The Value of Online Communities
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By Dr. A.E. Tozzi
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The Value of Online Communities
- 1. More informed, more empowered Alberto E Tozzi
- 2. What patients want Being informed Have access to medical information Participating in communities of peers Better hospital service Research meeting their needs
- 3. Widen the network of people we can talk with Increase the velocity of these conversations Inject them with more source material Allow to archive contents Make them searchable Social networks… Susannah Fox
- 4. How families of patients with rare diseases use the web 41,8 70,8 17,2 7,3 Tozzi AE et al. Orphanet J Rare Dis. 2013
- 5. 70%of patients with disabilities use the Internet Tozzi AE, in press
- 6. Which information families of patients with rare diseases search 0 20 40 60 80 100 Vaccines Further pregnancy Nutrition Alternative therapies Physical activity Second opinion Prevention of complications Diagnosis Specialty health provider Therapy Disease characteristics Tozzi AE et al. Orphanet J Rare Dis. 2013
- 7. Effect of information found on the web 0 20 40 60 80 100 Changed my physician Changed food habits Increase anxiety Useful for diagnosis Improved disease management Discussed with physician Increased comprehension of disease Tozzi AE et al. Orphanet J Rare Dis. 2013
- 8. Effect of participating in online social networks Increased likelihood of discussing with physician Useful for recognizing diagnosis Improved the managementof disease Tozzi AE et al. Orphanet J Rare Dis. 2013
- 10. Clinical study recruitment Only10% of patients with chronic diseases participates in clinical studies on their disease Nearly 75% of phase II-III studies are delayed because of insufficient recruitment
- 11. Timian, Am J Med Qual, 2013
- 12. What if…
- 13. Patient centered questions Expectations Given my characteristics, m y conditions and my preferences, what will happen to me? Options Which options, which potential risks and benefits should I expect? Outcomes What I can do for improving the outcomes of my disease that I feel most important? Decisions How clinicians and the health care system may help me to take best decisions on my health and on my healthcare paths?
- 14. How do your disease impact in everyday life?
- 18. Science should not be a luxury
- 20. Why not involving young patients in research? Children get bored in reading long and complicated documents If children do not participate they will be scared and confused Adults should not assume they know what young people want
- 21. Email??? No one uses email! We use Facebook chat to: Communicate Stay up-to-date Check medication Meet other patients and others Der Velden et al., J Am Med Inform Assoc 2013
- 22. …my doctor has prescribed me to participate in an online community of patients…
- 23. …my doctor has prescribed me to use a free application for my smartphone that: provides high quality information connects me with other people with the same disease allows me to track how I’m feeling tracks how medications are performing syncs with my wearable sensors uses my past data to track my progress …data will be continuously monitored by my doc