David H. Gustafson Ph.D. Center for Health Systems Research and Analysis Professor of Industrial Engineering and Prevent

1. The Promise & Pitfalls of Internet Health Can we; should we close the digital divide? David H. Gustafson Ph.D. Center for Health Systems Research and Analysis Professor of Industrial Engineering and Preventive Medicine University of Wisconsin-Madison

2. Technology Trends & Future IHC Applications • Affordable, portable computers • Internet/Web: public access to info/support • Cyber cafes • Cell phones “everywhere” • “Agents” anticipate based on prior usage • Hand held cellular increase capabilities

3. The Future • The virtual health system • Minimizing bricks and mortar • Minimizing inventory • Invisible partnerships across the world (e.g. telemedicine). • Visits will be a rare event!

5. Benefits of IHCs in Health • Improved access to health info • Anonymity • Tailoring • Social support • Immediate updating • Access to world wide resources

6. The Risks of IHCs in Health • Privacy • Un-representative • Poor quality info (intentional or not) • Uninvited guests • Risk to patient/provider relationship • Gap between haves and have-nots will increase

7. Self-care is most common Doctors, etc Self Care

8. IHCS will make self-care more common and effective Doctors, etc Self Care

9. It all starts with needs assessments

12. Terminal cancer diagnosis During treatment Prior to visits with doctor Treatments stop working Cancer pain begins Marriage problems arise Roles must change Need help w functions Need help with ADLs Mental status changes Breathing is limited Death surround Bereavement Starting a new life Needs change with key events

13. Focus of IHCS • Behavior change • Coping • Disease management • Decision making

14. Our CHESS research

15. Research and Consortium Sites

16. Current CHESS Research • Cancer decisions • CHESS vs Internet - BCa • Teen smoking behavior • Medication adherence • Menopause • Adult smoking relapse • Diffusion of innovation • Breast cancer quality of life • Digital divide

17. Breast Cancer AIDS Heart Disease Alcohol abuse Teen Smoking Existing-not active Rape Asthma Menopause Prostate Cancer Dementia Caregivers Being Developed Smoking Cessation Topics covered by CHESS

18. To try CHESS: chess.chsra.wisc.edu/bc code name: guestpassword: scale

19. Research Results

20. Who uses and how • Average 1 use per day for 3 months • Discussion Group used most (43-65%) • Email second (15%) • Live Alone: only predictor of total use. • 48% of uses from 9PM to 7AM. • Under served and elderly use differently

21. Quality of life improves * p<.10

22. CHESS affects health services use. *Benefits only in recently diagnosed HIV pts.

23. Minorities & elderly use it too. 48% between 9PM & 7AM 6.8/wk 5.9/wk 6.2/wk

25. How CHESS may affect outcomes Participation • Quality of Life • Emotional • Functional • Concerns • Social Family CHESS Social Support Information Competence All relationships p<.01

26. Is it information & analysis, or communication? Communication service use HIV patients Qualitative study Changers on: negative emotions, social support, participation, and cognitive function

27. Information & analysis services are key. Communication service use Depth of information & analysis service use (in %) Smaglik et al, “Quality of interactive computer use among HIV infected individuals”, J Hlth Com, 3; pp 53-68.

28. Unguided Internet may not be the answer 560 average minutes: 77% health

29. 80 Subjects* CHESS + Internet 712 average minutes 80% health Internet-only 621 average minutes 30% health * One outlier eliminated in each set CHESS: 13098 min. (12% health) Internet: 12437 min. (39% health)

31. Integrating IHCs with other services:A small ACOA Pilot Just Questions - No conclusions • Just 24 patients (random assignment) • Group Psychotherapy, CHESS, Both • 10 weeks “Results” • Session attendance: 38% vs. 82% with Both • CHESS use: 928 alone vs. 1279 with Both

32. Quality of life changes

33. Digital Divide Project • Assess needs of rural & urban underserved • Change CHESS to remove barriers • CIS telephone & partnership programs recruit • Outcomes • Use of CHESS • Cost of recruitment/operation • Participation, social support, info seeking, • Quality of life • What improvements justify wide dissemination

34. New directions • Merge IHCS with other technologies • Telephone counseling • Telemedicine • Tailored print material • Use push technology-link information to: • Health status • Key events

35. IHCS in Latin America Time to move ahead?

36. Three ways to have IHCS now! Ciber-cafes Cellular phone audio Cellular phone digital image

37. Health Tracking Discussion groups Ask an expert & Instant library Questions/answers & Personal stories Touch tone response Recorded voice Record question & hear response Select from menu & listen Cellular phone audio - Alemi

38. Ciber-cafes • Growing in popularity around the world. • Rent time on computer • Could use CHESS format • Could use a combination of cell phone plus cyber café (communication services on cell phone & information and expert systems at ciber café) OR

39. Possible next steps • Choose topic where users are desperate for help (cancer?) • Do a careful needs assessment • Take an existing program (e.g. CHESS) • Do a literal translation to Spanish (people in crisis worry less about cultural issues) • Add in topics of special need to this group • Test in ciber café or adapt to cell phone

40. Test it • Acceptance as is • Use • Impact on quality of life • Impact on use of health services Stereotypes are likely to be wrong

41. Issues • Potential seems to be great • Be careful of stereotypes • Mechanism: information vs. communication? • IHC in combination with other therapies? • Tailoring: what kind and when? • How take full advantage of technology.

42. End

43. Diabetes self mgt skills Self care Social management skills Save elephants’ camp from rodents Help monitor blood sugar, take insulin, food exchange 24 different experiences 77% drop in urgent care visits Lieberman D www.clickhealth.com 1998 Games can help kids

44. Eating Disorders Weekly requirements Check in Reading assignments CBT exercises Journaling Discuss readings Feedback Also face-to-face Winzelberg et al 2000 J Cons & Clin Psych. 68(2) High intensity programs

45. Message tailoring • Much research on tailored print materials. • Increases mammography use among poor African Americans (Skinner et al 1999) • Tailored birthday cards better than MD in quit smoking (Lipkus et al 1999) • Tailoring combined w other interventions (Rimer, 2000) • Little research on tailoring w IHCs • None with IHCs for people with disease. • But what to tailor on? (Severity? Treatment?)

46. Expected Qualities MD/ED who know asthma Follow clinical guidelines Be seen by a specialist Teach to use peak flow/inhalers Asthma/drug side effects Desired Qualities - How to: Predict impending attack? Assess & explain severity? Know when go to MD or ED Finding/changing to better MD Prevent future attacks Have less severe attacks Unexpected Qualities - How: Deal with denying spouse smoking relative missed holidays naïve schools/teachers myths: e.g. contagious Decide if quit job, move? Know nontraditional Tx Get a good night’s sleep Get clinicians to listen Handle attack in public Influence community action Part of the Total Burden of Asthma