Communicating with the Empowered E-Patient

Report 2: E-Patients | December 14, 2009

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Widen Your Health Marketing Communications Perspective

E-Patient Essentials Communicating with the
E-Patients: How They Can Help Us Empowered E-Patient
Heal Healthcare
Groundbreaking 2007 white paper
outlining and defining the e-patient
movement. Learn More
I n 2007, the E-Patients Working Group published a seminal
white paper on behalf of the late Tom Ferguson, MD. This
The Social LIfe of Health Information publication, titled “E-Patients: How They Can Help Us Heal
The Pew Internet & American Life Healthcare,” provided an overview of a new movement that was
Project's 2009 report on the online habits being led by patients, caregivers and others dissatisfied with the
of e-patients. Learn More status quo and determined to play a larger role in their medical
care.
Older E-Patients Prefer Facts, Not
Friendship from Health Organizations
In the white paper, Dr. Ferguson tells the tale of Marian
Communicating via Social Media
Blog post on the Path of the Blue Eye Sandmaier, who struggled to acquire the appropriate care for her
Project's blog, Walking the Path, teen-age daughter. In 1999, Sandmaier took her child to the
focusing on what older e-patients want family pediatrician to investigate why her daughter was
from health organizations communicating complaining about having severe headaches, neck pain and a
via social media. Learn More “sloshing sound inside her head.” After checking the girl over, the
doctor gave a “likely” diagnosis of sinuses, advising the mother to
The E-Patient Revolution “call back in two weeks if sheʼs still having problems.”
Video developed by marketing
consultancy Kru Research focusing on Sandmaier went home and turned on her computer. Her daughter
e-patients. Learn More had been taking a prescribed antibiotic for a skin condition. After
Sandmaier typed “minocycline” and “side effects” into her search
engine, she learned the drug could be associated with a rare side
effect, pseudotumor cerebri ― an accumulation of fluid around the
brain causing severe headaches, neck pain and an unusual
whooshing sound inside the head. Further, the condition can
damage the optic nerve, producing serious vision problems and,
in some cases, blindness.

Sandmaier then took her daughter and a printout of her online
research to the dermatologist who prescribed the antibiotic.

Editor: Merry J. Whitney
A Path of the Blue Eye
Project Publication Send report tips to
www.pathoftheblueeye.com merry@pathoftheblueeye.com


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Communicating with the Empowered E-Patient
This doctor dismissed Sandmaierʼs concerns, but switched her daughter to a different prescription ―
another antibiotic associated, albeit rarely, with pseudotumor cerebri. A neuro-ophthalmologist, the third
doctor consulted, correctly diagnosed her daughterʼs condition. Discontinuation of the antibiotics cleared
up her symptoms.

Sandmaier is a medical journalist. Her article about her experience appeared in the Washington Post, and
won the 2004 American Society of Journalists and Authors Award for essay writing. Sandmaier is also a
prototype of the twenty-first century e-patient.

E-Patients: Shifting the Balance of Power in the U.S. Health System

The traditional doctor-patient relationship, as often as not, was characterized by a patient with little or no
medical knowledge consulting a fami ly doctor. The doctor was often perceived as nearly omniscient by the
patient. The patientʼs participation in this relationship was generally limited to providing medical-history
information, answering questions and following directions.

Thanks to the Internet and a virtual explosion of readily-accessible information, that is no longer true.
Patients, the consumers of healthcare services, are swift ly becoming active participants in the doctor-
patient relationship. They are using the Internet and other sources for research, encouragement and
information sharing. These empowered consumers are what many are now calling “e-patients.”

The online encyclopedia Wikipedia defines an e-patient as one of a “... new breed of informed health
consumers, using the Internet to gather information about a medical condition of particular interest to
them. The term encompasses both those who seek online guidance for their own ailments and the friends
and family members who go online on their behalf.”

E-Patients, the Internet and Social Media

Perhaps no organization has done as much a s the Pew Internet and American Life Project to identify and
define how e-patients are using the Internet to gather and share information. In 2009, Pew released a
groundbreaking report, “The Social Life of Health Information,” which improved our understanding of why
and how e-patients are going online.

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Pew found that 61% of American adults can be considered e-patients because they use the Internet to ﬁnd
health information. E-patients are not only looking for information for themselves. Pewʼs research indicates
that half of all online health searches are on behalf of someone other than the searcher ― usually a close
friend or relative.

E-patientsʼ online information gathering activities are h aving an impact. 67% of e-patients report that they
discuss the results of their online health searches with others. In addition, although some have worried
that inaccurate online information can be harmful to e-patients, the vast majority report that they were
helped rather than harmed by the content they found.

Regarding social technologies, Pew found that the majority of e-patients are using these tools to gather
information developed by “regular” people. Pewʼs research indicates that:

• 41% of e-patients have read another personʼs commentary about “health or medical
issues on an online news group, Website or blog”
• 24% have checked reviews or “rankings” of practitioners or health care providers
• 24% have checked rankings of medical facilities or hospitals
• 19% have enrolled to “receive news and updates about health or medical issues”
• 13% have listened to “podcast[s] about health or medical issues”

Are E-Patients Creating Content and is Social Media Having an Influence?

Although e-patients are consuming health social media content, very few are creating it. For example,
Pew found that only 5% of e-patients have posted content on a blog or reviewed a physician online.

Pew's resea rch also indicates that e-patients are consuming information posted on social sites. However,
are their health and medical decisions being influenced by what they find? The data are mixed. For
example, according to Pew, 60% of e-patients said health information obtained through Internet research
influences their decisions or actions. In addition, a study published in April 2009 by Ad-ology indicates that
nearly 40% of recent hospital and urgent care patients were inﬂuenced by social media.

On the other hand, a study conducted by the research firm Manhattan Research indicates that very few
e-patients make health or medical decisions based on content they find published on Health 2.0, or social
media sites.

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Health Organizations Board the Social Media Train in Droves, But Are They on Track?

A few years ago, the health industry was largely skeptical of social media, despite that fact that companies
in the entertainment and technology industries were embracing social technologies. Today, although some
remain doubtful about the beneﬁts of these tools, a number of health organizations are using them. Some
notable examples include:

• Government Agencies: The Centers for Disease Control and Prevention and the U.S. Department
of Health and Human Services have used social media to educate the public on the H1N1 flu virus
• Hospitals: According to Ed Bennett, 473 hospitals were using social networking tools as of
November 27, 2009
• Pharmaceutical Companies: Despite significant regulatory and legal restrictions, a number of
pharmaceutical companies have begun to use social networks (such as Facebook and Sermo)
and other sites to deliver information to patients and physicians

Given the growing importance of social media to e-patients, this activity is sure to increase in the weeks
and months ahead. However, while enthusiasm about the communications and marketing potential of
social media is high, some health organizations are not asking critical questions about their planned
activities. Two of the mos t important are:

• How do e-patients feel about us communicating via social media?
• What do they want from us? Do they want us simply “friend” them on Facebook or consistently
deliver substantive and valuable information?

It is important for health organizations to answer these questions while planning and implementing
a social media initiative. Doing so will help them understand:

• Whether their s ocial media marketing communications efforts are starting off in a
position of strength or weakness
• The types of content or interaction e-patients are most likely to ﬁnd valuable
and appropriate

We provide some answers to these questions below.

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In late 2009, the Path of the Blue Eye Project commissioned a nationally (U.S.) representative online
survey of 668 e-patients (margin of error +/- 3.1%) in order to determine:

• How they feel about various types of health organizations communicating with them via
new or social media technologies
• What information and interaction they want from health organizations using social tools
for marketing communications purposes

The results of this study are simultaneously Disadvantaged Drug Companies
intu itive and unexpected. For example, given
the pharmaceutical industryʼs poor reputation, it Drug firms will have to work harder to gain e-patients’
is not surprising that e-patients take a dim view trust when communicating with them via social media.
of their social media communications activities.

However, e-patients from certain communities of color (African Americans and Hispanics) are much
more likely to welcome efforts by drug ﬁrms to communicate via new media technologies.

Please note that throug hout this section of the report we use the terms “social media” and “new media” to
refer to social technologies like wikis, blogs and social networks.

E-Patient Perceptions of Health Organizations’ Social Media Communications Efforts

Overall, 51% of e-patients view efforts by health non-proﬁts or charities to communicate via social media
positively. In addition, 49% applaud government agencies f or turning to new media tools to distribute
information about health topics (see Figure 1).

Numerous public opinion polls indicate that certain sectors of the health industry are not well-regarded.
Large segments of the public distrust pharmaceutical companies and managed care providers. Given
this, it is not surprising that e-patients are less likely to view efforts by these companies to communi cate
via new media technologies positively.

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Only 37% of e-patients think pharmaceutical companies are making the right move by engaging their
stakeholders using new media tools. Although they are unpopular with some segments of the public,
health insurance providers fare better with e-patients. 41% would be likely to welcome social media
communications efforts led by managed care companies.

Figure 1

E-patients that view efforts by certain types of health organizations to communicate via
new media (blogs, social networks, Twitter, etc.) technologies positively
(% of respondents)

Source: The Path of the Blue Eye Project ©2009

Health non-profits or charities 51%

Government agencies focused on health like the CDC 49%

Local or neighborhood hospitals 45%

Nationally recognized hospitals like the Mayo Clinic 44%

Health insurance providers 41%

Pharmaceutical companies 37%

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The picture changes when we look at perceptions of social media communications efforts by gender.
Overall, women are more likely to view social media activities led by health organizations positively –
except when it comes to pharmaceutical companies (see Figure 2).

Figure 2

Male and female e-patients that view health organization efforts to communicate via
new media (blogs, social networks, Twitter, etc.) technologies positively
(% of respondents)


Health non-profits or charities 46% 56%

Government agencies focused on health like the CDC 46% 52%

Local or neighborhood hospitals 40% 49%
Male Female

Nationally recognized hospitals like the Mayo Clinic 39% 48%

Health insurance providers 39% 44%

Pharmaceutical companies 38% 36%

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For example:

• 56% of women versus 46% of men have positive perceptions of social media initiatives led by
health non-profits or charities
• 48% of women versus 39% of men view new media communications efforts by nationally
recognized hospitals like the Mayo Clinic in a positive light
• In contrast, slightly fewer women (36%) than men (38%) would welcome social media efforts
conducted by pharmaceut ical companies

What accounts for the disparity between how women and men perceive health-related new media
communications efforts? One reason may be that female e-patients are more interested in using
new media to build relationships with others and organizations than men (see below for more on
this topic).

The Impact of Age and Race on Perceptions

As was the case with gender, we found that age has an impact on perceptions of health organization
social media activity (see Table 1).

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For example, in general, the younger the e-patient, the more positively they viewed social media
communications efforts. 57% of those between 18 and 24 said they were happy about health non-proﬁts
using social media to communicate (see Table 1).

Figure 3

Black and Hispanic e-patients that view health organization efforts
to communicate via new media (blogs, social networks, Twitter, etc.)
technologies positively
(% of respondents)


Black Hispanic

Health non-profits or charities 54% 60%

Government agencies focused on health like the CDC 55% 51%

Local or neighborhood hospitals 45% 47%

Nationally recognized hospitals like the Mayo Clinic 44% 43%

Health insurance providers 47% 47%

Pharmaceutical companies 46% 44%

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Overall, African Americans and Hispanics felt very positively about health organization social media
communications efforts (see Figure 3).

• 60% of Hispanic e-patients welcomed health non-profit new media activities
• 55% of African Americans viewed government activity in social media positively

Examining Perceptions of Social Media Activity by Pharmaceutical Firms
Drug Companies Favored
In recent years, consultants, p ublic health
experts and others have called upon pharmaceutical African Americans, Hispanics and older e-patients
companies to increase their use of social media are more likely to welcome pharmaceutical
technologies for marketing and communications industry involvement in social media.
purposes. However, drug firms have been
hesitant because of uncertainty about how the U.S. Food and Drug Administration will regulate these
activities. There are also questions about whether e-patients would welcome pharmaceutical industry
involvement on new media sites.

Clearly, a lot depends on how drug firms engage via social media. However, it appears that people in
certain communities of color are more likely to view pharmaceutical industry social media communications
activities positively. Specifically, 46% of African Americans and 44% of Hispanics have this persp ective
(see Figure 4).

These data indicate that pharmaceutical companies may face fewer hurdles when attempting to reach out
to these audiences via social media. Certain conditions like high blood pressure and HIV/AIDS are much
more likely to impact Blacks and Hispanics. Pharmaceutical firms may want to increase their new
media educational and marketing efforts in these areas in order to reach com munities of color.

There is more good news for pharmaceutical companies when it comes to older e-patients (those 55 and
older). This group is especially important to drug firms because they are more likely to take medications for
a range of chronic conditions. In addition, the Pew Internet and American Life Project has found that this
group of e-patients is actively using social media for health and wellness purposes.

Our research indicates that older e-patients are much more likely to view pharmaceutical industry
involvement in social media positively (see Figure 5).

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Figure 4

E-patients that view pharmaceutical company efforts to communicate via
new media (blogs, social networks, Twitter, etc.) technologies positively by race
(% of respondents)


Total U.S. E-Patient Population 37%

Black 46%

Hispanic 44%

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Figure 5

E-patients that view pharmaceutical company efforts to communicate via
new media (blogs, social networks, Twitter, etc.) technologies positively by age group
(% of respondents)



18-24 35%

25-34 34%

35-44 37%

45-54 34%

55+ 42%

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E-Patients Want Information First, Friendship Last

Although sites that enable interaction and friendship like
Just the Facts
Facebook and MySpace have steadily increased in
popularity, research indicates that people primarily go
Most e-patients are not interested in socializing
online to ﬁnd information. According to a study published
with health organizations via new media.
in 2009 by the Online Publishers Association, “Internet
They prefer to receive news and information.
users continue to spend the majority of their time with
content sites.”

In addition, the Pew Internet and American Life Project found that the majority of e-patients use the Internet
to ﬁnd relevant health and medical information. Few engage directly with others on social networking sites
or blogs.

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Given this, it is unsurprising that e-patients want information – not connections – with health organizations
communicating with them using new media technologies. 59% of e-patients want news or information
about medical conditions or diseases.

Only 38% want to communicate directly with the staff of a health organization. In addition, a little over
one-third would like organizations to help th em share information or news with people with a medical
condition or disease (see Figure 6). Older e-patients are even less interested in socializing. 62% say
they prefer to receive news or information via social media (see Table 2).

Figure 6

Types of information or interaction e-patients want from health organizations
communicating via new media (blogs, social networks, Twitter, etc.)
(% of respondents)


News or information about medical conditions or diseases 59%

News or information about medical products, like drugs or surgical procedures 47%

Communicate directly with health organization staff 38%

Consult me for advice about new products or services 37%

Help me share news or information with people with diseases or conditions 35%

Help me share news or information with caregivers 33%

I want health organizations to market to me via online advertisements 12%

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Forging Connections: The Impact of Gender and Race on E-Patient Preferences

Although most e-patients do not want health organizations to facilitate
connections with others, people from communities of color and women are
much more interested. For example:
Women, Hispanics Want Connections
• 37% of female e-patients would like health
Health organizations will find success if they help
organizations to facilitate connections between
women and Hispanic e-patients forge connections
them and people with or caring for someone
with ill consumers via social media.
with a medical condition (see Figure 7)
• Hispanics are extremely interested in sharing information with others with an illness. 51% report
that they want health organizations to help them engage in this activity (see Figure 8)

Figure 7

Types of information or interaction male and female e-patients want from health organizations communicating via
new media (blogs, social networks, Twitter, etc.)
(% of respondents)


News or information about medical conditions or diseases 53% 64%

News or information about medical products, like drugs or surgical procedures 44% 49%

Communicate directly with health organization staff 35% 40%
Male Female

Consult me for advice about new products or services 34% 39%

Help me share news or information with people with diseases or conditions 33% 37%

Help me share news or information with caregivers 28% 37%

I want health organizations to market to me via online advertisements 12% 13%

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Figure 8
Types of information or interaction Black and Hispanic e-patients want from health organizations communicating
via new media (blogs, social networks, Twitter, etc.)
(% of respondents)

Source: The Path of the Blue Eye Project ©2009 Black Hispanic

News or information about medical conditions or diseases 72% 59%

News or information about medical products, like drugs or surgical procedures 56% 49%

Communicate directly with health organization staff 40% 44%

Consult me for advice about new products or services 38% 42%

Help me share news or information with people with diseases or conditions 39% 51%

Help me share news or information with caregivers 36% 38%

I want health organizations to market to me via online advertisements 19% 15%

Are Any E-Patients Interested in Direct Communication via New Media?

Although most e-patients are not very interested in
communicating directly with health organizations, a few Young, Parents Open to
groups are more open to it. For example, 41% of Two-Way Dialogue
e-patient parents want to use new media for one-on-one
communication with a health organization (see Figure 9). Health organizations seeking direct
It is possible they believe these interactions will help engagement with e-patients may want
them access valuable information for their children. to reach out to parents and the young.

Younger e-patie nts are also more open to direct communication. For example, 42% of e-patients between
25-34 would like to speak with health organization staff via new media. In contrast, only 32% of e-patients
55 and older are interested in direct communication with health organizations (see Figure 10).

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Figure 9

E-patients interested in communicating directly with health organization staff
via new media (blogs, social networks, Twitter, etc.) by parental status
(% of respondents)



Parents 41%

Non-Parents 36%

Conclusion: There is No Single Approach to Successful Social Media Communications;
Multicultural Marketing is Not an Option

As this study demonstrates, there is no one-size-ﬁts-all approach to successful social media
communications. Health organizations must engage in careful study of their target audiences in order to
understand the preferences of different demographic groups.

In addition, this study reinforces the fact that multicultural communications is no longer an option for health
organizations. People f rom communities of color are moving from the minority to majority population in a
number of cities across the country.

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In addition, research from Pew and other organizations reveals that they are more likely to use new media
technologies like mobile and social networks than whites. Our research demonstrates that health
organizations from industry segments with reputation issues, or who seek to help facilitate connections
between people, should seriously consider engaging in social media initiatives targeted toward African
American and Hispan ic audiences.

Figure 10
E-patients interested in communicating directly with health organization staff
via new media (blogs, social networks, Twitter, etc.) by age group
(% of respondents)



18-24 43%

25-34 42%

35-44 39%

45-54 38%

55+ 32%

Get More Insight
Learn, communicate and collaborate at Living the Path, our
online community for health marketing communciations pros. A Path of the Blue Eye
Project Publication
http://community.pathoftheblueeye.com
www.pathoftheblueeye.com
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Communicating with the Empowered E-Patient

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