Psoriasis Social Media Trends

PsoriasisSocial Media TrendsA study from Inspire and Manhattan Research

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Psoriasis is the most prevalent autoimmune disease in the United States, afflicting an estimated seven and a half million people. Depending on the severity and location of the disease, psoriasis can cause both extreme physical discomfort in patients as well as psychological issues, especially in social and dating scenarios.

Healthcare market research and strategic advisory firm Manhattan Research and online patient community network, Inspire, partnered on a study to explore the role of social media in the lives of psoriasis patients. The study was conducted online among 317 psoriasis patients from the Inspire/National Psoriasis Foundation’s TalkPsoriasis community (http://www.inspire.com/groups/talk-psoriasis) in Q2 2012.

“Psoriasis is a serious disease that impacts the individual physically, socially, financially, and psychologically. The more that people with psoriasis are able to connect with others and find support through platforms like social media, the less isolating the disease can be.”—Catie Coman, Vice President of Marketing Communications at the National Psoriasis Foundation

Key questions explored in the research include —

To what extent are psoriasis patients incorporating social media into their lives, and for what reasons are they using it?

How do older and younger patients differ in their use of social media?

Does psoriasis severity and perceived support from others affect social media reliance?

Health social media landscape

Additionally, research shows that consumers are at least open to, if not in favor of pharma’s participation in social media. According to Manhattan Research’s ePharma Consumer® study, 42 percent of online consumers (and 48 percent of online psoriasis patients) agree that pharmaceutical companies should be involved in online health communities for consumers.

“The National Psoriasis Foundation was an early adopter of social media. We founded the NPF online patient community nearly 10 years ago and it continues to be very active. TalkPsoriasis receives nearly 1 million unique visitors each year who come to the site in search of connection, information, and support.”

—Catie Coman, Vice President of Marketing and Communications at the National Psoriasis Foundation

Source: Manhattan Research, Cybercitizen Health® U.S. 2007-2012

2007

38

2008

63

2010

89

2011

107

2012

109

In millions of U.S. adults (ages 18+)

Social health adoptionAdoption of health-related social media

Consumer adoption of health-related user-generated content has grown steadily over recent years as this type of media has become more integrated into the consumer experience online.

Overview of surveyed respondents

What is your gender?What is your gender?

29.3%70.7%

Plaquepsoriasis

72.9% 8.8% 4.4% 2.5% 0.9% 10.4%

Gluttatepsoriasis

Pustularpsoriasis

Inversepsoriasis

Erythrodermicpsoriasis

Other type of psoriasis

Which type of psoriasiswere you diagnosed with?

Among surveyed psoriasis patients from the TalkPsoriasis community

Overview of surveyed respondents

How severe is your psoriasis, or that of the person you care for?

NotSure

Mild

Moderate

Severe

3.5%

30.9%

46.4%

19.2%

How severe is your psoriasis?

No — there have been no flare-ups in the past three months

Yes — there has been a flare-up in the past three months

Have you, or the person you care for, had a psoriasis flare-up in the past three months?

17.7%

NO82.3%YES

Have you had a psoriasis flare-up in the past three months?


To what extent are psoriasis patients incorporating social media into their lives, and for which reasons are they using it?

Surveyed psoriasis patients are avid users of both general and psoriasis-related social media, with 70 percent of this audience using any type of online community, social network, message board, or blog at least several times per week, and 44 percent using psoriasis-specific social media multiple times per week.

6.9%Several times

per day

16.7%Several times

per week

15.1%A few times

a month

12%A few times

a year

20.5%About once

a day

13.2%About once

a week

8.8%A few times

a month

3.2%A few times

a year3.5%

Never

How often do you use onlinecommunities, social networks,

message boards, or blogs for information and support

related to psoriasis?



Once surveyed psoriasis patients sign up for a community, they tend to remain engaged with it. More than two-thirds of this audience uses psoriasis-related communities regularly on a long-term basis after joining, and another quarter turn to communities when a medical situation, such as a flare-up, occurs. In contrast, only 13 percent say they rarely return to these types of communities after initially signing up.

“They let me speak to others who suffer from the same problem as I do, they make me feel better about my condition, and they provide insight from other sufferers who have tried similar treatments and can provide firsthand feedback on what works for them and what might help me.”

—Surveyed psoriasis patient

Thinking of your use of online communities and networks for information and support related to psoriasis, which statement best describes you?

After I initially sign up for a community…

I rarely returnto use it6.0%

12.9%

22.4%

24.6%

34.1% I use it regularly for a few weeks but then stop or only use it rarely

I only use it when a medical situation occurs (such as a flare-up related to psoriasis)

I use it regularly ona long-term basis

Other

Thinking of your use of online communities and networks for information and support related to psoriasis, which statement best describes you?

After I initially sign up for a community...

“Q17: You mentioned you regularly use at least one online community for information and support related to psoriasis. Why do you regularly use these websites — what value do they provide to you?”



Surveyed psoriasis patients tend to rely on communities more for practical advice related to their disease rather than emotional support. About 8 in 10 say they used psoriasis social media because they wanted to read how others managed the disease as well as to get tips and ideas that they couldn’t find elsewhere.

I wanted to readhow others have

managed a conditionor treatment regimen

I think others can give me tips and ideas I cannot find elsewhere

I wanted to find differing opinions about a health issueor treatment option

I wanted to see how other people rate or review a prescription drug

I wanted to connect with others for emotional support

I came acrossthese websites

when I was usinga search engine

Other

84.5% 77.6% 65.9%

45.5%

60.6%

28.1% 4.1%

Which of the following reasons describe why you use online communities, social networks, message boards, or blogs related to psoriasis?



While surveyed psoriasis patients are considerably engaged in social media, the data indicates that there is a limit to how many active social profiles/personas one can maintain online. Less than one-third of this audience regularly visits more than one online community or network for information and support for their disease.

6+online communities or networks

More than 2Online communities or networks

1online communities or networks

[TalkPsoriasis]

How many online communities or networks do you belong to for information and support related to psoriasis?


How do older and younger psoriasis patients differ in their use of social media?

While younger psoriasis patients are more frequent users of social media in general, older psoriasis patients are more frequent users of psoriasis-related social media.

Psoriasis patients 13-44

Several times per day

About once a day

Several times per week

About once per week

A few times a month

About once per month

A few times per year

About once per year

Never4.0% 2.6%6.0%

19.0%7.8%

16.4%12.1%

16.9%14.7%

5.2%

1.5%8.0%

9.5%14.4%

13.9%16.4%

23.9%8.0%

Psoriasis patients 45+

How often do you use online communities, social networks, message boards, or blogs for information and support related to psoriasis?

How often do you use online communities, social networks, message boards, or blogs for information and support related to psoriasis?



After initially signing up for a community, older psoriasis patients are more likely to use them regularly on a long-term basis, while younger psoriasis patients are more likely to use them only when prompted by a medical situation.

31%

13.8%I rarely return to use it

I use it regularly for a few weeksbut then stop or only use it rarely

I only use it when a medicalsituation occurs(such as a flare up

related to psoriasis)

26.7%

20.9%

12.4%I rarely return to use it

I use it regularly for a few weeks but then stop or only use it rarely

I only use it when a medical situation occurs (such as a flare up related to psoriasis)

39.8%I use it regularly on a long-term basis

7%Other

19.9%

Patients 13-44 Patients 45+

24.1%I use it regularly on a long-term basis

4.3%Other

Thinking of your use of online communities and networks for information and support related to psoriasis, which statement best describes you? After I initially

sign up for a community...

Thinking of your use of online communities and networks for information and support related to psoriasis, which

statement best describes you? After I initially sign up for a community...



“It’s important to have a support system. I know others are suffering with the same thing I am, so don’t feel all alone in your fight. You learn about products and treatments that you may have not known of before.”


Patients 13-44

Patients 45+

Other

5.5%

1.7%

77.6%77.6%

64.7%68.1%

63.2%56.0%

40.3%54.3%

29.9%25.0%

82.1%88.8%I wanted to read how others

have managed a condition or treatment regimen

I think others can give me tips and ideas I

cannot find elsewhere

I wanted to find differing opinions about a health

issue or treatment option

I wanted to see how other people rate or review a

prescription drug

I wanted to connect with others for emotional support

I came across these websites when I was

using a search engine


Younger psoriasis patients feel they have more family support than their older counterparts, however younger psoriasis patients are more apt to seek emotional support from psoriasis social media.

“Q17: You mentioned you regularly use at least one online community for information and support related to psoriasis. Why do you regularly use these websites — what value do they provide to you?”



Moderate to severe psoriasis patients are involved in more psoriasis social networks than mild psoriasis patients. Thirty-five percent of surveyed moderate to severe psoriasis patients belong to more than one online community or social network for psoriasis, compared with just 15 percent of surveyed mild psoriasis patients.

MildModerate to severe

1 (TalkPsoriasis) 2 to 5


34.7%

65.3%

14.8%

85.2%




Moderate to severe psoriasis patients are more apt to rely on psoriasis user-generated content for emotional support than their counterparts suffering from mild forms of psoriasis. Half of surveyed moderate to severe psoriasis patients say they use psoriasis social media for connecting with others for emotional support, compared with one-third of surveyed mild psoriasis patients.


I wanted to read how others have manageda condition or treatment regimen

82.0% 85.3%I think others can give me tips and ideas

I cannot find elsewhere

70.5% 79.2%I wanted to find differing opinions about

a health issue or treatment option

59.0% 67.8%

I wanted to see how other people rate or review a prescription drug

47.5% 64.1%I wanted to connect with others for

emotional support

32.8% 48.2%I came across these websites when

I was using a search engine

27.9% 26.5%

Other

4.9% 4.1%

Mild Mod to Sev

?


“When I could not leave my house because of the severity of my disease, it provided a link to the outside world.”


“Q20: You mentioned that online communities and social networks are essential resources to you when it comes to dealing with and managing psoriasis. Can you please describe why you feel this way?”



Lack of support from family and friends drives use of social media to an extent. Among surveyed psoriasis patients who disagree they have lots of support from family and friends when it comes to dealing with and managing psoriasis, half say they use psoriasis online communities regularly on a long-term basis, compared with just under one-third of surveyed psoriasis patients who agree they have this type of support.

Agrees with having lots of support from family and friendsDisagrees with having lots of support from family and friends

I rarely return to use it

I use it regularly for a few weeks but then stop or only

use it rarely

I only use it when a medical situation occurs (such as a

flare up related to psoriasis)

I use it regularly on a long-term basis

Other

12.0%12.1%

26.0%24.9%

8.0%28.9%

48.0%31.2%

6.0%2.9%

“Because you basically feel all alone with your disease and desperate for information and to talk with others who understand what you are going through and to share information. It has become the new ’support group’ for many of us.”


“While my family is an excellent support group, they just don’t understand. I can connect with other Ps sufferers online. I can also get some alternative relief suggestions that I can try in between Dr. appointments.”






Manhattan Research (www.manhattanresearch.com), a Decision Resources Group company, conducts annual research studies covering digital health trends among healthcare professionals and consumers in the Americas, Europe, and Asia.

Topics covered in Manhattan Research’s consumer studies include:

Consumer research can also be segmented to gain insights for key patient categories. For more information, please contact [email protected].

n Technology profile and digital behaviorsn Health touch points and a resources mix, including pharmacists and retailersn Influence of digital on health decisionsn Internet reliance throughout the patient journeyn Health-related social media and online health videon Smartphone and tablet health activitiesn Remote health monitoring and patient portalsn Online prescription drug information seekingn Role of pharma at the point of caren Demand for online pharma resources and support services

About Manhattan Research

Princeton, NJ-based Inspire creates safe, moderated online communities, organized by medical condition, for patients to share information and to support each other. Inspire builds and manages these communities in partnership with more than 80 national patient advocacy and support organizations. Among the organizations are the National Osteoporosis Foundation, the Ovarian Cancer National Alliance, and the Asthma and Allergy Foundation of America. For more information, go to http://corp.inspire.com or call us at 800/945-0381.

The National Psoriasis Foundation (NPF) is a non-profit, voluntary health agency dedicated to finding a cure for psoriasis and psoriatic arthritis and eliminating their devastating effects through research, advocacy and education.

Ignite Health ranks among the top healthcare agencies and was a finalist in 2011 for Med Ad News’ Agency of the Year. With offices in Irvine, Calif., and New York City, Ignite Health offers clients a broad range of fundamental best practices and digital excellence to create unstoppable momentum for brand success across the continuum of a brand’s lifecycle. Ignite Health is an inVentiv Health company. For more information, visit ignitehealth.com.

About Inspire

About the National Psoriasis Foundation

About Ignite Health

Health & Medicine

Psoriasis Social Media Trends