Research and
Future Directions
Digital Strategies for Health Communication
Lisa Gualtieri, PhD, ScM
Tufts University School of Medicine
lisa.gualtieri@tufts.edu
July 19, 2013

Research projects
 Healthcare consumer mHealth, specifically…
 Use of 2-way SMS to increase adherence in diabetes
patients in India
 Mobile health app design
 Use of theoretical frameworks and evidence-based
guidelines
 Healthcare consumer use of online communities
and social media, specifically…
 Patient blogging
Agada Healthcare

Mohan Thanikachalam, MD, Managing Director, Agada
Healthcare

Wanted to pilot mHealth at Agada Healthcare to
 Increase compliance in diabetes patients
 Reduce costs for appointment reminder calls

Also rural (mHealth Education Platform - Rural NonCommunicable Disease (NCD) Prevention Program, funded
by Dimagi)
 Some different issues because lower incomes etc.
 mHealth in US ≠ mHealth globally

Sripriya Ravi, M.S.c, Mphil, MS, Head, Department Of
Diabetes Education

Provided guidance, answered questions, conducted surveys
Starting point of research was questions

Technology








Cell phone penetration
Cell phone use and how it is
changing
SMS (short message service) use
and cost
Receptivity to SMS for health
One-way vs. two-way
MMS (multimedia message
service)
Social media and email use
Smartphone use

Health

Diabetes demographics
 In India
 In Chennai
 At Agada Healthcare

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


Attitudes toward diabetes
Compliance (or adherence)
Prevention
Role of the family
Everyone: diet, fitness, etc.
Some: smoking, alcohol, etc.
To date
 2 surveys
They used one when planning Agada; we “cleaned”
and analyzed – 195 responses
2. I created one to fill in gaps in my knowledge since no
Pew or ComScore reports – 30 respondents
1.
 Sripriya on “typical” patients
 Literature review and ALE
 IRB letter
 Seeking funding for study
Survey Analysis Methodology
 Items in the survey were coded and analyzed with
Microsoft Excel statistical tools
 Aggregate findings are presented in the following
slides
 All data was provided de-identified
Objectives:
• Collect baseline data on SMS usage amongst Agada
patients
• Measure patient perceptions about SMS for health
information
Administered November and December 2012 to 30
respondents at Agada Healthcare
2012 Survey

Access
100% access to cell phone
family has
cell
phone
23%
cannot
receive SMS
3%
SMS access
have cell
phone
77%
can receive
SMS
97%
Sending & receiving
Sending SMS
don't send
on a regular
basis
34%
10+/day
8%
send
regularly
66%
SMS received per day
6-10/day
15%
3-5/day
38%
at least
1/day
39%
Communicating with other patients
Interested in communicating with other diabetes patients
via SMS?
not sure
13%
yes
35%
no
52%
Topics of interest
Desired SMS topic
57%
39%
14%
7%
14%
7%
7%
Frequency of messaging
Desired SMS frequency
any
14%
monthly
36%
daily
14%
semi-weekly
4%
weekly
23%
biweekly
9%
Family engagement
Family interested in diabetes care
information via SMS?
no
12%
Family interested in diabetes prevention
information via SMS?
no
22%
yes
88%
yes
78%
Typical adherent and non-adherent
diabetes patients at Agada Healthcare
Our questions
What are the typical patients
like?
Typical adherent
The most adherent and involved
patients are retired
Typical non-adherent
The least adherent are the busy middle
managers and executives
What is their health situation
Good BG control - hba1c, might be
overweight - but sense of well-being,
confident about managing
Regular clinic visits, diet control,
regular exercise,- knowledge – ranges
between medium to high awareness
Poor BG control, foot infections, weight
Is there family involvement
Usually less dependent, family might
be supportive
What transpires during the
course of their treatment
General review of targets and
reinforcement
How do they come to Agada
Healthcare
As routine visits
Dependent on others, family or spouse
usually their excuse for not being
adherent
Explore different strategies – behavioral
counseling, realistic goal setting,
lifestyle suitable advice etc.
Referred by doctors, unmanageable
symptoms, (typical diabetes related
symptoms: foot complications, frequent
infections, low sugar symptoms, burning
of feet, pain) fear of complications
How are their self-management
skills
Irregular clinic visits, medication non
adherence, excuses for exercise and poor
diet control
Literature Review – 1 Way SMS (Push)
Authors
Region
Condition
Population
Study
design
Intervention
Results
Bos, 2005
Appointment
adherence
301 adults
RCT
SMS appointment
reminder sent 24
hours prior
No significant
difference
Chen, 2008
Appointment
adherence
1848 adults
RCT
Phone call or SMS
reminder sent 72
hours prior to
appointment
Phone and SMS
attendance rate the
same and slightly
higher than no
reminder
Findings/Implicati
ons for Agada
pilot design
Preferred reminder
preferences in
decreasing order:
mail, phone SMS
Cost of SMS less
than cost of voice
call
Downer, 2006
United
States
Appointment
adherence
22,658 adults
RCT
SMS reminder 72
hours prior to
appointment
Failure to attend
rates lower,
especially with
existing patients
Cost savings
$12.20/appointment
kept
Franklin, 2006
Scotland
Diabetes
management
92 type 1
diabetics aged 8 18
RCT, 12
months
duration
United
States
Weight loss
65 overweight
adults
RCT, 4
months
duration
No significant
change in
adherence or
HbA1c
Intervention group
lost more weight
Aimed at improving
self-efficacy
Patrick, 2009
Automated SMS,
goal-specific and
tailored to
participant
Automated
messages with
behavioral
strategies
Participant could
alter number and
timing of messages.
Used multimedia
messages. 5-15
phone
conversations with
counselors
Literature Review – 2 Way SMS
Authors
Region
Condition
Population
Study design
Benhamou, France
2007
Diabetes
management
Randomized
crossover trial
Cho, 2009
Korea
Diabetes
management
31 type 1 adult
diabetics with
poor control
75 type 2
diabetics
Cocosila,
2009
Canada
Vitamin adherence 102 healthy
adults
RCT, 1 month
duration
Haapala,
2009
Hanauer,
2009
Finland
Weight loss
United
States
Diabetes
management
RCT, 12 months
duration
RCT pilot, 3
months duration
Kim, 2008
Kokher,
2009
Diabetes
management
India
Breast self-exam
Rami, 2006 Austria
Diabetes
management
Yoon, 2008 Korea
Diabetes
management
126 overweight
adults
40 diabetic
patients aged 12
– 25
RCT, 3 months
duration
Intervention
Results
Automated SMS reminder.
Subsequent reminder/
correction msg. Request to
reply after adherence
Automated, targeted,
weight-specific messages
SMS reminders for
monitoring blood glucose.
SMBG sent via text
Informal language – jokes, smileys
Inconclusive – adherence
increased but not statistically
significant
Findings/Implications for Agada pilot
design
SMS with advice based on
No significant improvement in Automated reporting of SMBG via PDA
review of SMBG
device
HbA1c but significant
improvement in quality of life
HbA1c levels decreased
SMS with medical advice
As significant as same approached
based on SMBG. Glucose
delivered through internet-based
scores recorded via web tool
intervention
Intervention group lost more
weight
SMS users requested more
reminders than e-mail users,
submitted more SMBG more
quickly
34 adult diabetic RCT, 6 months
Weekly recommendations by Changes in HbA1c, LDL, and
patients
duration
nurse to adjust medication, other health indicators
insutlin based on patient’s
SMBG
106 female adults Duration 6 months Use SMS to remind women After 2 months of reminders,
to perform BSE
BSE rate improved
significantly
HbA1c levels improved
36 type 1 diabetic Randomized
Medical advice based on
adolescents
crossover trial
SMBG, insulin, and dietary
info sent by participant.
Automated message when
no changes needed
60 type 2 diabetic QuasiParticipant sent SMBG,
HbA1C decreased
adults, 12 months experimental trial insulin, and medication
significantly in intervention
duration
information via computer or group
phone, nurse adjusted
treatment based on reports
Participants chose target weight. Could
initiate messages as desired
Website allowed user to set their own
reminder schedule, view, see reported
glucose levels. Most participants
preferred phone access to e-mail/web
Patients received reminder if they didn’t
input information at least 1 time/week
In person visit, with SMS follow-up to
reinforce behavior
Participants often had technical
difficulties and spent less than 1 minute
sending SMS
Information from patient could be sent via
internet on phone or computer.
Participant decided frequency of
reporting, but at least once/week.
Reminder messages sent after 1 week of
no activity
What have we learned?
 Rather than talk about results, what have we learned
about developing a study?
It is hard to find a set of text messages
And…
 People do not share everything (like text messages)
 Prevention is critical; is it unethical to not use an
opportunity to reach family members?
 If our IRB is different from their IRB, how is this
reconciled?
 When contacting the IRB, think about their perspective
 The more technology is involved, the slower the cycles:
from idea to funded research to published paper
 Opportunities in other countries introduce new cultural
issues
3 research projects
 Healthcare consumer mHealth, specifically…
 Use of 2-way SMS to increase adherence in diabetes
patients in India
 Mobile health app design
 Use of theoretical frameworks and evidence-based
guidelines
 Healthcare consumer use of online communities
and social media, specifically…
 Patient blogging
Research vs. personal experience
 I became interested in the lack (or low) use of
 Established theories
 Evidence-based guidelines
 to inform mobile health design
Then I started to run and use running apps
 What is the role
of personal
insights?
 What is their
value?
3 research projects
 Healthcare consumer mHealth, specifically…
 Use of 2-way SMS to increase adherence in diabetes
patients in India
 Mobile health app design
 Use of theoretical frameworks and evidence-based
guidelines
 Healthcare consumer use of online communities
and social media, specifically…
 Patient blogging
19 million people write blogs
People
have
long
communicated
the
People tell their experience of illness
experience of illness in writing
public
book
private
journal
letters
Technology has enabled new ways to
People
tell
their
experience
of
illness
communicate the experience of illness in writing
public
book
private
social media
blog
twitter
Facebook
journal
journal
on
CarePages
email
Technologyenabled
letters
Blogs are different
 Online communities and social media
 Short bursts, not continuous
 Blogs allow author to create a micro-community
 Open format unconstrained by
 Length
 Categories
 Topic
 Dated and tagged
 Incorporating multimedia
Problem Statement
 Lack of research on the phenomenon of patients with various
chronic illness diagnoses writing blogs
How many patient bloggers?
 13% of US e-patients write a blog about their diagnosis and treatment
(Pew 2010)

e-patients refers to the 61% of US adults who use the Internet for health
information
 Of the 69% of US adults reported having Internet access, 7% reported
blogging (HINTS 2007)
 Fertile field with
•
More than 133 million individuals living with chronic illness in the US
 National Center for Health Statistics, 2006
•
The popularity of blogs and other social media
•
Increased visibility on hospital and media websites
 Assistive technologies make writing possible for individuals with
disabilities and chronic illness
How many blogs?
 24,000 health or health-related blogs
 Largest number of patient blogs are about cancer
 Women with or survivors of breast cancer are
particularly active
Initial Interest
 Gary Klatsky, Professor
of Psychology at SUNY
Oswego, who blogged
about his cancer
 His final post was
January 10, 2009
 Continued for short
time by family to
announce funeral and
scholarship fund
Many patient bloggers
 Most, like Gary’s, are written by individuals about their
diagnosis and treatment
 Not widely read
 Not heavily commented
 Hard to find: http://garysurgery.blogspot.com/
 A few are widely read and promoted
Leroy Sievers, NPR
Dana Jennings, New York Times
Mimi Rodriguez,
Baptist Health
South Florida
Some site support public or private blogs
Examples are Everyplace…
Preliminary study
 Survey to people we knew and posted on Twitter
 From 24 respondents we learned most start and maintain a blog
to
 Help others with the same diagnosis
 Communicate with family and friends
 Express feelings
 Track the progression of the disease and treatment
 Quotes
 “As the months have passed, I have been making my posts
philosophical as well as informational; expressing my
thoughts as well as my condition. I find some comfort in
doing that.”
Analysis of preliminary study indicated
benefits
•
•
•
•
•
Individual patients and caregivers
Family and friends of patients
Other people in similar situations
Healthcare providers
Medical community
Hypothesis
Communicating the experience of
illness through blogging provides
positive psychosocial benefits to some
patients with chronic illness.
Theoretical framework
 Research is grounded in nursing theory
 Dr. Margaret Newman’s theory Health as Expanding
Consciousness recognizes that health is an awareness or
consciousness of the evolving interaction between the
individual and his or her environment and is possible
regardless of presence or absence of disease.
Project methods

Literature search revealed a paucity of information on patient blogs

Initiated formative qualitative research to design an online survey

Developed an online consent to fully inform participants and meet Tufts
Medical Center IRB regulations

IRB submitted and approved by Tufts Medical Center

A convenience sample of 41 current patient bloggers solicited through
social media forums, online patient communities, and Boston Globe

Data analyzed for psychosocial themes as well as demographic data

Recognize that the cohort is a self-selected group of English speaking
patient bloggers
Survey instrument

34 question online survey tool designed and tested through Survey
Monkey™, a widely used survey aggregator/collector allowing for safe,
SSL encrypted data transmission
•
Survey questions consisted of a mix of closed-ended multiple choice
and matrix design questions and open-ended essay/comment
questions inquiring on motivational and psychosocial factors relating to
blogging.
•
Demographic data questions (age range, gender, educational level,
race/ethnicity) are also asked
•
Any question in the survey could be skipped by the respondent with the
exception of Question 1 which served as the informed consent and was
required to be answered in the affirmative
Sample questions
• What is the diagnosis or illness that prompted you to begin a blog?
• Has writing a blog made a difference in how you have dealt with
your illness? How?
• Has writing or reading patient blogs changed your sense of
connection with others?
• Have you shared your blog with your health care provider?
Results

High level of co-morbidities among the sample group:
•
Isolating illness, such as chronic pain, fibromyalgia, depression
•
Rare diseases or uncategorized illness
•
Cancer, particularly breast and ovarian
•
Diabetes
•
Common features included chronicity of illness and potential for
pain and suffering

Demographic data revealed:
•
Relatively homogenous cohort
•
Predominantly female
•
Caucasian
•
Highly educated
•
79% between ages of 25-55
Public nature of blogs

Majority of blogs were searchable and public

Most bloggers used their own names when blogging versus a pen name or blogging
anonymously

>80% shared their blogs with friends and family members

>95% read other people’s health/illness blogs

>80% have contributed comments on other people’s blogs

Majority of respondents engaged in other forms social media, in addition to
blogging (most common were Facebook, Twitter)
Blogs shared with providers
 Less than 1 in 4 respondents shared their blogs with their
healthcare providers (HCP)
 Reasons:
 HCP wouldn’t be interested
 HCP doesn’t have time
 Want to vent
 Concerned about judgments or repercussions to care
 Blog is “my” reality
Some psychosocial themes identified
 Increased connection with others
 Decreased sense of isolation
 Increased ability to tell one’s illness story to others
 Increased accountability (to self and others)
 Increased sense of efficacy
 Increased sense of purpose, meaning and
understanding of illness
Many ethical issues arise when studying blogs
 What is invasive to blog authors?
 What feels voyeuristic to you? Do you ever feel like a
stalker?
 Can you register, follow, “like”?
 Can you comment?
 Can you contact them?
Illness is replete with emotional experiences
 Can you laugh? Can you cry? Can you count your blessings?
 What do you say when someone is ill or dies?
 Acknowledgments
 We thank Gary Klatsky, PhD, as the source of inspiration
behind the initial study that led to this research. Gary, who is
now deceased, wrote a blog about his brain tumor and
spoke to one of the authors (LG) about the reasons he
started his blog.
More and more questions arise

Further investigation of positive emotional and physical health outcomes

Should blogging be recommended to newly diagnosed patients?
•
Are there patients who, based on their disease or stage of disease,
would benefit from blogging but would not think to?
•
Are there differences based on type of illness, such as visible/hidden?
•
Should healthcare providers recommend starting a blog and, if so, is
there an optimal time?
•
Development of educational tool to assist patients/providers in
initiating a patient blog

Is there a better mechanism to help patients locate relevant blogs?

What can be learned about the experience of illness from analyzing patient
blogs?
Being experienced in medical procedures, I have a uniform I wear to them
now: velour sweat pants, matching velour zippered jacket (essentially
Juicy Couture track suit knock-offs), a tank top, and a pull-up bra, like a
Coobie. I top it off with slip-on Tom's shoes. Before I leave the house, I
take off all my jewelry including wedding bands. With this outfit,
whatever they want off me comes off easy, putting it back on is pain-free,
and whatever I get to keep on is comfy and warm. Plus, I still look
presentable to the public, like I actually got dressed. Hey, if Eva Longoria
wore track suits out to the store on Desperate Housewives, I certainly can
to a medical waiting room. And, if need be, (and need always be) I can go
straight to bed in it. Talk about your duel-need clothing. Although it was
108 on the day I went for the procedure, I really needed the jacket that
came with it.
Repository of Blogs
 Create a repository of patient blogs in which
patients can search for a specific type of blog or
blogger
 Define what makes good matches based on patient
needs and measures of quality (to filter out blogs
promoting products or erroneous information)
 Search for, filter, and index blogs on an ongoing basis
(since the content is not static)
 Develop a specialized search engine that returns and
ranks results
Learn from Blogs
 Help cancer patients, clinicians, and researchers to learn
from blogs



Textual summaries of individual blogs to patients or
clinicians
Timelines of the course of a patient’s disease and
treatment based on dated entries and content analysis
Answer questions about how cancer patients
 react to diagnoses
 develop coping strategies
 experience and mitigate side effects of treatments
 address the challenges of treatment adherence
 other aspects of life as a cancer patient
Next steps

Are there successes that can be learned from?

Aggregation sites


Search tools



News and travel repositories that aggregate blogs
Dating sites
Technologies to “mine”

Increasingly used for social media

Sentiment analysis

Disease and disaster detection
Proof of concept
Many ethical issues arise when studying
mHealth, online communities, and social media
 What is invasive to them? What feels voyeuristic to you?
Do you ever feel like a stalker?
 Can you register, follow, fan, and friend?
 Can you comment?
 Can you join a twitter chat? In what role?
 Use of Social Media for Injury Prevention in Farm Children
Illness is replete with emotional experiences
 Can you laugh? Can you cry? Can you count your blessings?
 What do you say when someone is ill or dies?
 Communicating the Experience of Chronic Pain and Illness
Through Blogging, J Med Internet Res 2012;14(5):e143
 Acknowledgments: We thank Gary Klatsky, PhD, as the
source of inspiration behind the initial study that led to this
research. Gary, who is now deceased, wrote a blog about his
brain tumor and spoke to one of the authors (LG) about the
reasons he started his blog.
66
The Future of Digital Health Communication
 People going online instead of going to a doctor
 People using poor quality or deceptive information – the
barriers have dropped
 People misusing or misunderstanding information
 People obsessively searching
 People who are scared to death
 People confronting their doctors or not telling their
doctor about their “Dr. Google diagnosis”
67
“Don’t ask, don’t tell” culture
 Doctors don’t ask and patients don’t tell
 Yet patients are increasing relying on technology especially with
social media and mobile
 Are patients less likely to ask their doctor questions because they
plan to look it up?
 If so, is that “empowering” or dangerous?
Interventions can
avoid “don’t ask,
don’t tell”
68
69
Better health literacy skills
Better training of
healthcare professionals
Better design
70
Better health literacy skills
 How to search
 What to look for – dates,
authors, seals
 How to communicate with
a physician
 What to believe and when
and how to be skeptical
Better training of
healthcare professionals
 What and when to ask patients
 What and when to recommend
 Which to recommend
 How to increase health literacy skills
71
Better design of health
sites, social media, and apps
 Test on real users with mixed health literacy skills in context
 Conduct formative evaluations from the start
 Have clear health goals and measure success at achieving
them
 Use better imagery
 Clear branding and accreditation
72
73
Accreditation
 Works when
 Accreditation exists
 Processes are transparent
 Processes are not criticized
 Healthcare consumers know to look
 Happens in other domains
 Is there a better way in healthcare?
74
Patients
Intermediaries:
Medical librarians,
Pharmacists,
Health coaches,
Patient navigators,
etc.
Physicians
Technology
More assistance through…
75
Intermediaries help patients
 How to search and what to search for
 How to detect the quality of expert-generated
content
 How to use user-generated content
 When to contribute user-generated content
 How to communicate with physicians about online
activities
76
Intermediaries help physicians
 What their patients are doing online
 What resources their patients need
 How to communicate with patients about online
activities
77
Patients+
Intermediaries:
Medical librarians,
Pharmacists,
Health coaches,
Patient navigators,
etc.
Physicians
Technology+
Toward a better future for consumer healthcare