More informed, more
empowered
Alberto E Tozzi
What patients want
Being informed
Have access to medical information
Participating in communities of peers
Better hospital...
Widen the network of people we can talk with
Increase the velocity of these conversations
Inject them with more source mat...
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
70%of patients with disabilities
use the Internet
Tozzi AE, in press
Which information families of patients with
rare diseases search
0 20 40 60 80 100
Vaccines
Further pregnancy
Nutrition
Al...
Effect of information found on the web
0 20 40 60 80 100
Changed my physician
Changed food habits
Increase anxiety
Useful ...
Effect of participating in online social
networks
Increased likelihood of discussing with physician
Useful for recognizing...
Clinical study recruitment
Only10% of patients with chronic diseases
participates in clinical studies on their disease
Nea...
Timian, Am J Med Qual, 2013
What if…
Patient centered questions
Expectations
Given my
characteristics, m
y conditions and
my
preferences, what
will happen to
m...
How do your disease impact in
everyday life?
Science should not be a luxury
Why not involving young patients in
research?
Children get bored in reading long and
complicated documents
If children do ...
Email??? No one uses email!
We use Facebook chat to:
Communicate
Stay up-to-date
Check medication
Meet other patients and ...
…my doctor has prescribed me to
participate in an online community of
patients…
…my doctor has prescribed me to use a
free application for my smartphone
that:
provides high quality information
connects ...
The Value of Online Communities
The Value of Online Communities
The Value of Online Communities
The Value of Online Communities
The Value of Online Communities
The Value of Online Communities
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The Value of Online Communities

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The Value of Online Communities

  1. 1. More informed, more empowered Alberto E Tozzi
  2. 2. What patients want Being informed Have access to medical information Participating in communities of peers Better hospital service Research meeting their needs
  3. 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. 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. 5. 70%of patients with disabilities use the Internet Tozzi AE, in press
  6. 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. 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. 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
  9. 9. 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
  10. 10. Timian, Am J Med Qual, 2013
  11. 11. What if…
  12. 12. 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?
  13. 13. How do your disease impact in everyday life?
  14. 14. Science should not be a luxury
  15. 15. 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
  16. 16. 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
  17. 17. …my doctor has prescribed me to participate in an online community of patients…
  18. 18. …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

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