ACOR is a non-commercial platform launched in 1995 for e-patients with a focus on cancer, providing a space for information sharing and community support. With a membership of 60,000 and over 1.5 million emails sent weekly, ACOR facilitates access to relevant medical data, promotes patient engagement in research, and addresses the lag between clinical research and practice. The platform emphasizes the importance of patient experiences in healthcare, advocating for a more integrated approach that utilizes patient knowledge to improve health outcomes.

1. Social Networks for e-Patients Sharing Accurate, Current Information and Data ACOR Communities ACOR Communities

2. Started 1995, initially as central archival site for cancer listservs Community center started 1996 No commerce, no ads, no fluff! Purely an information provider & community builder ECCO :: 25/09/11 ACOR . org HISTORY

3. 165 public communities and 50 private All communities have closed archives. ACOR is part of the deep web Current membership: 60K Served >600K subscribers since 1996 Delivering on average ~ 1,5 Million emails weekly ECCO :: 25/09/11 ACOR . org STATS

4. STATS Community size: from 60 subscribers to 3K. Optimal size for active groups: 1-3 K. Could be larger Many cancer are orphan diseases. But disease specific community of 1,000s. Can represent significant % of patient population ECCO :: 25/09/11 ACOR . org

5. Helping cancer e-patients. Worldwide. Promoting dissemination of scientific information in a supportive environment Facilitating personal story sharing, with emphasis on medically or QOL significant events ECCO :: 25/09/11 ACOR . org GOALS: ACTIVATION

6. Access to relevant & current information Bypassing built-in ‘ Lethal Lag Time ’ Research opportunities with patient participation Data collection from within communities Clinical trial recruitment ECCO :: 25/09/11 ACOR . org GOALS: ACCELERATION

7. Knowledge is in constant Beta No individual can fully keep up with medical currency ECCO :: 25/09/11 ACOR . org ISSUES: KNOWLEDGE

8. Much that is problematic of the professional, as the purveyor of expert knowledge, derives from the fact that she/ he is at most only one step ahead of enlightened lay practitioners. Anthony Giddens The Consequences of Modernity, 1999 ECCO :: 25/09/11 ACOR . org ISSUES: KNOWLEDGE

9. It ’ s not the size of the data that kills you, it ’ s the size of the metadata. The methods of social science are dear in time and money and getting dearer every day. ECCO :: 25/09/11 ACOR . org ISSUES: DATA

10. We just can ’ t wait any longer ECCO :: 25/09/11 ACOR . org ISSUES: LETHAL LAG-TIME

11. It takes an average of 17 years to implement clinical research results in daily practice Andrew Balas, MD, PhD, 2000 ECCO :: 25/09/11 ACOR . org ISSUES: LETHAL LAG TIME

12. The plural of anecdote is NOT data Large compendiums of patient conversations are more than anecdotes More than 3/4 of medical interventions are either self-help or take place without any healthcare professional Scientists & doctors are patients too ECCO :: 25/09/11 ACOR . org ISSUES: CONVERSATIONS

13. The patient is the most underutilized resource of the healthcare system. Let Patients Help! Making the user the point of integration has the potential to be profoundly different & more efficient than current practices ECCO :: 25/09/11 ACOR . org SOLUTIONS

14. SOCIODEMOGRAPHICS Health Status ECCO :: 25/09/11 Other Status ACOR . org

15. SOCIODEMOGRAPHICS ECCO :: 25/09/11 ACOR . org

16. With Gleevec & GIST, ACOR saved many lives & record-breaking trial accrual Myeloma group conducted ground-breaking post-marketing study on biphosphanates and necrosis of the jaw For renal cell carcinoma, patients from 1 major institution: they learn they would never be told of the only potentially curative treatment Across system, daily conversations about side effects that are not found in FDA public documentation ECCO :: 25/09/11 ACOR . org RESULTS

17. Zometa approved in Feb. 2002, as successor to Aredia Approval of 15 minute infusion without any mention of kidney toxicity or high creatinine level IMF/ACOR ’ s MYELOMA start to receive reports of high creatinine levels, some with serious renal failure After getting advice from experts messages to MYELOMA telling everyone that infusion time MUST be 30 minute Kidney issues from Zometa dramatically reduced ECCO :: 25/09/11 ACOR . org ADVERSE EVENT REPORT

18. Osteo Necrosis of the Jaw (ONJ) reported in 2 studies of Zometa (2003,2004) MYELOMA group started telling members talking any biphosphanates they should avoid any invasive procedure to the jaw - tooth extraction a common trigger IMF used MYLEOMA group to conduct survey. 904 members responded in 30 days, captured data for diagnosis, treatments & complications Results published at ASH, FDA ODAC & NEJM (Durie, Katz, Crowley; 07/07/05, p99) ECCO :: 25/09/11 ACOR . org ADVERSE EVENT REPORT

19. Social networks of rare cancer patients are often the best source of high quality information. Rethink what are authoritative answers Networked patients are inventing and shaping a better healthcare model LET PATIENTS HELP! We have seen nothing yet! ECCO :: 25/09/11 CONCLUSIONS ACOR . org

20. Doctors will get off their pedestals when patients get off their knees - Dr. Tom Ferguson ECCO :: 25/09/11 ACOR . org