1. Yan(Simon) Gao Max Hernandez-Toso Yimin(Mimi) Jiang Debby Keller Jason Knight Non-Profit Assignment Disease Specific Health Group

2. Nonprofit Disease Specific Health2 Industry Overview The basic value proposition of the websites: –Reliable, comprehensive information about the disease –Resources for treatment, research, and support –Outlets to volunteer & donate to the cause …through an easy-to-use interface. No shareholders in non-profit corporations –Organizations remain viable on the basis of donations

3. Nonprofit Disease Specific Health3 Major Players American Cancer Societywww.cancer.org American Diabetes Foundationwww.diabetes.org American Heart Associationwww.amheart.org American Leukemia Associationwww.leukemia.org March of Dimes (Birth Defects)www.modimes.org Muscular Dystrophy Associationwww.mdausa.org Sickle Cell Association of America www.sicklecelldisease.org

4. Nonprofit Disease Specific Health4 Overview of Pages  Free Health Materials  Online Directory for Medical Resources  Services and Resource Get Involved  Take action  Planed giving and donation  Relay for life General Information  Type of Disease  Prevention and Treatment Options  Research and statistics Patient Services

5. Nonprofit Disease Specific Health5 A Sample Front Page www.americanheart.org

6. Nonprofit Disease Specific Health6 Basics People visit the site for the following INTERESTS: –To look for general or lower level information (patient and their families, general public) –To look for detailed information or higher level information (researchers and health care providers) –To donate money or to check the organizational goals, program and performance (donors and general public) While visiting, perform the following OPERATIONS: –Information search –Donations by credit card or by contacting representatives

7. Nonprofit Disease Specific Health7 Consumers People suffering from the specific disease People with a family member, friend, loved one suffering from the specific disease Philanthropists (current and potential donators) General public who want information Research professionals - “…services to health care providers, patients, member organizations, educators, researchers, counselors and the general public.” -The Sickle Cell Disease Assoc. of America (http://www.sicklecelldisease.org)

8. Nonprofit Disease Specific Health8 Strategies to Attract Customers Celebrity Endorsement –Jerry Lewis Telethon for Muscular Dystrophy Association Partnerships with Hospitals & Schools Community Events (With online Info/Sign-Up) –Walk America (March of Dimes) –Tour de Cure (American Diabetes Assoc) –Light the Night Walk (Leukemia Society of America) –Great American Smoke Out (American Lung Association)

9. Nonprofit Disease Specific Health9 Provide organization information for potential donors  Annual Report, Financial Statements, Posted Meetings Publishing/Distribution of Educational Materials (all) Technical Training and Assistance (Sickle Cell) Research Support (all) National Convention and Workshops (all) Scholarships (all) Strategies to Attract Customers (cont.)

10. Nonprofit Disease Specific Health10 Sample Online Donation Forms User Registration www.cancer.org Donation Payment www.mdusa.com

11. Nonprofit Disease Specific Health11 Value Additions Partnerships with Major Merchants –5-15% of purchase benefits organization (Muscular Dystrophy, March of Dimes) Current Journal and News Articles Search engines/Online directory of medical resources Online secure sites for immediate donations Research publications Disease Information center –Definition, Prevention, Risk Factors, Detection/Symptoms, Treatment, and Survivorship)

12. Nonprofit Disease Specific Health12 Value Additions (cont.) Plan Gifts (for will or trust) –American Diabetes Association Statistical facts & figures (example from the American Cancer Society at right) Calendar of events and posted meetings across regions Health and social relative issues –Tobacco control on the American Lung Association page Multilingual-versions of the website site

13. Nonprofit Disease Specific Health13 Strategies to Retain Customers Site Customization (American Diabetes Foundation) Periodic funding opportunities for research professionals (all) –Customers are committing to an on-going relationship “Ask the Expert” service (Muscular Dystrophy Association) –If customers find the expert responses useful, they will come back when more questions arise Suggestion: Email newsletter (with unsubscribe option) –Targeted information for customer if they entered that info on the online form –Updates on new information/features on the site –Reminders to donate around tax time

14. Nonprofit Disease Specific Health14 Attracting, Retaining, and Adding Value: BIGGEST COMPONENT IS THE REPUTATION OF THE MAJOR PLAYERS! –Organizations follow AHRQ guidelines Only display and promote material aligned with standardized protocols of care

15. Nonprofit Disease Specific Health15 Conclusion Explosion of disease and health information on the Internet In 1998, 17 million people sought health information from the Internet, and the number was expected to double within 2 years (Source: GartnerGroup, 1998) –Many sites are not credible or regulated Value added features will be a pivotal role in the survival of non-profit disease specific sites