Steve Goldberg President and CEO iNET International Inc

1. An Evolution Of Using Social Networks For Data Collection: A Healthcare Perspective Steve GoldbergPresident and CEOiNET International Inc

2. about INET • Founded in 1998 as an Information and Communication Technology (ICT) Consulting firm. • INET Online Data Collection Practice: programming and hosting, online sample, and translation services for international studies. • INET Wireless Diabetes Practice: supporting the implementation of chronic disease management. • Research collaboration with CMMT at IIT Chicago with a focus on ways to best apply ICT use in Healthcare

3. program and host online surveys& provision online samplesolutions Online Data Collection where INET fits? Client’s Business Outcomes Quantitative Market Research Studies Methodology Study Design Data Collection Tabulation and Coding Analysis Presentation

4. Today’s Talk • Using Social Networks For Data Collection • Need For Online Communities: A Healthcare Case Study • Moving Toward An Online Community To Support Diabetes Self-Care

5. Evolution Of Social Networks For Online Data Collection PassiveParticipation ActiveParticipation Learning & Motivating Change Online Panels Social Networks Online Communities Fast and Highly Responsive Extremely Low Cost Rigorous Data Quality Measures

7. Two Way Communication Social Networks 2006 - Dion Hincliffe : Web 1.0 vs Web 2.0

8. Social Network: Facebook

9. Social Networking& Softwares

10. Top 10 Social Networks Unique Audience: Individuals who have visited a Web site (or network) at least once in a fixed time frame, typically a 30 day period.

11. Age Demographics

12. Cultural Integration

13. Fielding Studies Using Social Networks • Consumer Studies:Peanut Lab has: • Assess to Facebook which has 140 million users and 70% are outside the US. and 80 other social network (web) sites, • 27 million visitors/month • Response rate of 29%. • Peanut Labs was created 14 months ago, has annualised turnover of $10m - Sept 29 2008 • B2B Studies:LinkedIn new entry into B2B sample solution with over 150 industries and 30 million professionals (50% are IT and business decision makers.) October 2008 • Healthcare Studies:Sermo - over 60,000 physicians and is growing between 1,000 to 2,000 physicians per week. Physicians can post observations and questions through the use of internet connections, blogs, instant messaging and other Web 2.0 applications. April 2008

14. Virtual Currency & Data Collection Business Model

15. 3 Qualified fluff owners have an option to take a survey for “munny” 1 A fluff owner community represents ~160,000 daily active users (3% of the daily facebook users) 2 An owner needs “munny” to care and feed their fluff, buy gifts and do lots of fun activities. Mechanics Of A Virtual Incentive Access Generation Y = facebook + virtual incentive = 29% Response Rate

16. A Framework for Data Quality Social Network Sample = digital fingerprint + validation measures= quality data Social Networks recruit fully opted-in respondents Online Community 1 …. Online Community n OnlineCommunity .... Profile Database n Profile Database 1 pre-survey: digital fingerprint OnlineCommunity OnlineCommunity one-off (i.e. cookies) ongoing (i.e. pattern) identify duplicate, heavy or professional user post-survey: validation measures speeders, straight-liners, zig-zagers, knowledge / security question failures, OE legibility, screen scrapers, and geo IP variances

17. Integrate Quant-QualTools Online Surveys Employ Graphical User Interfaces (GUI) and Messaging A cluster analyses summary report

18. Online Sample: Mix of Old And New INET sample suppliers = World Wide Online Access to> 400,000 physicians Recruitment Method Country Opt-in Members Social Network US 60,000 +1000/wk UK CA DE FR Pseudo Online Community DE 60,500 US IT UK 57,000 EP JP US KR CN JP 121,000 Online Panel US 145,000 MX IN Telephone to web & back end recruit FR 7,400 CA 9,500 Telephone to web EP BR IT IN AU AU CN Online Sample Augment CATI Back End Data Entry (BEDE) MX BR F2F BEDE KR

19. Evolution Of Social Networks For Online Data Collection PassiveParticipation ActiveParticipation Learning & Motivating Change Online Panels Social Networks Online Communities Fast and Highly Responsive Extremely Low Cost Rigorous Data Quality Measures

20. Need For Online Communities:A Healthcare Case Study • To Become Motivated To Change: Extremely high dissatisfaction levels in healthcare –> survival anxiety. • What Needs To Be Changed: Focus on patients transition from passive participation to an active player in their own care. • To Make The Change Permanent: Improved healthcare outcomes for everyone at a fraction of today's costs.

21. The cost to the U.S. economy of treatment and lost productivity caused by chronic illnesses among U.S. residents is more than $1.3 trillion per year, and if current trends are not reversed, costs could reach $6 trillion by 2050, according to a report released Tuesday by the Milken Institute, the San Francisco Chronicle reports [Oct 03, 2007]

22. Looking At Chronic Disease • In Canada, chronic diseases account for 70% of all deaths, more than 60% of healthcare costs. • Diabetes, depression, congestive heart failure, hepatitis and asthma are examples of chronic diseases. • World wide between 2000 and 2030 the number of people with diabetes may increase from 171 million to 366 million, a 114% increase. • Of those with diabetes in 2030 it is expected that 298 million will be in developing countries.

23. The Worldwide Epidemic:Diabetes Trends www.who.int www.idf Zimmet P. et al Nature: 414, 13 Dec 2001 8th Annual INET Mini-Conference, "A Wireless Diabetes Program: A patient, hospital and primary care collaboration." June 20, 2006 - Keynote: "Diabetes in Canada: Issues and Challenges in Clinical Care" Dr. Stewart B. Harris MD, MPH, FCFP, FACPM

24. Why the Epidemic? • Physical Inactivity • 60% to 85% of adults are not active enough to maintain their health • Diet • Calorie dense; high fat • Aging population • Urbanization • Shift from an agricultural to an urban lifestyle means a decrease in physical activity 8th Annual INET Mini-Conference, "A Wireless Diabetes Program: A patient, hospital and primary care collaboration." June 20, 2006 - Keynote: "Diabetes in Canada: Issues and Challenges in Clinical Care" Dr. Stewart B. Harris MD, MPH, FCFP, FACPM

25. Portion Size: 1950s to 2000 8th Annual INET Mini-Conference, "A Wireless Diabetes Program: A patient, hospital and primary care collaboration." June 20, 2006 - Keynote: "Diabetes in Canada: Issues and Challenges in Clinical Care" Dr. Stewart B. Harris MD, MPH, FCFP, FACPM

26. “Each System is Perfectly Designed to get the Results it Achieves.We designed our health system to manage acute illnesses, not manage (much less prevent) chronic ones.” Michael M. Rachlis MD MSc FRCPC 9th Annual INET Mini-Conference, "Telehealth: Support Diabetes Self-Care." June 20, 2007, Keynote: "How do we Re-tool Ontario’s Health Care System for Chronic Disease Management and Prevention?" Dr. Michael M. Rachlis, MD, MSc, FRCPC

27. Transitioning to Self-Care

28. Empower and Prepare Patients to Manage Their Health and Healthcare Self Management Support • Programs emphasize the patient's role in managing the illness. • Educational resources increase patient knowledge, confidence, and skills. • Patients are assisted in setting personal goals and are given a variety of other aids to assist in changing behavior. • Mechanisms for patient peer support are accessible and the patient has access to behavior change programs. • Measurement methods and feedback are provided to patients. • Patients are assisted in improving communication with providers about their health care. http://www.doh.wa.gov/cfh/WSC/Model_Info/self_management_support/default.htm

29. Knowledge-based Systems Development Model Center for the Management of Medical Technology (CMMT) & Improved healthcare outcomes for everyone at a fraction of today's costs • Enable people to achieve their self management support goals. • Minimize risk by implementing new processes in small manageable bite size pieces. • Offer the lowest cost (ICT) solution by leverage existing systems and use pervasive technologies: • Internet • Cell phones • Social Networks: Facebook, Linkedin • Keep it very simple

30. Using Cell-Phones To Facilitate Diabetes Self-Care Sheldon Silver MDFamily Practice Staff Physician Credit Valley Hospital

31. HA1C Glycosylated hemoglobin

32. †Lower extremity amputation or fatal peripheral vascular disease *P = 0.035; **P < 0.0001 UKPDS: decreased risk of diabetes-related complications associated with a 1% decrease in A1C Observational analysis from UKPDS study data Any diabetes- related endpoint Diabetes- related death All cause mortality Peripheral vascular disease† Micro- vascular disease Myocardial infarction Cataract extraction Stroke Percentage decrease in relative risk corresponding to a 1% decrease in A1C 12% 14% 14% * 19% ** 21% 21% ** ** ** ** 37% 43% ** ** Adapted from Stratton IM, et al. UKPDS 35. BMJ 2000; 321:405–412.

33. Wireless Diabetes Management Protocol • Patient’s phone is loaded with a program & ID# • Enter blood sugar readings. • The data is sent back electronically and wirelessly to their MD; • Data consists of only an ID# and blood sugar as well as date and time of reading • No identifying data; privacy is protected; • Avoids hoarding of data. • MDs/RNs monitor data on SmartPhone / PC • Action plan sent back to patient. • Excellent MD/RN – patient relationship • Community team approach with DCC & CCAC

34. Supporting Diabetes Self Care Prevent Diabetes Related Complications with Better Control of Glycemic Levels, Measured by HA1C People w/Diabetes Action Request i.e. ”Keep up the good work” Healthcare Team Enter Sugar Level Diabetes Management System (Bayer WinGlucofacts & INET Sync) Receive Sugar Levels Send Action Request GlycemiCare Server Patient Privacy: No identifiable information is transmitted.

35. Pilot Project: Diabetes Care Centre, Credit Valley Hospital (CVH) • Pilot was support with an Education Grant Funded by Bayer Diabetes Care Division • Pilot started in 2006 with approval from CVH Ethics Review Broad. • 25 patients enrolled and 20 completed. • 15 patients participated > 3 months, 7 patients => 5 months. • 20 patients submitted both pre and post HA1C. • 18 patients reduced HAIC and 1 patient maintained good control

36. Patient Feedback

37. Empower and Prepare Patients to Manage Their Health and Healthcare Self Management Support • Programs emphasize the patient's role in managing the illness. • Educational resources increase patient knowledge, confidence, and skills. • Patients are assisted in setting personal goals and are given a variety of other aids to assist in changing behavior. • Mechanisms for patient peer support are accessible and the patient has access to behavior change programs. • Measurement methods and feedback are provided to patients. • Patients are assisted in improving communication with providers about their health care. http://www.doh.wa.gov/cfh/WSC/Model_Info/self_management_support/default.htm

38. Empower and Prepare Patients to Manage Their Health and Healthcare Self Management Support • Programs emphasize the patient's role in managing the illness. • Educational resources increase patient knowledge, confidence, and skills. • Patients are assisted in setting personal goals and are given a variety of other aids to assist in changing behavior. • Mechanisms for patient peer support are accessible and the patient has access to behavior change programs. • Measurement methods and feedback are provided to patients. • Patients are assisted in improving communication with providers about their health care. NEXT Step http://www.doh.wa.gov/cfh/WSC/Model_Info/self_management_support/default.htm

39. People Looking To Educate Themselves For Self-Care

40. Online Communities:How groups are remarkablyintelligent showing how shared observation and their members collective wisdom can produce some astonishingclinical insights.

41. A culture of learning and motivating change

43. Supporting Diabetes Self Care Prevent Diabetes Related Complications with Better Control of Glycemic Levels, Measured by HA1C People w/Diabetes Healthcare Team Action Request i.e. ”Keep up the good work” Enter Sugar Level Diabetes Management System (Bayer WinGlucofacts & INET Sync) Receive Sugar Levels Send Action Request GlycemiCare Server Patient Privacy: No identifiable information is transmitted. Moving Toward An Online Community To Support Diabetes Self-Care Virtual Currency & Online Data Collection Business Model

44. Evolution Of Social Networks For Online Data Collection WIP: Transition Research Methods Today: Online Data Collection Future: Build Online Communities PassiveParticipation ActiveParticipation Learning & Motivating Change Online Panels Social Networks Online Communities Fast and Highly Responsive Extremely Low Cost Rigorous Data Quality Measures

45. THANK YOU!