Efficiencies of Scale and Empowerment: Consumer Health Website Design Using Social Technologies Patricia F. Anderson , Emerging Technologies Librarian, HSL, University of Michigan <pfa@umich.edu>; Sarah Brittain , Learning Technologies Coordinator, Loyola University-Chicago (previously UM School of Dentistry); Sean R. Meyer , Web Designer, Oral & Maxillofacial Surgery, University of Michigan Health System May 18, 2008 © 2008 Regents of the University of Michigan. All rights reserved.

Let’s Face It (LFI): What Is It? Major consumer health information site for persons with facial difference Slogan: &quot;To support a person with facial difference, look them in the eyes and smile at them.&quot; - Betsy Wilson Mission: To advance knowledge about, by, and for people with facial differences and to promote their full and equal participation in society . Vision: To be recognized as a reputable source of information and resources that those with facial differences, those who care for them, and the general public can go to with confidence and a desire to learn.

Major consumer health information site for persons with facial difference

Slogan: &quot;To support a person with facial difference, look them in the eyes and smile at them.&quot; - Betsy Wilson

Mission: To advance knowledge about, by, and for people with facial differences and to promote their full and equal participation in society .

Vision: To be recognized as a reputable source of information and resources that those with facial differences, those who care for them, and the general public can go to with confidence and a desire to learn.

Let’s Face It (LFI): What Is It? http://www.faceit.org/ BECAME http://www.dent.umich.edu/faceit/

http://www.faceit.org/ BECAME

http://www.dent.umich.edu/faceit/

How LFI Came to Michigan On June 26th, 2006, Patricia Anderson of the UM School of Dentistry Library received an e-mail message that began: &quot;The Let's Face It consumer health website needs a new home. Would you be interested in posting it on your website as your own pages?&quot;

On June 26th, 2006, Patricia Anderson of the UM School of Dentistry Library received an e-mail message that began:

&quot;The Let's Face It consumer health website needs a new home. Would you be interested in posting it on your website as your own pages?&quot;

LFI & UM: Why Us? Prior UM involvement in web sites about craniofacial anomalies and for persons with facial difference Commitment to not-for-profit non-partisan activities In the right place at the right time -- luck

Prior UM involvement in web sites about craniofacial anomalies and for persons with facial difference

Commitment to not-for-profit non-partisan activities

In the right place at the right time -- luck

LFI & UM: How Did We Get From Point A to Point B?

Phase 1: Build the site

Social Tools Helpful in Phase 1 Project management + wiki = Planning

Project management + wiki = Planning

Social Tools Helpful in Phase 1 Blog

Blog

Social Tools Helpful in Phase 1 Blog, merges to web site via RSS feed

Blog, merges to web site via RSS feed

Social Tools Helpful in Phase 1 Del.icio.us (social bookmarking)

Del.icio.us (social bookmarking)

Social Tools Helpful in Phase 1 Del.icio.us to site via RSS

Del.icio.us to site via RSS

Phase One: We Made It! Photos by Cicely Wilson & Keary Campbell

Lessons Learned: Desired Social Resources More time; More varieties of clinical expertise; More people from the team to be involved with contributing to the blog; More release time to support site after initial release; Perspective of persons with facial difference and/or patients; Child Life expert.

More time;

More varieties of clinical expertise;

More people from the team to be involved with contributing to the blog;

More release time to support site after initial release;

Perspective of persons with facial difference and/or patients;

Child Life expert.

Phase 2: Build & enrich the content Building content through community dialog Using social tech tools to create or update content without requiring webmaster to edit pages Enabling team members to create or update content Embedding relevent content created for other purposes

Building content through community dialog

Using social tech tools to create or update content without requiring webmaster to edit pages

Enabling team members to create or update content

Embedding relevent content created for other purposes

Web Sites for Real People: Content: Q&A Directions for new content come from questions received Questions come by mail & phone (traditional) Email and blog comments (new media) Question types: Change / update my entry (organizations) Dead link report / request to update topic content Clinical question / second opinions Questions from clinicians Seeking community & support Seeking funding or clinical care Information about craniofacial anomalies

Directions for new content come from questions received

Questions come by

mail & phone (traditional)

Email and blog comments (new media)

Question types:

Change / update my entry (organizations)

Dead link report / request to update topic content

Clinical question / second opinions

Questions from clinicians

Seeking community & support

Seeking funding or clinical care

Information about craniofacial anomalies

Web Sites for Real People: Content: Q&A My 5-month-old daughter's soft spot has already closed. This was brought to the attention of her pediatrician; he had a cat-scan done and said that there is nothing to worry about. Everything that I have read states that the soft spot should be re-opened. Do we need a second opinion?

My 5-month-old daughter's soft spot has already closed. This was brought to the attention of her pediatrician; he had a cat-scan done and said that there is nothing to worry about. Everything that I have read states that the soft spot should be re-opened. Do we need a second opinion?

Web Sites for Real People: Content: Q&A I have a patient who needs to have dental treatments after head and neck cancer. The patient has Medicare only, and they will not pay for this specific treatment. Do you have any funding for patients like this? Do you know who else may have a foundation dedicated to these patients?

I have a patient who needs to have dental treatments after head and neck cancer. The patient has Medicare only, and they will not pay for this specific treatment. Do you have any funding for patients like this? Do you know who else may have a foundation dedicated to these patients?

Social Tools Helpful in Phase 2 Blog, again

Blog, again

Social Tools Helpful in Phase 2 Blog, again

Blog, again

And more blogs Dr. Z Goes to Kenya

Dr. Z Goes to Kenya

Social Tools Helpful in Phase 2 Slideshare

Slideshare

Social Tools Helpful in Phase 2 Slideshare

Slideshare

Social Tools Helpful in Phase 2 Google Video

Google Video

Social Tools Helpful in Phase 2 Google Video

Google Video

Other Social Tools Considered and not used at this time - Why not? Flickr for images Privacy. Images sometimes misused on facial difference sites to promote fund raising. Podcasts Accessibility of this media to target audience Transcription costs NOTE: We did provide a transcription of the video. Twitter Lack of staff, need for continuous or steady presence

Considered and not used at this time - Why not?

Flickr for images

Privacy.

Images sometimes misused on facial difference sites to promote fund raising.

Podcasts

Accessibility of this media to target audience

Transcription costs

NOTE: We did provide a transcription of the video.

Twitter

Lack of staff, need for continuous or steady presence

Phase 3: Build Community Unique needs of consumer health web sites Need to create a trusted and credible space; Honest, appropriate and expert information worth sharing; A heightened awareness of and commitment to web accessibility requirements; and Sensitivity to the special needs of the target audience (physical, emotional, social, and other).

Unique needs of consumer health web sites

Need to create a trusted and credible space;

Honest, appropriate and expert information worth sharing;

A heightened awareness of and commitment to web accessibility requirements; and

Sensitivity to the special needs of the target audience (physical, emotional, social, and other).

Call to the Community Let's Face It is here to provide information and facilitate connections and support for the broader facial difference community. By the broad community we mean individuals who have facial difference, or their friends or family. We mean any kind of facial difference -- cleft lip or other birth anomalies; as a result of trauma, injury, violence or burns; or resulting from cancer. We mean any kind of facial difference -- mouth, jaws, skull, nose, eyes, ears, skin, or other. There are many common concerns shared by persons with facial difference -- let's come together to help everyone with facial difference.

Let's Face It is here to provide information and facilitate connections and support for the broader facial difference community.

By the broad community we mean individuals who have facial difference, or their friends or family.

We mean any kind of facial difference -- cleft lip or other birth anomalies; as a result of trauma, injury, violence or burns; or resulting from cancer.

We mean any kind of facial difference -- mouth, jaws, skull, nose, eyes, ears, skin, or other.

There are many common concerns shared by persons with facial difference -- let's come together to help everyone with facial difference.

Social Tools for Phase 3 Google Groups: Email group

Google Groups: Email group

Social Tools for Phase 3 Google Groups: Email group

Google Groups: Email group

Social Tools for Phase 3 Facebook

Facebook

Social Tools for Phase 3 Ning

Ning

Social Tools for Phase 3 Second Life Inspired by Goodwillstacy …

Second Life

Inspired by Goodwillstacy …

Social Tools for Phase 3 Second Life … we founded a Second Life support group for facial difference information & advocacy

Second Life

… we founded a Second Life support group for facial difference information & advocacy

Outcomes Phase 1 Successful Phase 2 Successful But need more staff & time Phase 3 Hoping facial difference community will “grow” their own content & empower one another through collaboration But we don’t know yet

Phase 1

Successful

Phase 2

Successful

But need more staff & time

Phase 3

Hoping facial difference community will “grow” their own content & empower one another through collaboration

But we don’t know yet

More Information Anderson PF, Wilson B. Rapid Development of a Craniofacial Consumer Health Web Site: Part One, What Happens Before Content and Coding. Journal of Consumer Health on the Internet 11(2) June 2007:13-31. Anderson PF, Brittain S, Kaufman J, Zwetchkenbaum SR, Murdoch-Kinch CA. Rapid Development of a Craniofacial Consumer Health Web site: Part Two, Content, Coding, Interface and More. Journal of Consumer Health on the Internet 11(3) Oct 2007:47-73.

Anderson PF, Wilson B. Rapid Development of a Craniofacial Consumer Health Web Site: Part One, What Happens Before Content and Coding. Journal of Consumer Health on the Internet 11(2) June 2007:13-31.

Anderson PF, Brittain S, Kaufman J, Zwetchkenbaum SR, Murdoch-Kinch CA. Rapid Development of a Craniofacial Consumer Health Web site: Part Two, Content, Coding, Interface and More. Journal of Consumer Health on the Internet 11(3) Oct 2007:47-73.

Let’s Face It Resources Informational sites: Let's Face It (website): http://www.dent.umich.edu/faceit/ Let's Face It (blog): http://mblog.lib.umich.edu/faceit/ Let's Face It (del.icio.us bookmarks): http://del.icio.us/faceit/

Informational sites:

Let's Face It (website): http://www.dent.umich.edu/faceit/

Let's Face It (blog): http://mblog.lib.umich.edu/faceit/

Let's Face It (del.icio.us bookmarks): http://del.icio.us/faceit/

Let’s Face It Resources Additional content Google Video: Betsy Wilson Speaks About Let’s Face It at the University of Michigan: http://video.google.com/videoplay?docid=2123510808401218131&hl=en Slideshare: Let’s Face It Comes to Michigan: http://www.slideshare.net/umhealthscienceslibraries/lets-face-it-comes-to-michigan-lessons-learned-about-web-sites-for-persons-with-facial-difference

Additional content

Google Video: Betsy Wilson Speaks About Let’s Face It at the University of Michigan: http://video.google.com/videoplay?docid=2123510808401218131&hl=en

Slideshare: Let’s Face It Comes to Michigan: http://www.slideshare.net/umhealthscienceslibraries/lets-face-it-comes-to-michigan-lessons-learned-about-web-sites-for-persons-with-facial-difference

Let’s Face It Resources Community building sites Facebook: Group: Let's Face It: http://www.facebook.com/group.php?gid=14635254465 Google Groups: Facial Difference: http://groups.google.com/group/facialdifference Ning: Facial Difference: http://facialdifference.ning.com/ Second Life: Group: Let's Face It NOTE: Application for Second Life can be downloaded from http://secondlife.com Personal avatar must be created to join Second Life group

Community building sites

Facebook: Group: Let's Face It: http://www.facebook.com/group.php?gid=14635254465

Google Groups: Facial Difference: http://groups.google.com/group/facialdifference

Ning: Facial Difference: http://facialdifference.ning.com/

Second Life: Group: Let's Face It

NOTE: Application for Second Life can be downloaded from http://secondlife.com

Personal avatar must be created to join Second Life group

Free Social Tools Blogger http://www.blogger.com/ Del.icio.us (social bookmarking) http://del.icio.us/ Facebook http://www.facebook.com/ Flickr (photo / image sharing) http://flickr.com/ Google Groups (email lists) http://groups.google.com/ Google Video http://video.google.com/ Ning (social networking) http://ning.com/ Slideshare http://www.slideshare.net/ Twitter http://www.twitter.com/ Wetpaint (wiki) http://www.wetpaint.com/ YouTube http://www.youtube.com/

Blogger

http://www.blogger.com/

Del.icio.us (social bookmarking)

http://del.icio.us/

Facebook

http://www.facebook.com/

Flickr (photo / image sharing)

http://flickr.com/

Google Groups (email lists)

http://groups.google.com/

Google Video

http://video.google.com/

Ning (social networking)

http://ning.com/

Slideshare

http://www.slideshare.net/

Twitter

http://www.twitter.com/

Wetpaint (wiki)

http://www.wetpaint.com/

YouTube

http://www.youtube.com/