efficiencies of scale and empowerment: consumer health website design using social technologies

Efficiencies of Scale and Empowerment:

Consumer Health Website Design Using Social Technologies

Efficiencies of Scale and Empowerment:

Consumer Health Website Design Using Social Technologies

Patricia F. Anderson, Emerging Technologies Librarian, HSL, University of Michigan

<[email protected]>; 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

Patricia F. Anderson, Emerging Technologies Librarian, HSL, University of Michigan

<[email protected]>; 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: "To support a person with facial difference, look them in the eyes and smile at them." - 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: "To support a person with facial difference, look them in the eyes and smile at them." - 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.



• 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 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:

"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?"

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

"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?"

LFI & UM: Why Us?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?

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

Phase 1: Build the sitePhase 1: Build the site

Social Tools Helpful in Phase 1


Project management + wiki = Planning

Project management + wiki = Planning



Blog Blog



Blog, merges to web site via RSS feed

Blog, merges to web site via RSS feed



Del.icio.us (social bookmarking) Del.icio.us (social bookmarking)



Del.icio.us to site via RSS

Del.icio.us to site via RSS

Phase One: We Made It!Phase One: We Made It!

Photos by Cicely Wilson & Keary Campbell

Lessons Learned: Desired Social Resources

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

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



• 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?



• 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?



Blog, again

Blog, again

And more blogs

And more blogs

Dr. Z Goes to Kenya

Dr. Z Goes to Kenya



Slideshare Slideshare



Google Video Google Video


Social Tools Helpful in Phase 2 Google Video Google Video

Other Social ToolsOther 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 CommunityPhase 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 CommunityCall 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 3Social Tools for Phase 3

Google Groups: Email group Google Groups: Email group


Facebook Facebook


Ning Ning


Second Life Inspired by

Goodwillstacy …

Second Life Inspired by

Goodwillstacy …


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

OutcomesOutcomes

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 InformationMore 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 ResourcesLet’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/


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


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 ToolsFree 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/

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/

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/

efficiencies of scale and empowerment: consumer health website design using social technologies

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