Let's Face It Comes to Michigan: Lessons Learned about Web Sites for Persons with Facial Difference

Slide 1: Let's Face It Comes to Michigan: Lessons Learned about Web Sites for Persons with Facial Difference Patricia F. Anderson & Sarah Brittain March 14 & 15, 2007 University of Michigan Dentistry Library / School of Dentistry © 2007 Regents of the University of Michigan. All rights reserved.

Slide 2: Let’s Face It (LFI): What Is It? • Major consumer health information site for persons with facial difference • http://www.faceit.org/ BECAME • http://www.dent.umich.edu/faceit/

Slide 3: 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?"

Slide 4: A Brief History of LFI • 1984 - Let’s Face It support group begun in England by Christine Piff • 1987 - Let’s Face It support group brought to USA by Betsy Wilson • ~1988 - Let’s Face It USA begins newsletter • ~1993 - newsletter twinned on Web • 2006 - Web site moved to UM

Slide 5: 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

Slide 6: LFI & UM: How Did We Get From Point A to Point B?

Slide 7: LFI Website Development 1 Identify Opportunity • Identify Initial Resources • Identify Required Skill Sets • Identify Team • Identify Peer Products • Identify Niche • Identify Specifications • Identify Look & Feel • Identify Deadline •

Slide 8: LFI Website Development 2 Develop Timeline / Schedule • Develop Task Assignments • Develop Mission / Vision • Develop Site Architecture • Develop Survey / Information Gathering Tools • Develop Initial Content • Develop Prototype • Develop Marketing Materials •

Slide 9: LFI Website Development 3 • Completion: Plan Unveiling Event • Completion: Draft Site and Refine • Completion: Release

Slide 10: LFI Website Development 4

Slide 11: Web Sites for Real People (& Patients) • Site Design Most Common Disabilities • Most Common Design Concerns for • Persons with Facial Differences • Content Development Learn the Lingo • Real Patients POV: How do you know? • Questions & Answers •

Slide 12: Web Sites for Real People: Most Common Disabilities Back & Spine Heart • • Blood Invisible • • Cognitive Neurological • • Diabetes Speech • • Extremities Substance Abuse • • Head & Brain Vision • • Source: Hearing • • www.janweb.wvu.edu

Slide 13: Web Sites for Real People: Design for Persons with Facial Difference • How many of those might apply to persons with facial difference? • All of them!

Slide 14: Accessibility Checklists • Provide text equivalent for every non- text element

Slide 15: Accessibility Checklists • All information conveyed by color also available without color • Documents can be read without style sheets

Slide 16: Accessibility Checklists • Equivalent alternatives for any multimedia presentation shall be synchronized with the presentation. • When a web page requires that a plug-in be present on the client system to interpret page content, the page must provide a link to a plug-in. • When an appropriate markup language exists, use markup rather than images to convey information.

Slide 17: Accessibility Checklists • Ensure that foreground and background color combinations provide sufficient contrast when viewed by someone having color deficits or when viewed on a black and white screen.

Slide 18: Accessibility Checklists • Use style sheets (CSS) to control layout and presentation. • Use relative rather than absolute units in markup language attribute values and style sheet property values.

Slide 19: Accessibility DON’Ts • Using images for text, or something other than graphical content • Blinking and flashing pages or text • Auto-refreshing pages

Slide 20: Web Sites for Real People: Content: Learn the Lingo • “Persons with Facial Difference” • Learn more about the target audience Review other web sites on the topic • Join email groups • Talk to people • Ask for opinions of your design and content •

Slide 21: Web Sites for Real People: Content: Real People POV “People” not “patients” • “Different” not “disabled” • “Different” not “abnormal” • If I think I’m not broken, I don’t need to • “be fixed” • Much more …

Slide 22: Web Sites for Real People: Content: Q&A • Directions for new content come from questions received • Questions come by e-mail and phone • 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 •

Slide 23: 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?

Slide 24: 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?

Slide 25: Web Sites for Real People: Content: Q&A • Can you direct me to a website or publication that gives the statistic of how many Americans are facially disfigured? I would like to have this number for a paper that I am writing for my elective class. • I am looking for a group or anyone who has Oral Facial Digital Syndrome. • I am looking for a video or audio tape about image, behavioral skills, or self-image and persons with facial differences.

Slide 26: We Made It! Photos by Cicely Wilson & Keary Campbell

Slide 27: Lessons Learned Social & Environmental Factors • Skill Sets That Made This Easier • Tools That Made This Easier • Desired Social Resources • Desired Environmental Resources •

Slide 28: Lessons Learned: Social & Environmental Factors • A great group of people: everyone cared, everyone got along, everyone worked. • A rich community from which to draw additional expertise. • Serendipitous collection of appropriate and necessary skills. • Model website trusted to meet standards. • Supportive and tolerant infrastructure

Slide 29: Lessons Learned: Skill Sets That Made This Easier • Web master with prior accessibility design experience. • Team leader with prior experience developing and maintaining a variety of health Web sites. • Diverse group of interested clinical experts. • Clinical experts with broad perspectives across several related clinical domains. • Clinic coordinator to provide perspective on patient issues, concerns, and information needs. • Multiple experts and perspectives on psychosocial aspects of the conditions.

Slide 30: Lessons Learned: Skill Sets That Made This Easier 2 • Writing and editing experience. • Experience writing for a consumer health audience; low literacy readability review of content. • Expertise with technical tools and resources to facilitate process, especially Web 2.0 tools and resources. • Radio broadcast experience to help create podcasts. • Graphic artist. • Public relations.

Slide 31: Lessons Learned: Tools That Made This Easier • C-Tools • Moodle <http://www.moodle.org/>. • X500 email discussion groups • Yahoo or Google group • Facilitate discussion among the steering committee, • Disseminate information to members of the public who expressed interest • Coordinate fiscal management of the site • Coordinate responses to queries from the individuals.

Slide 32: Lessons Learned: Tools That Made This Easier 2 • Wiki • Wetpaint <http://www.wetpaint.com/> • PBwiki <http://www.pbwiki.com/>. • Blog: • Blogger <http://www.blogger.com/> • LiveJournal <http://www.livejournal.com/> • WordPress <http://www.wordpress.com/> • Social bookmarking / Del.icio.us • Collect links on a specific topic for review by the group • RSS feeds to topic sections of the Web site • Collaborative selection and deletion of links.

Slide 33: 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.

Slide 34: Lessons Learned: Desired Environmental Resources • Content management system (CMS); • Funding and staff support to continue production of popular printed resources made available through the original site.

Slide 35: Lessons Learned: Issues Resulting in Adjustments • Incorrect perception that the UM site was promoting local clinicians over others. • RESPONSE: • Changing some of the standard terminology used in the site • Adding text to overtly address this issue. • Providing any information about treatment is a major challenge in the current complex political and social environment. • Differing perspectives on what is appropriate treatment between patients, families, and clinicians. • Differing opinions about appropriate treatment in different specialties.

Slide 36: Conclusions • Successful rapid prototyping web development projects require first and foremost a unique information need to which they are responding.

Slide 37: Conclusions 2 • Other critical concerns a strong team; • responsible and responsive leadership; • flexible resources; • administrative support; • funding; • physical resources such as servers; • staff resources such as programmers, graphic • designers, and public relations experts; • a virtual or physical space that supports rapid collaborative development and revision of content.

Slide 38: Conclusions 3 • 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).

Slide 39: Conclusions 4 • Additional desirable features • interactivity and community building resources • guidance from interested individuals from the community serve, with health care professionals in the role of providing support. • To provide all of this in on a brief timeline is probably not realistic

Slide 40: 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, 2007, forthcoming. • 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, 2007, forthcoming.

Slide 41: Questions?