Efficiencies of Scale and Empowerment: Consumer Health Website Design Using Social Technologies
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Efficiencies of Scale and Empowerment: Consumer Health Website Design Using Social Technologies

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Presentation for Medical Library Association 2008 on the uses of various social technologies in a three-phase web development project.

Presentation for Medical Library Association 2008 on the uses of various social technologies in a three-phase web development project.

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    Efficiencies of Scale and Empowerment: Consumer Health Website Design Using Social Technologies Efficiencies of Scale and Empowerment: Consumer Health Website Design Using Social Technologies Presentation Transcript

    • 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.
    • Let’s Face It (LFI): What Is It?
      • 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;
    • 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
    • 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
    • Social Tools Helpful in Phase 1
      • Blog
    • Social Tools Helpful in Phase 1
      • Blog, merges to web site via RSS feed
    • Social Tools Helpful in Phase 1
      • Del.icio.us (social bookmarking)
    • Social Tools Helpful in Phase 1
      • 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.
    • 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
    • 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
    • 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?
    • 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?
    • Social Tools Helpful in Phase 2
      • Blog, again
    • Social Tools Helpful in Phase 2
      • Blog, again
    • And more blogs
      • Dr. Z Goes to Kenya
    • Social Tools Helpful in Phase 2
      • Slideshare
    • Social Tools Helpful in Phase 2
      • Slideshare
    • Social Tools Helpful in Phase 2
      • Google Video
    • Social Tools Helpful in Phase 2
      • 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
    • 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).
    • 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.
    • Social Tools for Phase 3
      • Google Groups: Email group
    • Social Tools for Phase 3
      • Google Groups: Email group
    • Social Tools for Phase 3
      • Facebook
    • Social Tools for Phase 3
      • Ning
    • Social Tools for Phase 3
      • Second Life
        • Inspired by Goodwillstacy …
    • Social Tools for Phase 3
      • 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
    • 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.
    • 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/
    • 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
    • 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
    • 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/