There are many references to “iPatch” now online, both on Facebook, YouTube and other social media. Ever since the iPhone and iPad came out, iPatch has become a pop culture reference. A good example can be seen in the latest viral clip TWEET IT where they reference an iPatch:
Please do remember that I had coined the terms iPatch and iPatchman back in December 2005, 2 years before the iPhone came out (based on the iPod if anyone remembers what that is), and I have been having these Design Contents since November 2006.
Follow the link below and read what happens when A Wedding, Bar Mitzvah and Brain Surgery get mixed up in Julie Gruenbaum Fax’s Cyberstalking Akiva and the Kippah Snafu
It is hard to believe that it has been five years since the day I was diagnosed with a pediatric brain tumor. I leaped off the cliff and had brain surgery at age 25 and I still struggle daily with the after-effects. Nevertheless, I remain hopeful and resolute in my decision to survive and live a long and happy life. Over the course of these years, I have found great fulfillment with my involvement with the Children’s Brain Tumor Foundation (CBTF), and have the honor of serving on the foundation’s board.
By overcominga a dire brain tumor prognosis, I came out stronger and deeply committed to help others who need it most. Every day nine families across America learn their child has a brain or spinal cord tumor, but only six will transition to survivorship. Pediatric brain and spinal cord tumors remain the toughest children’s disease. These kids often endure not only intense surgical procedures but also extensive chemotherapy and radiation treatments. Not only does this disease often confine children and parents to long hospitals stays, it also greatly impacts the life of their entire family.
This year, for the 22nd time, the Children’s Brain Tumor Foundation has reserved the Big Apple Circus on Sunday, October 24th so the children and families we serve- and you– can join us for a fun and laughter-filled afternoon. Please join us in making this CBTF day at the circus, the 22nd Annual, unforgettable! We need your help in reaching our goal of raising $150,000 to recognize this important milestone.
A day at the Big Apple Circus offers a welcome reprieve for children and families. It’s an opportunity for them to enjoy a day of cheerful fun and entertainment with other kids and families dealing with the same disease and its after-affects. What’s more wonderful than a child wide-eyed at the sight of clowns and circus animals in the center ring?
Your sponsorship of a child or a whole family will make this day a memorable one for hundreds of children and families. Proceeds will also support other quality-of-life programs we provide for children and families including education and research.
I want you and your family to join the fun! You can sponsora child or family and order your tickets too.
This blog post has been featured on the healthcare social media blog Health2Social and has been re-posted here.
A recent WSJ Health Blog post titled “Unraveling Why Patients Don’t Take Their Meds?” argues that one reason patients stop taking their medications is the negative side effects they may experience. The post mentions some astonishing reasons for the lack of drug compliance. The blog mentioned that a recent study by the New England Healthcare Institute (NEHI), which brought together experts on patient medication adherence found that “there are many reasons besides side effects that patients don’t take their medicine: cost, the challenge of managing multiple prescriptions, cultural issues, forgetfulness and a reduced sense of urgency if they don’t feel any symptoms.” The article also mentioned that “an estimated one half to one-third of Americans don’t take their medications as prescribed by their doctors . . . contributing to about $290 billion a year in avoidable medical spending including excess hospitalizations.”
I find this quite amazing to believe. I agree that negative side effects may be the main reason patients stop their medications, but this, and the other reasons listed seem to be only dwarfed by the bigger issue. As I had mentioned in a previous post: Working as a spy for a secret agency; Decoding Healthcare’s Elusive Prescription Dilemma, trying to read your prescription and figure out what one is taking, what dosage, and why, is like trying to decode a secret message between the doctor and pharmacist.
Yes, all the reasons motioned above are true, but most of them can be solved by better patient education, more time spent with the patient encouraging Q&A, and a clearer prescription system that is inclusive of the patient, rather than secretive and exclusive. Only by educating patients and encouraging their questions, can doctors provide their patients with the tools to take control of their own health. As Thomas Goetz, executive editor of Wired Magazine, and author of The Decision Tree, points out over and over in his book, being in control of your health actually increases your health (as seen from the British Whitehall Study from 1967). If physicians empowered their patients by education and clear communication, patients would feel more control over their health, thereby leading to better health outcomes.
The WSJ post does mention that “simplified drug regimens, better patient education and closer monitoring of patients on medication by case managers” are part of the proposed solutions. I think these are great proposals, and a better use of those $290 billion wasted should go to compensating primary care providers to spend more time education the patient, including them in the prescribing process, and following up with their patients on drug regiments.
Another solution is to create a more social aspect of medication compliance. As noted from the wildly successful Weight Watchers program, mainly as a result of the social network aspect (support groups, similar to AA meetings). We at Health2Social would like to see more socially engaged programs related to medication adherence. If patients agree to sign off on a medical release, physicians can connect them with others who have the same diagnosis and are on similar medications. You then can create everything from a buddy system to actual support groups (moderated by a healthcare provider) to enhance the overall engagements in one’s health, and increase adherence.
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 missingis 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.
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 102nd 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?
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.
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 iPatchParty. Everyone had to come with an iPatch on, and there was an iPatchcake made that looked like an iPatch! I mixed this party with my first AnnualiPatchDesign 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 2nd 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.
Thank you for all that participated in the designing of the eye patches, this year’s designs were really creative, and I already got to wear some of them around and received great responses (the CyborgPatch went over really well at 1020).
The winner this year contest was Inabl Weinberg, my old army body and very talented set designer. Her red velvet Austen Powers’ pimpPatch, along with her formal corsagePatch were really artistic and fun. Last year Inbal’s Jackson Pollok iPatch came in 2nd place, and you can tell she had her eye on 1st place ever since.
2nd place award went to Yasmine Soffer for her remarkable and original Eye-iPatch. And exact replica of my real eye printed to create an optical illusion while wearing the patch. Yasmine definitely gets the originality award on this one. I can’t wait to wear it to interviews.
Lastly, 3rd place went to my sweet love, Amanda Jaffe, who knew exactly how to please my secret urge to be a rock star with her red snakeskin iPatch.
I stood at the edge of the cliff. Looking down I could see nothing by the mist far below.
“He will be back soon” I thought to myself.
“I have no other choice but to jump.”
So I did.
I fell for what felt like an eternity. Anyone who has fallen before knows that there is no real sense of time on the way down. I had a lot of time to think while my weightless body drifted down towards the abyss. It had been months since I first met Fear. He came disguised as a doctor I had met in Jerusalem. Nice old fellow with a gray beard, told me I was special, told me I was different. Fear has many disguises.
As I flew upside-down towards the bottom I remembered the next time I met Fear. This time I did not see him, but I could feel his presence. He sent shivers down spine, and I could feel his electrifying touch on my left arm. A feeling that stayed with me forever. But Fear, he went away.
I sent him away; I banished him and exiled him into darkness. “Leave now and never come back” I shouted as he glided down the dark hall. “Leave NOW and NEVER come back” I commanded him. And he left. But then he came back.
Before I jumped I felt his presence one last time. I stood with my back to the cliff, staring at my parents and siblings as they glared back at me from the distance. He was among them. I could see it in their eyes. I said nothing. Fear had no power over me, and after I jump, he will leave them alone. Or so I thought. As I looked at my family and Fear one last time, I smiled my last full smile at him, a sign of victory. But before I could turn around to jump, he looked straight at me with half a grin on his face, and that glance stayed with me forever. I jumped, and I knew he jumped after me.
I hit the ground quite hard, much harder than I expected. They never really tell you how the ground feels beyond the mist. They do not know, they have never been here. For a while I was disoriented. But then I felt the straps lay upon me and tighten as they fastened me to the ground. I was now alone, Fear was beside me, and I was too weak to resist him. He tortured me for days, maybe weeks; he sent agents and visions that are too bloodcurdling to talk about yet. But he had no power over me; I had already banished him before. As I got stronger, I felt him get weaker, as I broke away from my restraints he started to flee, and as I started to walk, he started to run. That is last I saw of him.
Two years have passed, and there has been no sign of him. From time to time he sends his minions at me, but I send them back with a shrug. They cannot hurt me now; now that I’ve discovered my ability. Lately I’ve met others like me who were told they were special. Individuals who jumped off the cliff when they were only kids. Heroes who had to expel Fear at a much younger age then I did. Heroes stronger then I can ever imagine, each with their own unique ability. We form an alliance, a team of champions, dedicated to keep Fear away from others who are special like us. Together we stand at the bottom of the abyss and put out our hand to those who arrive. We smile at them as they get to their feet, and ask:
“What’s your ability?”
I will face Fear again in the end. We will all face him in the end. We will meet at the cliff as old advisories, old friends. He will approach me silently, and I will stare him right in the eye. I will not flinch when he faces me with his half a grin. I will return his glance with a big full smile and turn around for the last time and jump into the abyss.
