Bridging the Digital Divide: Harnessing Internet Resources for Successful Patient Outcomes

Bethlyn Houlihan, MSW, MPH New England Regional SCI Ctr Boston Medical Center AASCIPSW Annual Conference September 5-7, 2006

Learning Objectives

1) Participants will understand usage patterns of people with disabilities (pwd), including SCI, compared to the general population.

2) Participants will be able to summarize relevant research on the Internet’s impact on people with SCI, particularly social and peer support.

3) Participants will recognize applications of research findings in practice and in directing future research.

Introduction: Why the Internet?

• Internet impacts every aspect of modern global society – “Internet access is no longer a luxury item...” (US Dpt of Commerce, 2001) – As crucial to societal participation as the telephone • Pwd increasingly using Internet for health info & resources – Safety concerns: predators & misinformation • Application to broad range of patient interventions & outcomes

The Digital Divide for People with Disabilities

• Disability status = race / ethnicity • Pwd owning computer: 24% vs. 52% (Kaye, 2000) • ~25% - 50% less likely to have home Internet access ( ibid ; Dpt of Commerce, 2001) • Range: 10% to 65% use the Internet – differing disability definitions – 2006 rate for SCI = 65% (Goodman, unpub .) • Divide is lessening, but of greater magnitude for those without (Katz, 2001; Roulstone, 2003)

Double Jeopardy Phenomenon in SCI

(Goodman, unpub ; Drainoni, Houlihan et al, 2004) – Education: – Income: • <10K HS (59%) vs Bachelors+ (92%) – Race/Ethnicity: – Marital Status: 32% • 10K - 25K 63% • 25K+ - 50K 79% • 50K+ - 75K 83% • 75K+ 91% White (72%) vs African American & Hispanic populations (40%) – Employment Status: Employed (83%) or Student (89%) vs Unemployed/retired (60%) Married (74%) vs Single/Divorced/Widowed (60%)

Barriers to Internet Access for Ppl w/ SCI

• Other observed barriers: – Adaptive equipment • Assessment needed, product testing, expense – Inexperience w/ computers &/or Internet – More “active” personality type • Research demonstrating this – Lack of awareness of available resources & services online

Primary Uses of Internet

Type of Use Info Search Email Shopping Disability/ Health Info Entertainmen t Job Search School NERSCIC, 2006 SCI 65%* 59 43 40 28* 25 - NCDDR Survey, 2000 Pwd 58% 52 16 38* 31 18 10 Kaye, 2000 Pwd 63% 67 17 - Gen Pop 64% 75 23 - 39* 16 29 45* 17 35

Trends in Seeking Health Info Online

Study by Anderson (2004) of 186 adults: computer-assisted telephone interviews, national random sample • In 2002, 80% of US adults sought health info &/or services online • Only ~10% e-mailed w/ providers, purchased supplies online, managed a chronic disease online • > 50% want to use Internet for clinical purposes • Major barriers: potential threats to privacy, inaccuracy of info, problems in evaluating the quality of online info & services, & physician disapproval

Relevant Internet Applications

• Social & peer support • Patient education & empowerment • Access to resources • Life management

Social & Peer Support: Internet Applications

• Email • Chat rooms • Message Boards • Dating & friend matching sites • Online support groups • Online peer support • Online counseling/therapy • Rehab group processing (NERSCIC)

Social & Peer Support: Research re: Internet

• Lowers social isolation & depression: – Small RCT--Internet access & training w/ older adults; trends only support (Burgstahler & Cronheim, 2001) to-face friendships (White et al, 2002) – Breast cancer—medical info & online (Fogel et al, 2002; Owen et al, 2004) – Youth w/ disabilities—online support group • Increases communication: – 11-yr cohort study of patients w/ locked-in syndrome—family/friends (Doble et al, 2003) – Population-based—email, etc. increased telephone use, social interaction, & face (Katz et al, 2001)

Online Counseling/Therapy

• Psychological interventions show improved outcomes in non-disabled: – Hazardous drinking in students, double blind RCT (N=104) (Kypri et al, 2004) – Complicated grief randomized waitlist control trial (N=55) entries – ex) (Wagner et al, 2006) • Large treatment effect: intrusion, avoidance, maladaptive behavior, & general psychopathology—maintained @ 3 mos • “Online Therapy” in PsycINFO = 262 Online Therapy: A Therapist’s Guide to Expanding Your Practice (Todd, 2006)

Social & Peer Support: Qualitative Research

• NERSCIC study, aka “MSN TV Study” – First-time home Internet access to 26 ppl w/ SCI • “Being able to connect with people, learn through people, make friends. The Web allows me to trust other people more without having to see them… Communication, understanding people better. I share more than through other forms [of communication]. I share intimacy, share problems and losses…It helps unload frustration. I’m frustrated with the scars on my face due to the accident.”

Social & Peer Support: Website Examples

Care Cure Community http://sci.rutgers.edu • Over 70 forums: "In general, I love the CareCure forum, I could spend hours on it.“; "I like…to see if anyone else has info that may be helpful." • SCI Care - Ask SCI Nurses questions in: Care Forum, New SCI Forum, Relationships and Sexuality Forum, Transverse Myelitis & Atraumatic SCI, etc. Also see Caregiving, Equipment, Personals, & Exercise Forums. • SCI Cure – Restorative therapies. The Cure Forum contains comprehensive, up-to-date news on curing SCI. The Research Forums lists abstracts of the latest scientific articles. Exchange info re: Clinical Trials, Equipment & Services, Doctors & Clinics.

Social & Peer Support: Website Ex. (Cont’d)

SCI Info Pages www.sci-info-pages.com

• See “Disability Communities” & “Message Boards & Newsgroups” • Created by C5/6 quadriplegic; a best-of-the-web collection of articles and links for SCI injury health info that is regularly updated. • Newly injured individuals will find the SCI Health Issues and General SCI Issues sections most useful: "This is a good site for the newly injured because it answers nearly every question they could have. The links were not too medically oriented..." • Also: news section on SCI current events, links to personal web pages, and a section on financial and legal issues.

Social & Peer Support: Other Sites

• National SCI Association www.spinalcord.org



click on “Forum” on top horizontal bar • Makoa.org: Created and maintained by Jim Lubin, a C2 quadriplegic http://www.makoa.org/sci.htm



scroll to click on “Bulletin Boards/Chat” & “Email List Groups”

Education&Empowerment: Applications

• SCI P/SW can empower pwd through training re: online info & resources otherwise hard to attain due to marginalized status (Vesmarovich, 2000) • Ex: OT trained African American community residents to use Internet to obtain health info; provided ongoing TA – significantly increased health-related empowerment (Suarez-Balcazar, 2005) • Other applications: Medical info, self care, advocacy, disease management

Patient Education: Research

• Nearly all lit. w/ positive results • Critical review of acceptability and usefulness of computerized interventions for pwd (Krishna et al, 1997) – All diabetes: lowered blood glucose • Inpatient breast cancer study w/ controls (N=162) (Lampe, 2004) – Int grp: more home Internet use, helped • Independent skin care promotion for adults with paraplegia—across subjects design (Pellerito, 2003)

Patient Empowerment: MSN TV Study

• “The more I look, the more I find. The more I find, the more I learn. The more I learn, the “more better” my life becomes…I have found many sites which send e-mail newsletter updates which I further review, sort them out, and discard and select. Then I put them to use.” • “I have more to look forward to, it makes me happier. It’s something different, more than just the same old grind. I’ve gotten more interested in what’s going on.”

Education&Empowerment: Website Examples

• UAB SPINAL CORD INJURY INFORMATION NETWORK: Fact Sheets http://www.spinalcord.uab.edu/show.as

p?durki=21479 "This site offers pamphlets on a great many subjects through a clean, simple layout. All the pamphlets are quite comprehensive.” "These pamphlets are well written and cover highly relevant issues plus many have links that include further information and suggested readings."

Education&Empowerment: Website Ex. (Cont’d)

• Christopher Reeve Foundation www.christopherreeve.org

– Research--click on "General Interest” – For SCI-specific info, the Paralysis Resource Center: w/ website links in all areas of living; email & toll-free hotline for resource referral; & the New Paralysis Resource Kit (link at top of page) – Advocacy--start with the Action Network & Action Tools (see "A Handbook for Advocates")

• www.craighospital.org and click on Spinal Cord Injury and Educational Brochures) • NSCIA: Fact Sheets www.spinalcord.org/html/factsheets/ "The fact that this site is so frequently referenced by other sites makes it worth listing simply because it is better to go straight to the source." “… very comprehensive.” • http://www.sci-info pages.com/orgs.html

Access to Resources: Applications

• Housing • Transportation • Vocational training • Online schooling • Community accessibility • Assistive Technology and ECUs • Benefits • Much more!

Access to Resources: Research

• Computers & Internet have become necessary tools in the workplace; allows for telework; better outcomes (Wallace, 2004; Harpaz, 2005) (Bricout, 2004)(Pell et al, 1997) • Expert Consensus • Cyber environment makes resources & services readily available & accessible to pwd (Vesmarovich et al, 2000) • Use of Internet in Rehab (Patterson, 2002)

Access to Resources: MSN TV Study

• “Whenever I need something I’m not sure of, it’s right there…It’s just opened up doors…It’s opened my eyes…to things and places I couldn’t have seen before.”

Access to Resources: Website Examples

Housing • Infinitec: Home Modifications www.infinitec.org/live/homemodifications/housi ngresources.htm – Comprehensive, user-friendly, practical look at housing modifications – "Awesome info. I wish I found this website years ago. It is so extensive.” • The National Accessible Clearing House Website www.forrent.com/naac/naac.html

– Searchable database of accessible US housing; not comprehensive (very few listings in: NH, ND, ID, MT, WY, AK, HI, DE)

Access to Resources: Website Ex. (Cont’d)

Assistive Technology • www.GiveTech.org provides AT free of charge • For used AT sites, see www.bu.edu/sciguide (COMING SOON)

Access To Resources: Other Websites

• www.govbenefits.gov for benefits assistance • www.christopherreeve.org & go to the Paralysis Resource Center • www.spinalcord.org NSCIA has a resource listing • www.spinalcord.uab.edu UAB has everything!

• www.makoa.org/sci • www.sci-info-pages.com

Life Management: Applications

• Banking • Bill management & paying • Shopping • Travel • Order food for delivery • Rent movies for delivery • Yellow/white pages • Entertainment • Much more!

Life Management: MSN TV Study

• “Anything that I’m interested in, I can look up…I don’t get all stressed out. It’s not easy for a quadriplegic to flip through the Yellow Pages, so using the [Internet] is easier.” • “It’s a wonderful pastime. It actually distracts my mind off some of my discomfort. I don’t want medication, I’d rather be distracted. I have spinal cord pain, [the Internet] gets myself out of myself.”

Life Management: Website Examples

Disability-Specific Travel • www.makoa.org/travel.htm Listing of links for accessible travel info • www.sath.org Society for Accessible Travel and Hospitality • www.innseekers.com Search for wheelchair accessible B&Bs • www.access-able.com Destinations, travel professionals, cruise ships, etc.

• www.abletogo.com Interactive search for hotels, etc. listed by specific needs

Life Management: Website Ex. (Cont’d)

Entertainment • New Mobility Magazine www.newmobility.com – New Mobility is an online, disability culture and lifestyle magazine. – "Interesting that it is such a broad based magazine on everything about scis, cure, driving, employment, and leisure." "Easy to navigate and fun!"

Life Management: Other Examples

• Rent movies: www.netflix.com • Yellow/white pages: www.theultimates.com • Grocery Delivery: www.peapod.com or www.netgrocer.com • Consumer Reviews: www.consumersearch.com ; www.edmunds.com for cars

Gaining Access to the Computer & Internet

• For low-income patients, look for grants at: www.fundsnetservices.com; http://fundingopps.cos.com; & http://fdncenter.org



“Searchzone”) • The Cristina Foundation (www.cristina.org) has community partners that distribute free refurbished computers for consumers • Look for local resources (libraries, computer centers for disabled) – Alliance for Technology Access www.ataccess.org

NERSCIC Internet Projects

• Pilot MSN TV* Study – Houlihan et al (2003) • National SCI Technology Survey – Drainoni, Houlihan, et al (2004) • The SCI Guide Online • Internet Access Group Project *Copyright: Microsoft Corporation

The SCI Guide: www.bu.edu/sciguide

• Goal: to connect users with SCI to quality peer-reviewed resources on the Internet, esp. newly injured and technophobes • Consumers evaluate Internet resources • Develop disability-specific rating system for websites • Create a comprehensive, analytical guide for the SCI community that is user-friendly and self perpetuating

Internet Access Group Project

• Provide Internet training to newly injured patients with SCI during initial acute rehabilitation stay • Provide free Internet access in patient’s home post-discharge • Evaluate satisfaction and physical and emotional health— in process

Future Directions for Research

• More focused intervention studies, w/ ppl w/ SCI in rehab settings, for evidence-based practice • Need to develop standards for online counseling, peer support groups, peer mentoring, etc.

• Need curriculum, guides, & other products to assist consumers in using the Internet

A Warning on the Future of the Digital Divide

“Engrained disablist attitudes and continued physical barriers may all serve to limit the potential benefits of new technology. Indeed the increasingly globalised and disciplined nature of contemporary life, coupled with the rapid pace of technological change could lead to further social exclusion rather than less for disabled people.” (Roulstone 2003)

Empowering Patients into the Future

• “The medical & health care communities should establish approaches that empower consumers to use the Internet as part of a total health care strategy, rather than simply warn them about Internet hazards. The statuses of social workers, health educators, & related health professionals may be bolstered as they develop ways to empower & support consumers' Internet utilization.” (Oravec, 2001)

Contact Information

Bethlyn Houlihan, MSW, MPH Senior Project Manager Room F511 (617) 638-7380 [email protected]