iPatchman Blog Has Moved!

Please check out iPatchman's new blog here:
www.ipatchman.com

Thanks,
~iPatchMan

Using DropBox as your Personal Health Record (PHR)

Much has been said about the amazing new uses one can find for their DropBox. From setting yourself free from the risk of losing your USB thumb drive and effortlessly syncing and backing up your photos, to “15 Awesome Dropbox Tips and Tricks,” DropBox has found many uses for the free 2GB of cloud storage. One new use that is emerging is that of a Personal Health Record, or PHR. The Obama administration is investing billions in electronic health records and many startup companies are hoping to get part of that stimulus by creating PHR and other electronic health records (HER) systems. Google, Microsoft and Dossia have emerged as leaders in the PHR/HER arena with their Google Health and Microsoft HealthVault. These tools synch with many other online health sites like Livestrong’s Calorie and workout tracker or your local pharmacy. However, you still have to spend the time scanning and uploading doctors’ notes and test results into your online account. Personally I feel that if I am already scanning all paper notes and test results into my computer, I want to have more direct and personal control over them. With DropBox I can easily place all PDF versions of my medical records into folders for each provider. The files sync automatically with DropBox and I can access them from any computer in the world as well as my iPhone (through the DropBox app). It is not 100% clear if storing your medical records in DropBox is HIPPA compliant. It looks like most of the requirements have been met but an argument can be made that one requirement is still missing is private keys, so that the DropBox team does not have access to the files if you need support. Either way, for personal use, one does not need to follow HIPPA, rather only if your provider wanted to use DropBox as your EHR might they run into problems. Still, this does not mean you cannot share your medical records with physicians, as it would be similar to using email to forward a note or test result. For now, and for lack of a better option, I find it very easy to use DropBox as my PHR and to have access to all my medical records on the go, and no matter where I go.

Working as a spy for a secret agency; Decoding Healthcare’s Elusive Prescription Dilemma

The man in the cloak hands me a small piece of blue paper with an unidentified scribble on it filled with code names and numbers. “Quick,” he says, “ go give this to the man in the little window in the corner store on 102^nd and Broadway and wait for further instructions,” says the cloaked man and sends me on my way. Without looking at the note, I fold it twice and place it in my back pocket and hurry over to the drop-off location.

I enter discreetly into the dimly lit store and look around me. “If I hurry, I can make it to the small window without getting noticed,” I think to myself, and hurry down the aisle. “Can I help you?” says an unfriendly and tired looking face from behind the small widow. Without thinking twice I hand him the small folded piece of paper with the secret code. “Hmm,” says the man. “Come back in twenty minutes, and don’t be late!”

I run off, and hide on a bench around the corner, I feel faint, hot and lightheaded, worrying and thinking about the outcome of this drop off. Twenty minutes later, I am standing again in front of the man, sweating and shaking. The man hands me a small vial and whispers to me: “Take three drops of this twice a day for week.” I take the vial from his hand, and garner the courage to ask the frightening man “and the note I gave you? What did it say?”

“That is not your concern,” says the man, as he shuts the small window door.

I walk off silently and ponder this whole clandestine transaction I involved myself in. “Is there another way?” I ask.

Stephen Wilkins, MPH, the Author of the blog Mind the Gap states that research has shown that “36% of patients did not know the name of the medication they were given, 36% of patients did not know what the new medication was supposed to do, and 44% did not know the proper dosage instructions for the new medication.”

These are amazing findings, on their own, but this points to another problem, one that is in the process of filling the script in the first place. We do not know what is written on the “small piece of blue paper with a unidentified scribble” and do not get a copy of it back from the pharmacist, so we do not know whether it was filled correctly.

Three months ago, after having corrective eye surgery, I filled a script for glasses with a prism. I am still suffering from double vision, and these glasses were meant to help me see one picture. My doctor took the time to explain to me the purpose of the prism glasses. The prism was to be placed on the right lens and allow the two pictures I am seeing to be fused into one. The script said the following: “OD, PLANO, sph, 2.0 Up and 4.0 Out”. After waiting two weeks to the script to be filled, I excitedly took the glasses home for a test run. I put them on my head and watched a TV show, trying all the time to fuse the pictures together. After no success, I took the glasses off for a closer look. To my surprise, the prism lens was placed on my left lens, and not the right. Confused, I referenced the copy I made of the script before filling it (yes, I do that!). I entered “OD, PLANO, sph, 2.0 Up and 4.0 Out” into Google, and came up with the Wikipedia entry explaining it. I was not crazy, they incorrectly filled the script placing the lens on the wrong eye. I wonder how often this happens with eye glasses.

A similar mistake happened to me a month ago when I filled a new drug script at Duane Read. I was filling a drug that required me to take 5MG twice a day. When getting my prescription back I looked at the dosage which said 10MG twice a way. Not only was this twice the dosage I was prescribed, but it would have at the very least caused me serious side effects. I asked the pharmacist to look up my script again to see if this was a mistake, and of course it was. “Come back in twenty minutes,” I was told and they fixed the mistake.

I wonder, how often this happens, and why we let the pharmacist and the physicians hold all the cards. Why don’t we demand a clear explanation of the drugs we are given, and a copy of the script for our records? Anyone who knows me knows that I am a very experienced health consumer. I have to be after all these years. I also happen to have a Masters in Health Policy and Management from Columbia University. I am also kind of obsessed with pharmacies (mostly Rite Aid). So it comes as no surprise that I am capable of catching most of the mistakes that arise from this unfair asymmetric information system of filling prescriptions.

But what about the rest of the world, what about you?

Brain Tumor and Cancer Patients Deserve to be Treated as Individuals:

Revolutionizing the Doctor-Patient Relationship: Reclaiming Patient Individuality

Brain tumor and cancer patients deserve to be treated as individuals. It is time to revolutionize the patient-healthcare provider relationships! It is time to change the way we think about agency in the healthcare setting. It is time to speak out and say “I am not a factor, I am not a variable!”


In October 2005, four months after being diagnosed with an “inoperable” brain tumor in my brainstem, I was sitting in the examination room of the radiation oncology department of Montefiore Hospital. The nurse asked me the usual questions you get asked when you have a brain tumor, and then went on with a very detailed explanation of what I will be going through:

“First, we will be preparing a mask based on your head and face and the exact location of the tumor. It will then take a week or so to prepare the computer program that will allow the radiation oncologists to give the correct dosage to the exact location every time you come in. You will come in five days a week for seven weeks. Each time we will place the mask we programmed on your face and you will need to stay still . . .”

This went on for several more minutes while they took me around to see the radiation machine and sat me down to create the mask. I could not stop thinking of Dr. K’s promise, that he would be able to help me. He will use his magic radiation machine to stop this growth inside my brain, even shrink it. Despite hearing over and over again from countless experts that radiation does not work on pilocytic astrocytoma tumors, and despite the research, I was hopeful. What other reason would Dr. K have to promise me that radiation would work, what other reason would he hug my crying mother last Friday and comfort her?

“. . . oh, and one last thing,” said the nurse. “We need to tattoo your head and face with three dots.”

“What, what, what??” my cartoonish imagination immediately replied in my head. I saw myself spitting out water in surprise to this nurse’s matter-of-fact statement that I will have to have permanent tattoos done on my head. Was she not as optimistic as I was that I will have a normal life after this? Did she know something that I did not know?

“You have nothing to worry about, it does not hurt much, and two of the dots will be close to your hair line. Only one will be in the middle of your far head, but it is very small.”

Why did they need to “violate” me in order to make sure that the mask and radiation dosage that is going to “save my life” is in the exact same place each time?

“Is there another way?” I asked. But I knew the answer, why would there be another way, in an office, where patients only walk in scared for their life; no one asks these questions.

Patients, in general, are afraid to ask too many questions. And cancer patients going into treatments that are supposed to save their lives are afraid to mess up their treatment in any way. Last year, I was giving advice to a friend who was diagnosed with breast cancer, and she asked me: “Akiva. Tell me, am I allowed to ask questions?” She was terrified as it was from the cancer, and asking the doctor questions seemed like a scary act. “Of course,” I said, “you should ALWAYS ask all the questions you have, and make sure you are comfortable with the course of treatment they offer you.”

Healthcare providers are not used to having patients “rock the boat” with questions and requests that might require them to change their system. Years of management consulting firms creating operations management processes and flow charts for hospitals and practices, have created a well oiled machine in most hospitals; Best practices, and Six Sigma Black belts have taken over healthcare and perfected the system. The patient is part of the flow chart, and must fit into the box in order to be treated.

These systems have improved the healthcare experience and made the delivery of care more efficient while lowering cost. However, these practices have also, at times, turned the patient into a factor, part of an equation in a flow chart that needs to play out.

Patients are not a factor. We are not a variable that needs to be placed in a box in order for the care to be provided. We are individuals, that need to be treated individually, and we need to be entirely comfortable with the treatment plan in order for it to work.

“I don’t really want a tattoo, is there any other way?” I asked.

“Not really. Don’t worry, it is very small, it will barely show,” the nurse responded.

“Are you sure? Can you ask the doctor? He never mentioned anything about a tattoo.”

“We do this to everyone, there is no other way,” the nurse said.

I paused for a second, thinking of all the times in my youth that I pulled the religious card to get out of things in high school and the Army: morning runs, kitchen duty, etc . . .“ Was I really going to pull it here? “Really Akiva, are you going to pull the religion card for radiation therapy?” I heard my father’s voice in my head.

“Um, I am Jewish” I said. “We are not allowed to get any tattoos. If we do we cannot be buried in a Jewish Cemetery” I announced (a claim that is not entirely true).

“I will check with the doctor,” the nurse said, and went out of the room.

No one wants to mess with religion in this country.

“Ok, no tattoo, we will use a permanent marker for you,” she said, amazed herself how easy an alternative solution could be.

“Thank you,” I replied and lay down on the examination table, closed my eyes, and praised the gods of Sharpie® for saving me.

The Man Behind The Patch

A couple of weeks ago I received an email from a concerned parent of a young girl who wears an eye patch. Recently she had been encountering people who made fun of her eye patch. In responding to her, I felt an urge to post the email here, hoping it would reach other children like her. Feel free to comment at the end. Thanks, iPatchMan.

Hi [Concerned Mother] and Group,

I am glad my name was in the subject line, so it got my attention. I am sorry to hear that your daughter is having some trouble with kids at school. I cannot imagine how it would have been back as a kid to go through all of this.

If I could sit down with your daughter I would tell her that I understand a little bit of what she’s going through right now. Having worn an eye patch for the last 4 ½ years myself, I know how much of an adjustment it is – for the person wearing it and the people who encounter it. That said, I believe wearing the eye patch has been a source of strength for me and I hope in telling you my story that your daughter may find some inspiration.

I tend to write long emails, so please bear with me.

I had my JPA at age 25, while a senior in college. You can read more about my story here: www.ipatchman.com. After a successful surgery, I was affected with nerve damage which caused paralysis in my right eye and facial muscles. As a result, I saw double and used an eye patch to cover my right eye. Nevertheless, it was hard for me to face my new reality as a pirate and deal with everyone else’s looks. The way I have dealt with wearing an iPatch (that is my way of writing it, makes it cool like an apple product) is by owning the look and owning the persona. I get the question all the time, why are you wearing an iPatch (I am happy when I get it, cause it is better than stares, and much better than no stares at all!). I have a whole arsenal of answers, everything from “I was abducted by pirates when I was young” to “remember when your mom told you not to run with a scissors in your hand? Well, DON’T run with a scissors in your hand!”. I cannot go around without little kids saying “mommy, mommy, look! It’s a PIRATE!” while their little faces glow (once I even got called a captain which brought me more honor then I deserved). And of course there were the fears of job searching and dating and just being accepted. Own your Ability is what I always say (disabilities mean nothing to me). I created a whole super hero in my mind, called iPatchMan (he even has his own Facebook account www.facebook.com/iPatchMan), and turned him into my sidekick. My first birthday party after surgery was an iPatch Party. Everyone had to come with an iPatch on, and there was an iPatch cake made that looked like an iPatch! I mixed this party with my first Annual iPatch Design contest where all who wanted to could submit an iPatch that they designed (I have since had a party like that and a design contest every year, more about that later). People had the best time seeing through my “eye” for two hours and experiencing what it’s like to wear an iPatch. I became THE iPatchMan on campus, and everyone knew me (it is really hard to forget someone with an iPatch). Turns out it was not bad for job hunting as recruiters always remember you from school networking events, and you leave an impression in interviews (I now work at one of the top consulting firms in NYC as a Healthcare Consultant to Fortune 500 firms). It worked out not bad in the dating scene and I met my wife Amanda in my last semester at Columbia and we got married this past August. At my last iPatch Party, Amanda got a ton of arts and crafts supplies from Michael’s and had an iPatch Design Table at the party itself. It brought everyone back to 2^nd grade, and everyone loved it, making iPatches for the contest at the party. Since my surgery I have been dedicated to the cause and have been active at the Children’s Brain Tumor Foundation, mentoring young adult survivors and teens and heading their volunteer core (and for the past year serving on the board of directors of CBTF).

Most of the time when I am asked about my eye, I answer the truth, I say “I had brain surgery.” It seems to have just as powerful an effect. I always tell folk at CBTF that the kids who have gone through all this when they were young are the real superheroes. I admire them, as they learned to be strong at such a young age.

Recently I have been having trouble with my eye. Since I do not blink, my eye is very dry, and my cornea has begun to break apart. I aggressively lubricate my eye, but I can no longer sustain it that way. I have finally come to the conclusion (last week actually) that it is time to listen to the doctors and have a gold weight put in my lid. Since I was going to have surgery, I decided to talk again to a doctor who does the eye muscle surgery as well (been pushing that off for 4.5 years, since I have been perfectly content with my iPatch). Two things triggered my new interest in the eye muscle surgery. The first was a friend who had a JPA at age 25 that I had referred to my brain surgeon and who later on had the eye surgery successfully and was able to recover his bi-noculer vision. And second, I paid $16 to see Avatar in 3D and could not understand why I had to put on sunglasses to watch the Smurfs. Needless to say I cannot see 3D!

So I have decided to schedule my surgery to fix my eye lid and my eye muscle in one month from today. But that is not the end of the story. I have been having long discussions with Amanda about what this means for me, for iPatchMan and for everything I have created over the past 4.5 years. You see, I feel that in some ways, I have become iPatchMan! HE is the leading character in this TV show, and I cannot just go and kill him off. What about my website, blog, the news articles, the essays, dozens of iPatch designs, my iPatch Parties and Cakes, my T-Shirts, my iPatch business cards! And what about all those kids at CBTF who know me as the Volunteer with the iPatch, what about all those young adults I have told never to be ashamed of having brain surgery and to own their abilities? What about the people at work and the friends I have made over the past 4.5 years who know me no other way? What about me? Turns out I have100 more times the fear about taking off the patch then I had that first day I put it on!

In the end, I am still Akiva but will always be iPatchMan. It was not the iPatch that did all this but me. Yes, it was the tool I used to cope with having brain surgery and getting all my abilities. It was the way I chose to express myself and to feel like I am normal (how I decided It was normal to wear an iPtach is a question for my future therapist). But we all find our ways to cope and surround ourselves with the people who give us support and help us through it. I surrounded myself with a community who accepted me for who I was both despite and for the patch. And that was key to accepting who I was in the end.

The majority of kids will learn to accept your daughter for who she is and with or without her patch. And she can tell the jokes, or the real story to the ones that ask, but if they do not accept it then, I guess she might have to eventually tell them to “walk the plank.” But hopefully she never has too.

I hope this was helpful in some way, Please do not hesitate at all to contact me with any questions or comments. I would love to hear from you.

Yours truly,

iPatchMan