Maryam Moghaddam-Zadeh University of Colorado at Boulder

Maryam Moghaddam-Zadeh
University of Colorado at Boulder
November 2012
 Context
of the practicum
 Iranian Epilepsy Association (IEA)
 How to help IEA?
 Objectives of the Practicum
 Methodology
 Results & Discussion
 Conclusion & Recommendations
 Tehran
(high speed ADSL)
 Boston
(home)
 Boston
(Harvard uni)
 Recurrent
Seizures, 2+
 Seizure disorder
 Not a disease!
 Seizure:



Sudden excessive electrical discharge
Blank stare, muscle spasms, uncontrolled
movements, altered awareness…
Rarely, or often
 Controlled
by Medication - sanctions
 50 M people, 1% of population…
Evaluation of their existing ICTs
 How can it be improved? (Evaluation)
 What do the stakeholders prefer?
(For Education & Communication)
 Which method/technology is more
convenient & practical?

Learn
about
Epilepsy
& Possible
ICT
Solutions
Read the
previous
surveys for
IEA & online
Identify their
need for
surveys &
stakeholders
Design
Surveys
U.S.
Donors
Doctors
Families
Patients
Pretest
Data
Collection
Data
Entering
Iran
Data
Analysis
Conclusions &
Recommendations
Report to IEA
U.S.
Implementation
by IEA
 70
Surveys
 108
Surveys
 97
Surveys
Donors (n=68, f=293)
12%
IEA Website
11%
11%
TV & Radio
10%
Priodicals
8%
Poster & Brochure
Seminar
Doctors (n=91,f=202)
17%
Social Networks
17%
Seminar or
Conferences
15%
14%
IEA Periodicals
11%
Websites
Electronic books
Patients & Families (n=84, f=246)
24%
18%
13%
13%
8%
Text Message
IEA Periodicals
TV or Radio
Phone calls
Email
Have you seen IEA's website?
Yes
No
74%
90%
92%
26%
10%
Donors (n=49)
8%
Doctors (n=106)
Patients & Families
(n=66)
Have you seen IEA's periodicals?
Yes
No
14%
42%
68%
86%
58%
32%
Donors (n=56)
Doctors (n=98)
Patients & Families
(n=63)
Have you seen books published by IEA?
Yes
No
51%
54%
49%
46%
Doctors (n=100)
Patients & Families
(n=61)
80%
20%
Donors (n=55)
What is your reason for helping IEA? (n=65, f=80)
56%
21%
14%
9%
To do charity
Because of my
knowledge about this
condition
Others
One of my relatives
or friends has
epilepsy
Donors (n=63, f=105)
30%
Patients & Families
(n=79, f=246)
17%
28%
23%
11%
11%
6%
10%
10%
10%
 “Text
messages” for patients, “email” & “text
messages” for doctors
 Text messages are more practical than email
 Advertise website, & update regularly.
 Improve “periodicals” in quality and quantity,
add a scientific one for doctors.
 Focus on TV & Radio, & traditional approaches
for awareness of epilepsy & increase in donations
 Have IEA brochures at doctors’ offices & hospitals
Short Term
 Needs Assessment
results
 Tested questions &
experience in survey
& synthesis
 Email address
collection
 Website
improvement
Long Term
 Developed
methodology for reevaluation &
improvement
 More effective
communication in
the future
 Foundation for text
Message and Email
infrastructure
development
 Learned
about
Epilepsy
 Acted as IT,
networking, email,
tech person +
translator (Farsi)
 Survey Design
 Data Collection &
synthesis
 Analyzing results
 Interview
 NVC
 Enthusiasm
of IEA
for growth
 Felt part of the
family & will visit!
 Campus VPN is
useful!
 Download all apps
before going
 Knowing the
language helps
 Bottom-up
processing
 Ask people before
you assume
something!
 Working in the
developing world
 You
might know
50%, they know
the other 50%
 Learn from each
other
 Dr.
Revi Sterling
 Ms. Ruscha Cohen
 University of CO &
ATLAS Program
 IEA




 Dr.
Bolhari
 Dr. Mostafaei






Staff (alphabetical order):
Ms. Abbasi
Ms. Bagheri
Ms. Edalat
Ms. Farokhi
Mr. Ghodsi Nezhad
Ms. Hossein Mardi
Ms. Javadi
Ms. Moosavi
Ms. Nazari
Ms. Saei
Donors (n=68, f=293)
20%
10%
0%
Poste
Class Askin
IEA
IEA
Educa
In
Phon
TV & Priodi r & Semin News
Audio
Other
or g an
classe
Email SMS Books
Websi
tional
perso
e
Radio cals Broch ar paper
Books
s
unive exper
s&
te
DVD
n
calls
ure
rsity
t
wor…
Series1 12% 11% 11% 10%
8%
7%
7%
6%
6%
4%
4%
4%
4%
3%
1%
1%
0%
Doctors (n=91,f=202)
20%
10%
0%
Seminar
Posters
Social
IEA
Electro
Website
Phone
TV or
or
and
Networ
Periodic
nic
s
calls Brochur Radio
Confere
ks
als
books
nces
es
Series1 17%
17%
15%
14%
11%
8%
5%
5%
Educati Attendi
onal
ng IEA
DVDs Classes
4%
2%
Audio
books
Others
1%
0%
Patients & Families (n=84, f=246)
30%
20%
10%
0%
Text
IEA
Messag Periodi
e
cals
Series1 24%
18%
TV or
Radio
Phone
calls
Email
13%
13%
8%
Attendi Educati Seminar Posters Electro Social
Website
Others
ng IEA
onal
or
and
nic
Networ
s
Classes DVDs Confe… Broch… books
ks
6%
5%
4%
4%
2%
2%
2%
0%
Would you like to register in epilepsy
social networks and participate in
them actively? (n=77)
No
43%
Yes
57%

Option 1 was “social
networks” for doctors’
choice of
communication!
Doctors (n=34,f=62)
40%
13%
Updating
regularly
11%
11%
8%
6%
6%
Patient’s access Multi language Login protected Easier access to Change in
Chat real time
to doctor’s
health forum different pages
graphical
with patients
office info
appearance of
website
Patients & Families (n=17, f=29)
24%
21%
17%
10%
Login
protected
health
forum
Chat real
time with
doctors
Updating
regularly
10%
7%
Multi
Chatting
Easier
language online with access to
other
different
patients
pages
7%
Patient’s
access to
doctor’s
office info
3%
Others
0%
Change in
graphical
appearance
• Donors had few suggestions (lack of options): advertisement of
website
3%
Others
50%
44%
Doctors (n=58, f=87)
40%
30%
18%
20%
14%
9%
9%
Increasing the
number of
periodicals
published per year
Other
10%
6%
0%
Creating a scientific
Improving the
Improving the
periodical about
quality of the
quality of content’s
epilepsy
published content
design and color
Improving the
graphics and images
on the cover
Patients & Families (n=39, f=43)
35%
30%
25%
20%
15%
10%
5%
0%
30%
26%
16%
Improving the
quality of the
published content
Increasing the
number of
periodicals
published per
year
Creating a
scientific
periodical about
epilepsy
14%
Other
7%
7%
Improving the
graphics and
images on the
cover
Improving the
quality of
content’s design
and color
(n=28,f=40)
Get an answer to my
question
3%
Reading IEA
Others
0%
Finding out IEA’s
account number to
donate money
3%
periodicals
7%
Finding out IEA’s
address and phone
number
10%
Getting information
about Epilepsy
15%
Reading News about
epilepsy
62%
Text messages
(n=88)
Email (n=83)
once a
month
2%
2-3 times a
month
8%
No
7%
No
30%
How often do you usually
check your emails?
Less than
(n=92)
Never/I
don’t have
email
2%
Once a
week
10%
Yes
70%
Yes
93%
2-3 times a
week
30%
One or
more
times a
day
48%
• Practical? Yes. 88% of doctors said they check their emails at least once
a week.
Would you like to forward
educational emails and text
messages to your friends and
patients? (n=80)
Would you like to answer
patients’ questions on the
phone or using email? (n=72)
No
40%
Yes
44%
Yes
60%
No
56%
Donors’ Frequency of checking
emails (n=39)
never/I
don't
have
email
15%
once in
2-3
months
10%
once a
month
13%
once a
week
15%
one or
more
times a
day
26%
1-3
times a
week
21%
• 60% of them will share this info – So you can count on emails and text
messages as a communication method
• 44% of them will answer patients’ questions on email/phone –take
advantage of that…
• Patient’s active use of email? IEA sends questions to doctors, but sharing?
(ex: 62% of donors check emails at least once a week)
 “Introduce
to IEA”
& “Talking”
(n=56, f=74)
Text
Message
7%
Others
9%
Email
12%
Introduce
to IEA
46%
Talking
26%

How did you become familiar with
epilepsy? (n=67, f = 84)
advertisemen
school or
ts
university
6%
6%
Media
12%
One of my
family
members or I
have epilepsy
19%

others
27%
friends and
acquaintance
s
30%
Sending brochures
to donors may help
Videos at IEA? Or
even on Metro/TV
 Others:
brochures,
newspapers, ads
How would you like IEA to
respond to your questions?
(n=43, f=160)
Letter
12%
Others
2%
Visiting
IEA in
person
14%
Phone
Conversat
ion with a
therapist
16%
place where
phone calls won the
vote by a bit

Phone
Call
21%
IEA
Website
18%
Text
Messages
17%
 Only
Not a drastic
difference though
 We
forgot to include
email in options,
but:



IEA website
Text messages
Another phone call:
talking with a
therapist