS feeds. The homepage of a blog has multiple posts and changes constantly, while a permalink sends folks to static, unchanging copy of a single post. We’ll discuss RSS feeds a bit later.
The newest entries appear at the top of the home page, and older entries move down the page, eventually disappearing from the home page altogether. All posts are automatically archived by date so that visitors can still access older posts. Links to the archived posts can usually be found on the left or right-hand side of the home page.
The characteristics of good blog writing are similar to the characteristics of good web writing in general. Keep paragraphs short and make frequent use of bulleted or numbered lists. Make the title of each post as descriptive as possible. Draw people into your blog by discussing your own feelings and experiences. Popular blogs reveal the individual voice and personality of the author.
Show the following examples: http://nnlm.gov/scr/blog/?p=176 (South Central Region post-Katrina) http://nnlm.gov/gmr/blog/2008/06/17/regional-flooding-storm-reports/ (GMR post-midwest flooding)
http://www.medworm.com/ Grunt Doc: http://gruntdoc.com/ Health, Science & Libraries, http://mblog.lib.umich.edu/hsldir/ JMLA Case Studies in Health Sciences Librarianship, http://jmlacasestudies.blogspot.com/ On the Wards, http://onthewards.com/ Running a Hospital, http://runningahospital.blogspot.com/ Life as a Healthcare CIO, http://geekdoctor.blogspot.com/ More where this came from: http://del.icio.us/gmrtechcood/astho2008
There is an About link – Good sign, not much information Google the authors or editors – Matthew Holt http://www.matthewholt.net/ Follow the Background page – For my resume click here – 1991 - 1993 M.S. in Health Services Research , Stanford University 1989 - 1990 M.A. in Political Science, Stanford University 1982 - 1985 B.A. (Honours), Social and Political Science, Cambridge University, England Experience is relevant. John Irvine – Can’t pin down his background or education – Beware!
Weighing in on Social Media for Diabetes Educators - Presentation Transcript
ADEU Update Pre-Conference Workshop November 4, 2009 Presented by Nancy Lombardo, MLS; Todd Vandenbark, MLS/TM; Ginny Burns, CDE, RN, MEd; Grant Sunada, MPH Weighing in on Social Media Hands-On Social Media Workshop
Objectives
Be able to define “Web 2.0” technologies and describe their characteristics
Learn how to apply relevant Web 2.0 technologies
Practice using some of the technologies
Discuss ways to incorporate Web 2.0 into your professional life
Have fun!
Overview
Web 2.0 definitions
What is Social Software?
What is it good for?
Web 2.0 and Diabetes
Our conundrum
How to start?
Social Networking: Listening, Connecting, Creating
Listening: RSS – Hands On
Connecting
“ Micro-blogging” (Twitter) – Hands On
Facebook – Hands On
Creating: Blogs – Hands On
Questions
Conclusions
Diabetes in Utah
More than 120,000 Utah adults (6%) have been diagnosed with diabetes 1
13.3% of Utah adults with diabetes are uninsured 2
Utah Health Status Survey (2007-2008). Office of Public Health Data. Utah Department of Health, Salt Lake City, UT
Utah BRFSS 2005-2008
Why in Utah
Minorities have risen from 1.9% (1960) to 17.7% (2007) 1
Disparities exist in age-adjusted percentages of Utahns with diabetes by race & ethnicity 2
Pamela S. Perlich, http://health.utah.gov/cmh/data/UtahDemographicTransformation.pdf
Diabetes in Utah (2008), http://health.utah.gov/diabetes/pdf/fctsandfig/diabetesinutah_book_May08.pdf
American Indian Pacific Islander African American Non-Hispanic White Asian American Hispanic/Latino
Our society is changing … so is the World Wide Web
Web 2.0 Definitions
Web 2.0
Static
Lecture
Expert-Model
Interactive
Conversation
Consumer [Patient]-Model
Public wants to have all the information
From multiple sources
In ways they can understand
From experts AND peers
When they want it
Web 1.0
http://www.brochure2blog.org/
What Is Web 2.0?
Originally coined by Tim O’Reilly of O’Reilly Publishing in 2003
More likely than younger generations to look online for health information.
Health questions drive those age 73 and older to the internet just as frequently as they drive Generation Y users, outpacing teens by a significant margin
“ Get health info” http://www.slideshare.net/PewInternet/generations-online-in-2009-charts
S. Fox, http://www.pewinternet.org/Reports/2007/Epatients-With-a-Disability-or-Chronic-Disease.aspx
S. Fox, http://www.pewinternet.org/Reports/2008/The-Engaged-Epatient-Population.aspx
Web 2.0 and Diabetes (cont.)
E-patients living with a chronic condition are more likely than others to say that online info:
Affects decisions about how to treat an illness
Prompts new questions of a doctor
Changes the way they cope with a chronic condition or manage pain 1
However, they feel frustrated by a lack of info or an inability to find what they are looking for
S. Fox, http://www.pewinternet.org/Reports/2007/Epatients-With-a-Disability-or-Chronic-Disease.aspx
S. Fox, http://e-patients.net/archives/2009/01/doing-our-best-to-blow-your-minds-emerging-trends-in-chronic-disease-care.html
Our Conundrum
Most people under age 40 are fully engaged with “social media”
but not yet dealing with chronic illness
Most people over 60 are starting to face chronic conditions
but are not participating in social media
This is changing, but what do we do???
S. Fox, E-patients With a Disability or Chronic Disease, http://www.pewinternet.org/trends.asp
Provide the Best Information Using the Best Communication Methods
Don’t just tell people what to do
Try to empower them to be better consumers of health information
Make it easier to distinguish good information from bad
Rise above junk-info
User-generated content is here to stay
Real risk is for diabetes professionals to be quiet
Tailor content and delivery to the audience
Encourage their participation
Promote dialogue
Enable people to tell their personal stories
http://www.brochure2blog.org/
How to proceed or even start?
People generally don’t believe that the Internet is a panacea 1
But it is empowering patients like never before 2
What do you do now?
Listen
Connect
Create
S. Fox, http://www.pewinternet.org/Reports/2008/The-Engaged-Epatient-Population.aspx
e-Patients: How they can help us heal healthcare, http:// www.acor.org/epatientswiki/index.php /
Listening Creating Connecting BLOG Fooducate : 3 steps to embrace social media for RDs #FNCE2009 http://yfrog.com/0r42459875j 12:44 PM Oct 19th http://twitter.com/fooducate/statuses/4998762906
Developing a strategy: Identify Target Audiences, Goals and Mediums
Starting point – Utah Diabetes Prevention and Control Program
Knew that online resources provided general information about diabetes
Received a lot of requests for more specific, local information
Forward to Local Expert* Local Diabetes Questions Local Answers ???? * “Local Expert” not necessarily a diabetes expert
Identify Target Audiences, Goals & Mediums
Goal – Help connect the members of our community who have diabetes
Support each other
Gain a better understanding of our disease
Connect with local resources
Forward to Local Diabetes Expert Record for Public Reference Local Answers Local Diabetes Questions
Addressing a Community Need
Gestational patient
High glucose levels
Difficulty getting into a free clinic and sliding-scale fee clinic
Calls were made in her behalf
Led to a discussion with medical directors
Improving local resources
Patient had Primary Care Network insurance
Had questions about diabetes pump supplies
Called state office but information was confusing for patient and PCN staff
Notified State office
Arranged for more training for PCN staff members about diabetes products
Sharing Information & Experiences
Hypoglycemia question
Individual had a chance to describe her unique symptoms
Sends note back saying it was helpful to understand she was not alone
Entrance Keywords
What did a person type into their search engine to find Ask Ginny?
cost of insulin pump utah
carbohydrates lip tingle
colds and flu medication for diabetics
carbohydrate grams for pre diabetes vegetarian
my ears are buzzing help i'm a diebetic
minimed supplies utah
diabetes ideal glucose number
blue cross blue shields of utah diabetic pump coverage
where to purchase a minimed insulin pump in utah
i am a type 1 diabetic..should i exercise when i have a cold
diabetes type 2 grams of carbs for dinner
how many grams of sugar is o.k. on a daily basis for someone with type 2 diabetes
how many grams of carbohydrates are in 1 piece of pumpkin pie
is there a place where i can get a free high blood check in salt lake city, utah
diabetes help utah
program for uncontrolled diabetes
questions to ask on diabetes
i had a glucose level of 104 but my a1c was normal
blocked nose and low glucose levels
gestational diabetes vegetarian menu
Intermountain Healthcare Intranet
Improved interactions between
Provider-Patient
Provider-Provider
Patient-Patient?
We know that it is powerful
Think globally, but … what can you do locally?
Create a public or private Twitter account
Example from Frankie95 1
Option to connect via Internet and/or text messages
Set up to receive questions and comments via e-mail
Patients can also respond to questions
Moves beyond Q&A
Link to Twitter account with TwitterFeed
Use keywords (“meta-tags”) to increase people’s ability to find your blog
Remember to track your web traffic with Google Analytics , Wordpress or others
Think globally, but … what can you do locally?
Join or create a diabetes social network on Facebook.com or Ning.com
Join an existing national or international network
AADE on Facebook
TuDiabetes.com
Connect local support groups
Create a local identity
Local diabetes educators and experienced e-patients become “moderators”
Next steps for Ask Ginny
Converted Ask Ginny to a Blogspot blog
Linked blog to Twitter
Linked both to a Facebook Page
Creation of “Ask Ginny & Friends”
Improved sustainability
Next steps for diabetes in Utah
Create a tool for diabetes educators and professionals under the working title
Online Family & Community Health Center
Use empowerment education model 1 to help those affected by diabetes:
Reflect on self-management experiments
Discuss the emotional experience of living with diabetes
Engage in systematic patient-centered goal setting and problem solving
Answer clinical questions and provide culturally tailored education materials
Martha M. Funnell, Robin Nwankwo, Mary Lou Gillard, Robert M. Anderson, and Tricia S. Tang. Implementing an Empowerment-Based Diabetes Self-management Education Program. The Diabetes Educator, 2005, 31: 53-61.
Next steps for diabetes in Utah
Target audience
Uninsured people affected by, or at risk for, diabetes
Those who care for and care about them
Reach
Partner with universities to conduct market research
Explore public kiosks, public libraries, ATMs and elementary schools
Utilize text messages, existing media channels and support groups
Launch – First Phase – World Diabetes Day (14 November 2009)
The Faces of Diabetes in Utah
Inspired by local girl scout
Current site – http://inspiredbydiabetes.blogspot.com
Future site – http://health.utah.gov/facesofdiabetes
Social Networking
Listening Creating Connecting BLOG Fooducate : 3 steps to embrace social media for RDs #FNCE2009 http://yfrog.com/0r42459875j 12:44 PM Oct 19th http://twitter.com/fooducate/statuses/4998762906
Listen, Connect, Create
RSS - Listen and Connect
R eally S imple S yndication
Subscribe to information “feed”
Receive updates automatically
“ Current Awareness Service”
Automatically receive PubMed searches, journal table of contents or news
New information tailored to your interests
No email overload!
The “Old Way” – Web sites
The “New Way” – RSS feeds
How do you find an RSS feed?
Search for RSS feeds:
http://technorati.com
http://newsisfree.com
http://medworm.com
OR ask a colleague or friend
As you are surfing, watch for the bright orange icon…
Using and reading RSS feeds
Play around with various services
See which one works best for you (and that is easy to use!)
PubMed and RSS PubMed: http://pubmed.gov/
PubMed and RSS
Keep up with the current literature
Receive literature updates from PubMed searches
Professional Journal and Current Awareness RSS Feeds
Diabetes Educator http://tde.sagepub.com/rss/
American Diabetes Association journals (4 Titles) http://diabetes.diabetesjournals.org/rss/
Medscape Headlines in RSS http://www.medscape.com/pages/public/rss
RSS Demo and Exercise
Listening Creating Connecting BLOG Fooducate : 3 steps to embrace social media for RDs #FNCE2009 http://yfrog.com/0r42459875j 12:44 PM Oct 19th http://twitter.com/fooducate/statuses/4998762906
Connect: Micro-blogging
A means of publishing brief text updates
140 or fewer characters
Possible uses
Communications: keeping up with colleagues and leaders in your field
Communications: control over your message
Marketing 1: publicizing services, trends, events and resources
Marketing 2: identify your community and build those relationships
Twitter
http://twitter.com
The short micro-blog messages are called “Tweets” (< 140 characters)
You can “follow” your colleagues
They can “follow” you
Search topics or people
Ways to Send a Tweet
Directly on Twitter’s website
Through an IM client (GoogleTalk, Jabber)
From your mobile phone
Twitter Demo
http://twitter.com
Who uses Twitter?
Utah Diabetes http://twitter.com/UtahDiabetes
Ask Ginny http://twitter.com/askginny
American Diabetes Association http://www.diabetes.org/
Amer Assoc of Clinical Endocrinologists (AACE) - http://www.aace.com/
Utah Diabetes - http://twitter.com/UtahDiabetes
Ask Ginny - http://twitter.com/askginny
American Diabetes Association - http://www.diabetes.org/
Twitter Problems
Down time
Sustainability
Privacy
Adds to distraction level
Productive Uses for Twitter
“ Push” out information to the public
Health Alerts
Services
Newsletter
Events
Wellness Coaching
Individual
Weight management
Smoking cessation
Social Support System
Twitter Discussion
What do you think? Useful or waste of time?
Let’s try it!
Connect - Facebook
http://facebook.com
Find friends
Post status
Chat
Email
Join groups
Play games
Share Photos
Be a “fan”
Facebook
Facebook Pages
A public figure, business, or organization can create a Facebook Page to share information, interact with their “fans”
Optimized to represent a business, or organization
Separate from user profiles
Pages can only be created to represent a real organization, and may only be created by an official representative of that entity
Use your personal account to manage a Facebook Page for your organization
Facebook Groups
An informal network
Used for discussions and special events
Can help organizations connect with their stakeholders
Employees
Customers/services users
Shareholders
General public
Anyone can create a group
Exercises
Exercises
Exercises
Exercises
Listening Creating Connecting BLOG Fooducate : 3 steps to embrace social media for RDs #FNCE2009 http://yfrog.com/0r42459875j 12:44 PM Oct 19th http://twitter.com/fooducate/statuses/4998762906
Create - Blogs
In theory, blogs take the complexity out of creating content, or publishing, on the web
Most blogs have a comments area to facilitate feedback and conversation
Blogs are (usually) organized in reverse chronological order
Blogging started out as first-person, informal communication
Blogging has evolved to include professional, political, and editorial communication/publication
How a blog can benefit a healthcare organization?
Destination for information and community news
Responsive to feedback
More staff can be involved with the website
Including the public in the “discussion” is easier
Emergency notifications
Blogs for Diabetes Information
Who is the author?
Is she or he affiliated with a reputable organization?
What is the author's educational background or experience?
What is their area of expertise?
Is the information provided based on proven facts?
Is there information provided to support statements of fact?
Evaluate blogs as a source
Search Engines for Blogs
Google blog search: http://blogsearch.google.com/
BlogCatalog with directory for browsing: http://www.blogcatalog.com/directory/
May be better off searching Google with “blog” in the search.
Medworm: http://www.medworm.com/
Blog Software
Online ( free, hosted) services
Blogger.com - http://blogger.com/
TypePad - http://www.typepad.com/
Software installed on your server
WordPress (open source)
MoveableType (commercial)
Blog Features
Features to look for when choosing blog software:
Authors and permissions
Comments
Notification services
Categories
Customization options
Templates vs. programming
Publishing options
Publish from e-mail or mobile device
RSS feeds
Blog Exercise
Questions?
Will you use Social Networking tools in your future work?
What opportunities for communications and collaboration in your work might be possible with these tools?
Weighing in on Social Media
Hands-On Social Media more
Weighing in on Social Media
Hands-On Social Media Workshop
ADEU -- Association of Diabetes Educators of Utah
Update Pre-Conference Workshop
November 4, 2009
Presented by Nancy Lombardo, MLS;
Todd Vandenbark, MLS/TM;
Ginny Burns, CDE, RN, MEd;
Grant Sunada, MPH less
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