1. 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

2. 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.

3. Introduction: Why the Internet? Internet impacts every aspect of modern global societyInternet 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 & resourcesPwd increasingly using Internet for health info & resources –Safety concerns: predators & misinformation Application to broad range of patient interventions & outcomesApplication to broad range of patient interventions & outcomes

4. The Digital Divide for People with Disabilities Disability status = race / ethnicityDisability status = race / ethnicity Pwd owning computer: 24% vs. 52%Pwd owning computer: 24% vs. 52% (Kaye, 2000) ~25% - 50% less likely to have home Internet access (ibid; Dpt of Commerce, 2001)~25% - 50% less likely to have home Internet access (ibid; Dpt of Commerce, 2001) Range: 10% to 65% use the InternetRange: 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)Divide is lessening, but of greater magnitude for those without (Katz, 2001; Roulstone, 2003)

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

6. Barriers to Internet Access for Ppl w/ SCI Other observed barriers:Other observed barriers: –Adaptive equipment Assessment needed, product testing, expenseAssessment needed, product testing, expense –Inexperience w/ computers &/or Internet –More “active” personality type Research demonstrating thisResearch demonstrating this –Lack of awareness of available resources & services online

7. Primary Uses of Internet NERSCIC, 2006 NCDDR Survey, 2000 Kaye, 2000 Type of Use SCIPwdPwd Gen Pop Info Search 65%* 65%* 58% 58% 63% 63% 64% 64% Email59526775 Shopping43161723 Disability/ Health Info 40 38* 38*---- Entertainmen t 28* 28*3139*45* Job Search 25181617 School--102935

8. 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 onlineIn 2002, 80% of US adults sought health info &/or services online Only ~10% e-mailed w/ providers, purchased supplies online, managed a chronic disease onlineOnly ~10% e-mailed w/ providers, purchased supplies online, managed a chronic disease online > 50% want to use Internet for clinical purposes > 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 disapprovalMajor barriers: potential threats to privacy, inaccuracy of info, problems in evaluating the quality of online info & services, & physician disapproval

9. Relevant Internet Applications Social & peer supportSocial & peer support Patient education & empowermentPatient education & empowerment Access to resourcesAccess to resources Life managementLife management

10. Social & Peer Support: Internet Applications EmailEmail Chat roomsChat rooms Message BoardsMessage Boards Dating & friend matching sitesDating & friend matching sites Online support groupsOnline support groups Online peer supportOnline peer support Online counseling/therapyOnline counseling/therapy Rehab group processing (NERSCIC)Rehab group processing (NERSCIC)

11. Social & Peer Support: Research re: Internet Lowers social isolation & depression:Lowers social isolation & depression: –Small RCT--Internet access & training w/ older adults; trends only (White et al, 2002) –Breast cancer—medical info & online support (Fogel et al, 2002; Owen et al, 2004) –Youth w/ disabilities—online support group (Burgstahler & Cronheim, 2001) Increases communication: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- to-face friendships (Katz et al, 2001)

12. Online Counseling/Therapy Psychological interventions show improved outcomes in non-disabled: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) (Wagner et al, 2006) Large treatment effect: intrusion, avoidance, maladaptive behavior, & general psychopathology—maintained @ 3 mosLarge treatment effect: intrusion, avoidance, maladaptive behavior, & general psychopathology—maintained @ 3 mos “Online Therapy” in PsycINFO = 262 entries“Online Therapy” in PsycINFO = 262 entries –ex) Online Therapy: A Therapist’s Guide to Expanding Your Practice (Todd, 2006)

13. Social & Peer Support: Qualitative Research NERSCIC study, aka “MSN TV Study”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.”“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.”

14. 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."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 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.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.

15. Social & Peer Support: Website Ex. (Cont’d) SCI Info Pages www.sci-info-pages.com See “Disability Communities” & “Message Boards & Newsgroups”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.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..."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.Also: news section on SCI current events, links to personal web pages, and a section on financial and legal issues.

16. Social & Peer Support: Other Sites National SCI AssociationNational SCI Association www.spinalcord.org  click on “Forum” on top horizontal bar www.spinalcord.org  click on “Forum” on top horizontal bar Makoa.org: Created and maintained by Jim Lubin, a C2 quadriplegicMakoa.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” http://www.makoa.org/sci.htm  scroll to click on “Bulletin Boards/Chat” & “Email List Groups”

17. 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)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 TAEx: 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 managementOther applications: Medical info, self- care, advocacy, disease management

18. Patient Education: Research Nearly all lit. w/ positive resultsNearly all lit. w/ positive results Critical review of acceptability and usefulness of computerized interventions for pwd (Krishna et al, 1997)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)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)Independent skin care promotion for adults with paraplegia—across- subjects design (Pellerito, 2003)

19. 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.”“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.”“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.”

20. Education&Empowerment: Website Examples UAB SPINAL CORD INJURY INFORMATION NETWORK: Fact SheetsUAB 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."

21. Education&Empowerment: Website Ex. (Cont’d) Christopher Reeve FoundationChristopher Reeve Foundation www.christopherreeve.org 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")

22. www.craighospital.org and click on Spinal Cord Injury and Educational Brochures)www.craighospital.org and click on Spinal Cord Injury and Educational Brochures) NSCIA: Fact SheetsNSCIA: Fact Sheetswww.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.htmlhttp://www.sci-info- pages.com/orgs.html

23. Access to Resources: Applications HousingHousing TransportationTransportation Vocational trainingVocational training Online schoolingOnline schooling Community accessibilityCommunity accessibility Assistive Technology and ECUsAssistive Technology and ECUs BenefitsBenefits Much more!Much more!

24. 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)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 ConsensusExpert Consensus Cyber environment makes resources & services readily available & accessible to pwd (Vesmarovich et al, 2000)Cyber environment makes resources & services readily available & accessible to pwd (Vesmarovich et al, 2000) Use of Internet in Rehab (Patterson, 2002)Use of Internet in Rehab (Patterson, 2002)

25. 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.”“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.”

26. Access to Resources: Website Examples Housing Infinitec: Home ModificationsInfinitec: Home Modifications www.infinitec.org/live/homemodifications/hous ingresources.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 WebsiteThe National Accessible Clearing House Website www.forrent.com/naac/naac.html 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)

27. Access to Resources: Website Ex. (Cont’d) Assistive Technology www.GiveTech.org provides AT free of chargewww.GiveTech.org provides AT free of charge For used AT sites, see www.bu.edu/sciguideFor used AT sites, see www.bu.edu/sciguide (COMING SOON)

28. Access To Resources: Other Websites www.govbenefits.gov for benefits assistancewww.govbenefits.gov for benefits assistance www.christopherreeve.org & go to the Paralysis Resource Centerwww.christopherreeve.org & go to the Paralysis Resource Center www.spinalcord.org NSCIA has a resource listingwww.spinalcord.org NSCIA has a resource listing www.spinalcord.uab.edu UAB has everything!www.spinalcord.uab.edu UAB has everything! www.makoa.org/sciwww.makoa.org/sci www.sci-info-pages.comwww.sci-info-pages.com

29. Life Management: Applications BankingBanking Bill management & payingBill management & paying ShoppingShopping TravelTravel Order food for deliveryOrder food for delivery Rent movies for deliveryRent movies for delivery Yellow/white pagesYellow/white pages EntertainmentEntertainment Much more!Much more!

30. 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.”“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.”“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.”

31. Life Management: Website Examples Disability-Specific Travel www.makoa.org/travel.htm Listing of links for accessible travel infowww.makoa.org/travel.htm Listing of links for accessible travel info www.sath.org Society for Accessible Travel and Hospitalitywww.sath.org Society for Accessible Travel and Hospitality www.innseekers.com Search for wheelchair accessible B&Bswww.innseekers.com Search for wheelchair accessible B&Bs www.access-able.com Destinations, travel professionals, cruise ships, etc.www.access-able.com Destinations, travel professionals, cruise ships, etc. www.abletogo.com Interactive search for hotels, etc. listed by specific needswww.abletogo.com Interactive search for hotels, etc. listed by specific needs

32. Life Management: Website Ex. (Cont’d) Entertainment New Mobility MagazineNew Mobility Magazine www.newmobility.com 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!"

33. Life Management: Other Examples Rent movies: www.netflix.comRent movies: www.netflix.com Yellow/white pages: www.theultimates.comYellow/white pages: www.theultimates.com Grocery Delivery: www.peapod.com or www.netgrocer.comGrocery Delivery: www.peapod.com or www.netgrocer.com Consumer Reviews:Consumer Reviews: www.consumersearch.com ; www.consumersearch.com ; www.edmunds.com for cars www.edmunds.com for cars

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

35. NERSCIC Internet Projects Pilot MSN TV* StudyPilot MSN TV* Study –Houlihan et al (2003) National SCI Technology SurveyNational SCI Technology Survey –Drainoni, Houlihan, et al (2004) The SCI Guide OnlineThe SCI Guide Online Internet Access Group ProjectInternet Access Group Project *Copyright: Microsoft Corporation

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

37. Internet Access Group Project Provide Internet training to newly injured patients with SCI during initial acute rehabilitation stayProvide Internet training to newly injured patients with SCI during initial acute rehabilitation stay Provide free Internet access in patient’s home post-dischargeProvide free Internet access in patient’s home post-discharge Evaluate satisfaction and physical and emotional health— in processEvaluate satisfaction and physical and emotional health— in process

38. Future Directions for Research More focused intervention studies, w/ ppl w/ SCI in rehab settings, for evidence-based practiceMore 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 to develop standards for online counseling, peer support groups, peer mentoring, etc. Need curriculum, guides, & other products to assist consumers in using the InternetNeed curriculum, guides, & other products to assist consumers in using the Internet

39. 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) (Roulstone 2003)

40. 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)“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)

41. Contact Information Bethlyn Houlihan, MSW, MPH Senior Project Manager Room F511 (617) 638-7380 Bethlyn.Houlihan@bmc.org