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study how teens use the web to solve #HCSM challenges

On Sunday I got plugged back into one of my favorite things - the #HCSM tweet chat. Somewhere between graduate school, career demands and whatever else life throws at us, I hadn’t spent much time with the HCSM crowd. It was great to get plugged back in to the latest in healthcare and social media thinking.

This week’s chat was full of fresh ideas, new faces and progressive thinking.

But elsewhere - blogs, articles, random tweets - I’m still seeing a lot of concerns around two specific areas: adoption and privacy.

Maybe we should take a hint from how teens think about social networking.

On this week’s episode of This Week in Tech, the panel discusses Vine, Instagram and online messaging in general. They talk about critical mass and the network effect - terms us techie types use to adoption of social media.

Host Leo Laporte points out that teens have no allegiance to one particular platform. Facebook’s done for kids," he says.

It turns out, what teens value is privacy and features, not a particular platform. They move quickly as the landscape changes, with little or no loyalty for a technology brand. What they chase are easier access to friends on a platform their parents haven’t discovered yet.

They flock to apps like Snap Chat for two reasons:

1) It lets them send pictures quickly and easily

2) The app promises the pictures will disappear in a matter of seconds. IE no record exists.

Am I suggesting Snap is HIPAA compliant? Not at all. But maybe studying teen behavior around social media, networking and mobile apps could provide some valuable insight into adoption and privacy challenges with HCSM.


  1. Try new things quickly and follow the trends. You may not send a Vine video to your doctor, but testing new apps and networks may lead to fresh thinking.  You'll at least be ready if there's a ground swell. 
  2. Be agile in your thinking. Being locked in to Facebook and Twitter narrows our thinking. A Facebook page probably won't cure cancer.
  3. Picture a different enemy. Pretend HIPAA isn't the problem, instead its a parent looking over your shoulder. Pretend we aren't worried about law suits, but instead making sure so-and-so's girlfriend shouldn't know so-and-so took whatshisface to a movie last weekend. Would that change how you think about privacy? What solutions shake out that can be applied to healthcare?

Here’s a link to the specific spot in the TWiT conversation. It starts around 0:58:00.

You can watch the full episode here:

How a $4 internet cure saved me from chemotherapy and hundreds of dollars

No seriously. I know what you are thinking… Internet. cure. wack-job.

But I have pictures. I can prove it!

First, a little back story. I’ve had mild psoriasis for years. In my case, it presents as a few areas of dry, flaky skin. At first it was on my elbows and then a few other spots appeared on my legs. It’s annoying, but has been generally controlled with topical steroids.

The problem with topical steroids is they cause skin thinning. The generic ointment ran me about $10 a month.

This, in the grand scheme, is not a major health problem.

But for many, psoriasis can be both chronic and extremely embarrassing. It can form large, red, flaky patches all over one’s body and face. It itches, and can crack and bleed. It is often accompanied by inflammation in joints (which may be present and not felt). For many, P is a major health problem.

The [common treatments][1] for medium to severe P include:

  • Topical steroids
  • Anthralin (a med which affects DNA)
  • Topical retinoids
  • UV light therapy
  • Oral steroids or retinoids
  • Methotrexate - a form of chemotherapy and an autoimmune suppressant.

(You read the last one correctly, chemotherapy!)

Almost two years ago, I developed a persistent patch on my left wrist (interestingly, psoriasis usually presents bilaterally, although I never got any on my right wrist). When I wore a watch or long sleeves, it wasn’t bad. When I didn’t, people asked if I had poison ivy, got scratched by my cat or had otherwise managed to mangle myself.

Still, no big deal.

But I decided to finally go to the dermatologist. On the first visit, they injected several of the small patches on my arms and legs with steroids. For my legs, the injections served as a booster and did great work of clearing the more persistent patches.

When I asked about my arm, it was suggested I think seriously about chemotherapy (Methotrexate).

I told them my goal was to get away from systemic medications and would be interested in what the topical options were. I left with samples for a steroid foam, concentrated vitamin D foam and steroid tape. I was told to watch out for further thinning —my wrist was starting to show signs of long-term steroid contact (which leads to scaring).

The foams were messy and ineffective. The tape, which looks like clear packing tape, is impregnated with steroids and kept things in check. It was $60 a roll and a roll lasts a month.

Now, this is where some readers who know me are rolling their eyes. What about ePatients Nick? What about online communities? What about Dr. Google?!

I know… I know. Actually, I had checked into the P forums on Patients Like Me before. I’d done some basic searching and hadn’t found much of value. I found some people wrapped their affected areas in plastic kitchen wrap to seal the meds in. I tried that. Pain in the rear.

This time I decided to go deeper.

I started on Wikipedia’s psoriasis page where I learned there are several types of psoriasis. I had never been told there were different kinds before. should have looked sooner. Specifically, I learned most of mine was classified as plaque which responds quite well to steroids. Makes sense. I also learned about guttate psoriasis. Those pictures where more like my increasingly pink and nasty left wrist.

So I googled more, this time specifically on guttate P. I found the NIH site and a few others, none of which yielded new info.

Then I got a wild hair…guttate psoriasis home remedy. Nothing. But Google did suggest a similar search: guttate psoriasis treatment. That’s where I found this site. Its not without some challenges. First, it requires users to sign up. And despite the National Psoriasis Foundation branding, it is actually a for-profit organization which hosts sites for national foundations. Something wicked this way comes. But, if you look carefully, you can actually read some of the forum posts behind the sign-up banner.

I saw this post:

I read that a number of people had success applying glycerin USP grade from the drug store on their lesions. It is cheap and non-toxic. I figured, what do I have to lose. I started to apply the glycerin at the end of January …Five weeks after I started this she was 100% clear and she has stayed this way for almost 5 weeks now.

And there were more posts, all about glycerin. I typed guttate psoriasis glycerin into google. More posts, mostly from

I’ve suffered with the effects and treatments of psoriasis all over my body for 40 years and nothing helped. The steroids destroyed my skin and the pills and lotions did nothing at all. Now I finally found something that does what it says and it’s all Natural! The scars and marks from the steroids are vanishing, the red, raised bumps are are gone and all the itching has stopped, I can finally sleep!! I’m so thankful. I would recommend this to anyone who will listen!

Ok, let me get this straight? People on this special site, sponsored or owned or something’ed by the National Psoriasis Foundation have discovered a vegetable sweetener cures psoriasis? Beats chemotherapy!

I tried it.

Day 3:


I didn’t think to take a picture on the first day, we’ll consider this the start. As you can see, my wrist was pretty splotchy and red. It was “in control” from two months of vitamin D foam and steroid tape.

Some of the posts on Inspire suggested they saw dramatic results in a week. After two weeks, I didn’t see much improvement, but decided not to give up. I applied a few drops of a $4 bottle of vegetable glycerin two times a day, diligently.

Day 30:


This might be working.

Day 37:


Virtually gone. In fact, if I hadn’t gotten sunburnt a few days ago, I doubt the photo would show any decreeable redness at all. Unbelievable.

Is this a scientific test? Not exactly, I’m a sample of one. But I did put some controls in place. I applied the glycerin two my left wrist and forearm, and right leg (which had some plaque legions). I did not apply anything to my left leg or right elbow.

Everywhere I applied the glycerin regularly, improved and in many cases disappeared completely. Legions where I did not apply anything stayed the same or worsened.

Cured, by the internet!

Tucked off in the western backwaters of the internet is this amazing resource. There is a whole forum of people who have discovered, somehow, cheap glycerin treats psoriasis better than topical meds, oral meds and chemotherapy.

Why was this information so hard to find? Why is it behind a walled garden?

Why doesn’t my doctor know about this? Or worse, did they know and not tell me?

I’m not sure how to connect these dots, but I am sure of one thing: I’ll search exhaustively from here on out and will be an even louder voice for others to do the same. To reiterate, my case wasn’t bad and I would have lived with it long before I tried chemotherapy. What concerns me is how information like this can be out there and not easily found by patients and, worse, be unknown to doctors.

[1]: “Mayo Clinic Medical Library”