Q&A: Social Media Affects Psoriasis Education, Acceptance

The use of social media continues to grow exponentially, and for many people with psoriasis, platforms such as Twitter and Instagram have become places where they can find information and acceptance.

There are drawbacks to information dissemination via social media, however, and as the number of “skin influencers” continues to grow, it is important physicians are aware of how to best advise their patients in terms of social media use.

Healio Psoriatic Disease spoke with Adam J. Friedman, MD, FAAD, professor and interim chair of dermatology at George Washington University, about how social media can best be used and managed by physicians, as well as how patients can find benefits.

Q: What are your thoughts of how social media is currently being used by physicians in the psoriasis space?

A. I think in the most ideal, pure sense, social media could be a phenomenal vehicle to disseminate key bits of information, hopefully in lay speak, to a much larger audience or population than one could ever do in their own practice. There are only so many patients you can see in a day. Social media can be a great tool to educate the masses. But I think a problem arises with social media in medicine — not just in dermatology, but in medicine overall — because there has been little guidance. It has been like playing catch-up in terms of teaching the medical community how to properly use social media and to figure out what is appropriate and what is not appropriate.

Q: How can social media affect education and acceptance of psoriasis for those with the disease?

A. It starts with acceptance. Psoriasis affects possibly as high as 3.4% of the U.S. population. That is millions of people. When it comes to skin disease, it is very visible. You cannot hide it, and it can be ostracizing. The mere fact of knowing others are experiencing what you are experiencing and being able to communicate with a network can be therapeutic.

We cannot divorce the mind-body connection. When we are stressed or depressed, it can induce inflammation. In diseases such as psoriasis, which will take any opportunity to flare up, it will worsen. Psoriasis itself is also an independent risk factor for psychiatric disease, depression and anxiety. It is this vicious back and forth with one influencing the other and vice versa. Simply knowing others are going through what you are going through is a way to vent to those who understand where you are coming from. Even hearing other people’s experiences, stories, trials and tribulations has some therapeutic potential.

As for education, social media can be used to learn about new treatments, research, clinical trial opportunities and information about comorbidities. Psoriasis is the poster child for dermatologic diseases that are associated with possibly every other medical problem. Hearing about the holistic picture can be helpful. It can help engender lifestyle modifications or changes. For example, we know psoriasis is tied to diet, exercise, smoking and alcohol intake. And on the flip side, there is evidence showing things such as meditation can be helpful. Just learning about these things and following the DIY mentality and culture can lead to patients being able to do things to improve their condition without being under the guise of a physician or practitioner.

Also, hearing about how dermatologists can make a big difference in someone’s disease course can possibly influence others to seek help. It can encourage people to get the help they need and deserve. From that perspective, I think it can play a big role in not just the story line of someone’s care, but the start of care. There is certainly a lot of strength there.

Q: What are some of the drawbacks to social media in the psoriasis realm?

A. First and foremost, misinformation related to drug side effects and what the disease is. One of the hardest things about any inflammatory skin disease, something that is pink/purple and scaly, is that the lay public immediately thinks it is infectious or contagious. That adds to ostracism. Defining the disease inappropriately could certainly be propagated by social media.

Another problem emerges because anyone can be a self-proclaimed expert. Anyone can put out their own two cents about drugs, ingredients and the disease itself. So, the average consumer can certainly be overwhelmed and confused.

Other big issues include recommendations that could be harmful, such as certain diets or supplements, and conflicts of interest. My main concern would be the harmful recommendations. Someone could say, “I bathed in apple cider vinegar for 40 minutes, and it cured my psoriasis,” which is ridiculous, but how is a lay person to argue with that? There is always a glimmer of hope that someone figured something out. One of the best and worst things about the human condition is that we can easily digest something we know in our heart is wrong, but we have hope. And social media is an easy vehicle through which to do that.

This is why I direct individuals to the National Psoriasis Foundation or the American Academy of Dermatology, two organizations that have a major footprint on social media. I think it is important to turn to reputable sources for information. This is a social media-heavy world now. It is important that information that is shared with patients — especially when it has to do with health care and someone’s well-being — is evidence-based, meaningful and inclusive, covering the gamut of all patient populations.

Q: How can health care providers use social media in the best way to help their patients?

A. My perception of this has changed relatively recently. Yes, you can put bullet points and fancy graphics on Instagram and other platforms, but according to research from Sherry Pagoto, PhD, at UConn, the most effective way a physician can transmit this information is by engaging with a nonmedical professional. For example, if you are thinking of hair loss, you can partner with a hair stylist. These professionals have a broader network, and it does not sound didactic. There can be a perception of an academic or physician talking to you and telling you what you need to do and why, whereas when those same messages are transmitted by an influencer, someone in the lay public who is interested in this topic, has a huge following and knows how to engage the right audience, there is a greater uptick in compliance.

There is a lot of divide with these skin influencers who think that physicians are going to be dismissive, and on the flip side, physicians are worried that the wrong information can be transmitted. We should not be taking an all-or-none approach. I think there is an opportunity to work with this rapidly growing population who have built such a huge following and are trying to do the right thing for the community.

That tactic is going to take time, so in the immediate sense, we should keep our messages short, clear and to the point, and they should not directly benefit you. There should be no conflict of interest or COIs should be clearly shared. It should be solely for the purpose of educating a large group of affected individuals to make their lives better.

It also should be ongoing and repeated, not just a one-off. It is an opportunity to share brief messages over time and keep it real and relatable. In my research, the No. 1 thing consumers wanted to see in selecting a dermatologist was before and after photos. This is across the gamut, not just cosmetics, but medical dermatology, too.

Q: Do you have any final thoughts on social media use in psoriasis treatment?

At the end of the day, social media can be phenomenal from so many angles if done correctly. Meaningful use of social media will get the right information out there and bring someone who may feel isolated into a larger network to feel part of a bigger team in managing a life-long disease. Unfortunately, there are people who do not do it the right way, and it can be hard to identify good content from bad content. It would be great if there was a Yelp for influencers, whether he/she be a dermatologist or a skin enthusiast.

For more information:

Adam J. Friedman, MD, FAAD, can be reached at George Washington School of Medicine, and Health Sciences, 2300 Eye Street, NW, Washington, DC 20037; email: ajfriedman@mfa.gwu.edu.