Psoriasis patients use social networks. Here’s why you should care.
Brian Loew
Inspire
Brian Loew of Inspire highlights the importance of online patient discussions in patients with psoriasis.
About 8 in 10 psoriasis patients who use social networks say they do so because they want to learn how others manage their psoriasis and get treatment tips they can’t find anywhere else.
So what?
The psoriasis market is over $4 billion in the US alone, and is projected to grow to over $7 billion by 2020. Psoriasis is an intense, incurable condition, and many patients are highly motivated to improve their health. There are 125 million people worldwide with psoriasis or psoriatic arthritis.
Many psoriasis patients report that their doctors are willing to prescribe treatments that those patients suggest. We have overwhelming evidence that patients talk openly and actively about what treatments they use, how satisfied they are with those treatments, what their unmet needs are, and what new treatments they want to try. A common question asked in social networks is, “Should I switch to one of the new biologics?”
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"Psoriasis is an intense, incurable condition, and many patients are highly motivated to improve their health."
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In short, patients influence one another, compare notes, make suggestions, discuss drug–switching behavior, and report on their experiences, good and bad.
Thus, psoriasis treatment is emblematic of the effects of the the patient-centric movement that we all know is changing patients’ influence on healthcare delivery. If you want to know how billions of psoriasis dollars are going to be spent, you have to engage with psoriasis patients.
A recent study conducted by Inspire, Manhattan Research and the National Psoriasis Foundation, sought to better understand the role played by social networks in the lives of chronic-disease patients. (A survey infographic is here, and a report is here.)
In the TalkPsoriasis community and elsewhere, patients are making peer-to-peer information a key component of their decision making. They are thirsty for clinical information and treatment methods from multiple sources.
One study participant, a 52-year-old woman, wrote, “Getting information (through social networks) is essential when I cannot fully trust the care I get at the doctors. Fifteen minutes is not long enough to discuss at length issues I have.”
A 51-year-old woman said, “Most doctors don't even want to deal with people that have psoriasis because they know there is nothing they can do to help. It's not their fault, that's just the way it is.”
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"...patients influence one another, compare notes, make suggestions, discuss drug-switching behavior, and report on their experiences, good and bad."
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Among survey respondents who said they lacked support from family and friend when it comes to dealing with and managing psoriasis, 48% of respondents said they use online communities regularly on a long-term basis, compared with 31% of surveyed psoriasis patients who said they have that type of family and friend support.
As one 39-year-old woman noted, “Doctors don't understand, my husband doesn't understand, and I certainly don't feel that I can turn to my friends and family for support. This is a very embarrassing disease.”
Another woman said, “Nobody can provide better encouragement or kind words than someone who knows firsthand what it means to have severe and moderated flares.”
Even members who said they had support of family and friends said they placed high value on psoriasis social networks.
“My family doesn't have psoriasis and I don't discuss it with my friends generally, as it isn't visually noticeable,” said one member. “Reading the discussion boards a few times a week keeps me from complaining about stuff at home and just keeps my spirits up in general, because I feel like others understand what I am dealing with.”
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"Even members who said they had support of family and friends said they placed high value on psoriasis social networks."
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A 46-year-old man noted that, to him, the value of social networks lies in being “able to talk to others with the same condition that understand the highs and lows in a psoriasis sufferer’s life.”
There was a time when the only customer you had to think about was the physician. But today, especially for diseases like psoriasis, patients are decision makers. Increasingly, they influence their own treatment, and they influence whether dollars – whatever the source – are spent on your drugs. It’s time to involve patients more.
About the author:
Brian Loew is co-founder and CEO of Inspire, the Princeton, NJ-based patient engagement company. Inspire helps life science organizations connect with patients and caregivers. The National Psoriasis Foundation partners with Inspire on TalkPsoriasis.
What can we learn from online patient discussions?
