1. GLC - MRA Conference January 21-23 2009 An Evolution Of Using Social Networks For Data Collection: A Healthcare Perspective Steve Goldberg President and CEO iNET International Inc

2. GLC - MRA Conference January 21-23 2009 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. GLC - MRA Conference January 21-23 2009 where INET fits? Client’s Business Outcomes Methodology Study Design Data Collection Tabulation and Coding Analysis Presentation Online Data Collection program and host online surveys & provision online sample solutions Quantitative Market Research Studies

4. GLC - MRA Conference January 21-23 2009 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. GLC - MRA Conference January 21-23 2009 Evolution Of Social Networks For Online Data Collection Online Communities Social Networks Online Panels Fast and Highly Responsive Extremely Low Cost Rigorous Data Quality Measures Learning & Motivating Change Learning & Motivating Change Passive Participation Active Participation

6. GLC - MRA Conference January 21-23 2009

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

8. GLC - MRA Conference January 21-23 2009 Social Network: Facebook

9. GLC - MRA Conference January 21-23 2009 Social Networking & Softwares

10. GLC - MRA Conference January 21-23 2009 Unique Audience: Individuals who have visited a Web site (or network) at least once in a fixed time frame, typically a 30 day period. Top 10 Social Networks

11. GLC - MRA Conference January 21-23 2009 Age Demographics

12. GLC - MRA Conference January 21-23 2009 Cultural Integration

13. GLC - MRA Conference January 21-23 2009 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. GLC - MRA Conference January 21-23 2009 Virtual Currency & Data Collection Business Model

15. GLC - MRA Conference January 21-23 2009 Mechanics Of A Virtual Incentive Access Generation Y = facebook + virtual incentive = 29% Response Rate Qualified fluff owners have an option to take a survey for “munny” An owner needs “munny” to care and feed their fluff, buy gifts and do lots of fun activities. 2 3 A fluff owner community represents ~160,000 daily active users (3% of the daily facebook users) 1

16. GLC - MRA Conference January 21-23 2009 A Framework for Data Quality Social Network Sample = digital fingerprint + validation measures = quality data Social Networks Online Community recruit fully opted-in respondents Profile Database n Profile Database 1 pre-survey: digital fingerprint one-off (i.e. cookies)ongoing (i.e. pattern) post-survey: validation measures speeders, straight-liners, zig-zagers, knowledge / security question failures, OE legibility, screen scrapers, and geo IP variances identify duplicate, heavy or professional user Online Community nOnline Community 1 ….....

17. GLC - MRA Conference January 21-23 2009 Online Surveys Employ Graphical User Interfaces (GUI) and Messaging A cluster analyses summary report Integrate Quant-Qual Tools

18. GLC - MRA Conference January 21-23 2009 US IN MX BR KR EP IT AU CN JP CA INET sample suppliers = World Wide Online Access to > 400,000 physicians Online Sample: Mix of Old And New US Opt-in Members CountryRecruitment Method 60,000 +1000/wk US Social Network BR CN AU IN IT EP Telephone to web MXCATI Back End Data Entry (BEDE) 9,500CA Telephone to web & back end recruit 7,400FR F2F BEDE 145,000US Pseudo Online Community 121,000JP 60,500DE 57,000UK KR Online Panel Online Sample Augment FR UK DE

19. GLC - MRA Conference January 21-23 2009 Evolution Of Social Networks For Online Data Collection Online Communities Social Networks Online Panels Fast and Highly Responsive Extremely Low Cost Rigorous Data Quality Measures Learning & Motivating Change Learning & Motivating Change Passive Participation Active Participation

20. GLC - MRA Conference January 21-23 2009 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. GLC - MRA Conference January 21-23 2009 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. GLC - MRA Conference January 21-23 2009 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. GLC - MRA Conference January 21-23 2009 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. GLC - MRA Conference January 21-23 2009 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. GLC - MRA Conference January 21-23 2009 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. GLC - MRA Conference January 21-23 2009 “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 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. GLC - MRA Conference January 21-23 2009 Transitioning to Self-Care

28. GLC - MRA Conference January 21-23 2009 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. GLC - MRA Conference January 21-23 2009 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 & Knowledge-based Systems Development Model Center for the Management of Medical Technology (CMMT)

30. GLC - MRA Conference January 21-23 2009 Sheldon Silver MD Family Practice Staff Physician Credit Valley Hospital Using Cell-Phones To Facilitate Diabetes Self-Care

31. GLC - MRA Conference January 21-23 2009 H A1C Glycosylated hemoglobin

32. GLC - MRA Conference January 21-23 2009 Adapted from Stratton IM, et al. UKPDS 35. BMJ 2000; 321:405–412. UKPDS: decreased risk of diabetes-related complications associated with a 1% decrease in A1C Percentage decrease in relative risk corresponding to a 1% decrease in A1C ** Any diabetes- related endpoint 21% ** Diabetes- related death 21%** All cause mortality 14% * Stroke 12% ** Peripheral vascular disease † 43% ** Myocardial infarction 14% ** Micro- vascular disease 37% ** Cataract extraction 19% Observational analysis from UKPDS study data † Lower extremity amputation or fatal peripheral vascular disease *P = 0.035; **P < 0.0001

33. GLC - MRA Conference January 21-23 2009 Wireless Diabetes Management Protocol 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. GLC - MRA Conference January 21-23 2009 Action Request i.e. ”Keep up the good work” Diabetes Management System (Bayer WinGlucofacts & INET Sync) Healthcare Team Patient Privacy: No identifiable information is transmitted. People w/Diabetes Supporting Diabetes Self Care Receive Sugar Levels Send Action Request Enter Sugar Level GlycemiCare Server Prevent Diabetes Related Complications with Better Control of Glycemic Levels, Measured by HA1C

35. GLC - MRA Conference January 21-23 2009 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. GLC - MRA Conference January 21-23 2009 Patient Feedback

37. GLC - MRA Conference January 21-23 2009 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. GLC - MRA Conference January 21-23 2009 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 NEXT Step

39. GLC - MRA Conference January 21-23 2009 People Looking To Educate Themselves For Self-Care

40. GLC - MRA Conference January 21-23 2009 Online Communities: How groups are remarkably intelligent showing how shared observation and their members collective wisdom can produce some astonishing clinical insights.

41. GLC - MRA Conference January 21-23 2009 A culture of learning and motivating change

42. GLC - MRA Conference January 21-23 2009

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

44. GLC - MRA Conference January 21-23 2009 Evolution Of Social Networks For Online Data Collection Online Communities Social Networks Online Panels Fast and Highly Responsive Extremely Low Cost Rigorous Data Quality Measures Learning & Motivating Change Learning & Motivating Change Passive Participation Active Participation WIP: Transition Research Methods Future: Build Online Communities Today: Online Data Collection

45. GLC - MRA Conference January 21-23 2009 THANK YOU!