The Evolution of a Web Strategy: The Road Back Foundation

1. The Evolution of a Web Strategy:The Road Back Foundation Diane Aronson

2. A Patient’s Connection to the Road Back Web Site • Health history • Rheumatoid arthritis (RA) treatments • Discovered the book The Road Back and learned about a different treatment using antibiotics. • Researched and found patients who had used the treatment and done well.

3. Why Try Antibiotic Treatment? • Had joined Arthritis Support Group and met many very ill patients on traditional treatments. • Investigated tetracycline antibiotics and learned class of drugs used long-term for acne and patients with chronic bronchitis. • Had growing concern about potentially toxic drugs used for RA treatment given past health and future, thus highly motivated to try option.

4. Merits of Antibiotic Treatment • Growing body of scientific evidence. • Proven safe and effective. • Enhances quality of life. • Improves disease markers. • Low incidence of side effects • Cost-effect.

5. Involvement with the Road Back • Background in education and advocacy • Years of work with nonprofits • Association with health-related nonprofits • Personal history of rheumatoid arthritis • Was on Board of Directors and Past President

6. Road Back Foundation -Early Organizational Structure • Began in 1993 and grew as an international Foundation with Chapters in the US, Canada, Australia, the United Kingdom and Japan. • Board of Directors, one paid Director with consultants for book keeping, etc. • Charged for all literature and newsletters. • High costs for printing and mailings.

7. Road Back FoundationMISSION STATEMENT The Road Back Foundation provides information about and advocates for antibiotic treatment for rheumatic diseases.

8. Challenge Addressed • Although the antibiotic treatment for RA had a peer review, journal-reported proven effective and safe multi-center NIH double-blind study (Lancet, 1994), patients were not hearing about the treatment from rheumatologists. • In the mid-1990s, a static Web site was established in order to reach others and promote the mission and patient resources.

9. Late 1990s • More patients using the internet to access information and less meeting in person – eventually Chapters were discontinued and Web site APNCs were established (Antibiotic Protocol Network Contacts). • An interactive Discussion Forum (Bulletin Board) became a vital resource (3 volunteers worldwide). • Peer-to-Peer Network an important component supporting the patient information on the site.

10. Changes during early 2000s • Became all volunteer effort with paid Web consultant. • Ended the sale of literature, protocol and study information, etc. -- all free on the site. • No paid staff, lessening of administration and need for fundraising for costs such as mailings. • Eliminated hard-copy newsletters – now periodic E-Bulletins with medical-related studies, Road Back information and articles about patients’ progress on the treatment (more than 4.500 subscribers).

11. Accomplishments -Beyond the Web Presence • Commissioned the landmark Harris Poll of patients using antibiotics who reported positive results with treatment. • Supported clinical trials and basic research. • Funded media information campaigns targeting national and community newspapers. • Presence at medical meetings and health fairs.

12. Continuing Issues to Track • The Road Back Foundation is an all volunteer effort and takes no industry contributions. Finding the time and making changes to the Web site can be difficult. • Locating trusted and savvy volunteers to monitor the site or conduct chats is an on-going challenge. • An appeal to lessen the number of locations on the site that donations are sought has resulted in very few contributions given. • No capturing of names and addresses as no administrative staff – no snail mail effort to fundraise.

13. Why Continue the Effort? • Commitment of volunteers to provide useful information and support that is not found elsewhere. • Millions of hits since inception (most lurk on BB). Countless numbers have benefitted from a treatment that is effective, mild in side effects, can be inexpensive and proven safe. • Site testimonials prove Web site is a vital connection for those who are struggling with chronic diseases such as rheumatoid arthritis.

14. Problems with Outreach on the Internet • Antibiotic treatment is diverting patients from using newer and more costly treatments so the Road Back Web site may be viewed as a challenge to industry profits. • Web sites create opportunity for outreach but also for potential attack from some who might not want your mission to succeed. • Finding enough voices to respond and with a consistent message can be difficult.