More informed, more empowered

Alberto E Tozzi

What patients want

Being informedHave access to medical informationParticipating in communities of peersBetter hospital serviceResearch meeting their needs

Widen the network of people we can talk withIncrease the velocity of these conversationsInject them with more source materialAllow to archive contentsMake them searchable

Social networks…

Susannah Fox

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 disabilitiesuse the Internet

Tozzi AE, in press

Which information families of patients with rare diseases search

Vaccines

Further pregnancy

Nutrition

Alternative therapies

Physical activity

Second opinion

Prevention of complications

Diagnosis

Specialty health provider

Therapy

Disease characteristics

0 10 20 30 40 50 60 70 80 90 100

Tozzi AE et al. Orphanet J Rare Dis. 2013

Effect of information found on the web

Changed my physician

Changed food habits

Increase anxiety

Useful for diagnosis

Improved disease management

Discussed with physician

Increased comprehension of disease

0 10 20 30 40 50 60 70 80 90 100

Tozzi AE et al. Orphanet J Rare Dis. 2013

Effect of participating in online social networks

Increased likelihood of discussing with physicianUseful for recognizing diagnosisImproved the management of disease

Tozzi AE et al. Orphanet J Rare Dis. 2013

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

Timian, Am J Med Qual, 2013

What if…

Patient centered questions

Expectations

Given my characteristics, my 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?

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 documentsIf children do not participate they will be scared and confusedAdults should not assume they know what young people want

Email??? No one uses email! We use Facebook chat to:CommunicateStay up-to-dateCheck medicationMeet other patients and others

Der Velden et al., J Am Med Inform Assoc 2013

…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 informationconnects me with other people with the same diseaseallows me to track how I’m feelingtracks how medications are performingsyncs with my wearable sensorsuses my past data to track my progress…data will be continuously monitored by my doc