e-patients

Apr 07 2012

The Checklist

By admin cancer, e-patients, healthcare industry

This document has its own page on the site as of yesterday, so I thought I’d take advantage of #HAWMC to pimp it toward the e-patient and health activist community. It was debuted during my talk “Dating Tips for Doctors & Patients” for internal medicine grand rounds at Walter Reed/Bethesda Naval Hospital on March 29. I put the Checklist together because (a) I know how much clinicians love a checklist and (b) because, printed front-and-back on one sheet of paper, this document could kick off some great relationships, or repair broken ones, between doctors and patients. Share it, share your thoughts about it. Checklist-for-Clinicians-+-Patients

Apr 06 2012

Haiku. You?

By admin cancer, e-patients, healthcare industry

The brain creates thoughts Yet rarely thinks of itself Un-self-seeing sentience – Cancer cells creep in No light cat’s feet involved here Only crawling death’s hands – Some say health is wealth Yet wealth can be penury If health is absent – Breasts are beautiful Yet can become pure terror At a small cell’s whim – Haiku does not come naturally to me – I tend more to prosaic bursts of thought with much syllabic activity. I do enjoy a challenge, though …

Apr 05 2012

Lighten up. Take flight.

By admin cancer, e-patients, healthcare industry, storytelling

I was almost 11 years old when my brother was born. I’m the one of the three of us (me, middle sis, little bro) who has had the biggest health adventure (cancer) … at least until early March of 2012. One of my favorite memories of my brother as a little boy centers on a few-week stretch of time in the spring of ’69 when he was almost six, and I was about to turn 17. We were living in Coronado, the island village in San Diego Bay, on Alameda Avenue. The kitchen breakfast nook had a window that looked out on the driveway, and mom had put up a hummingbird feeder on the eave next to the window looking to attract some of the flock of hummingbirds that make the island home. We hit the daily double that year. The window sill was about five inches wide. There was an ample source of food – the feeder. A hummingbird pair seeking a perfect nest placement couldn’t do any better than that. We saw the nest at breakfast one morning – a small, perfect bowl for tiny hummingbird eggs – and my brother was riveted. Every morning, he would literally leap out of bed, race to the kitchen, drag a chair toward the window, and look to see if the eggs had hatched. One morning they had. We watched the hummingbird mom feed her chicks, we watched her give them flying lessons – a nail-biter series, trust me – and then we watched them all fly off to start the cycle themselves. Fly, mate, hatch, fly. I had always liked watching hummingbirds. Since that spring, I’ve been in love with watching hummingbirds, because it brought back the memory of a little boy’s joy at watching a story unfold outside his…

Apr 04 2012

Life is 100% fatal. Let’s have fun while we’re here.

By admin e-patients, healthcare industry

Day 4 of #hawmc. Prompt is “I write about my health because … ” I don’t write about just my health because … well, how boring would *that* be? Very. I write about health and healthcare for all of us: me, you, ever’body. Health is our life, it’s what we do, it’s how we behave, it’s how we care for ourselves, it’s how we live life to the fullest. Many of us don’t get a chance to dance, at least not on our own two feet. Many of us don’t get to sing, because we have no voice to raise. Many of us don’t get to laugh, because our ability to see and react/interact is not present for one reason or another. If you can sing, if you can dance, if you can laugh, if you can enjoy a great time over a meal with friends and family … rejoice. Help someone who can’t do any/all of that find some joy if you want to know what “stupendous” feels like. There is one guarantee in life: it’s 100% fatal. None of us gets out of here alive. Be as good to yourself as possible. Help others be as good to themselves as possible. Eat good food, drink clean water, enjoy your body to the extent you can – surfing the North Shore of Oahu or just making it across the room. Whatever your limits are, test them. Stretch. Reach. I write about health because health is life. Healthcare starts within our own heads and hearts. It’s not something that happens “over there” in a healthcare facility. It happens to you every day in how you think about and treat yourself. I write about our health because I want to make a difference, to help drive some positive change within myself…

Apr 01 2012

“There are no guarantees in medicine.”

By admin e-patients, healthcare industry

“There are no guarantees in medicine, other than that there are no guarantees in medicine.” That’s actually my own quote. Today in the WEGO Health #hawmc challenge – 30 days of posts on health activism, one each day in April – the prompt sheet says “Quotation Inspiration”. I’m sharing one of my central tenets, something I say constantly to both clinician and patient audiences. Because there are no guarantees in medicine. There are only great attempts at discovering answers, followed – in most cases – by satisfactory outcomes. It’s not rocket science, but sometimes it *is* brain surgery. Ask yourself how much you expect your healthcare team to do for you. Take a long hard look at what you are willing/able to do for yourself. Both sides of the healthcare equation need to take responsibility for the outcome, and admit when there’s nothing they can or will do to advance the cause.

Mar 27 2012

Is it warm in here?

By admin cancer, e-patients

I’ve been quiet for a while. Been doing my one-armed paper-hanger imitation – in a good way – which has taken up too much of my time and attention. She’s baaaaaaaaack! And she’s almost 4 months overdue for her annual mammogram. Yep, a breast cancer survivor is late for her mammo – but it isn’t due to lack of effort on her part. Here’s the challenge: I have the money in hand for a diagnostic mammogram. However, there is *not* enough money in hand for a specialist visit to order said mammogram. And since your (not so) faithful correspondent here has no health insurance – thank you, cancer, you rat bastard – that’s a wrap. My frustration is magnified by my certain knowledge that the reason the mammogram has to be *ordered* is that said order means that the insurance company will pay for it when it’s billed. Of course, since I have no insurance, that’s why *I’m* paying for the mammogram. But I can’t get a mammogram, since there’s no order for said mammogram to ensure insurance payment for same. Crazy yet? Yep, me too. I’m also totally steamed … which is why it’s warm in here. We have created a healthcare payment system in the US that flies in the face of logic. I’m not the only one who thinks so, either. My buddy e-Patient Dave is banging away at some of the same issues as he tries to be a responsible healthcare customer. I’m on record with what I think are some valid health payment reform suggestions over on Disruptive Women in Health Care. And then there’s the ever-epic Jonathan Rauch article in National Journal that became an also-epic YouTube video exploring the issue “If Air Travel Worked Like Health Care”. All I have to say is … GAH! On both the get-a-mammogram issue,…

Jan 05 2012

I have … great news!

By admin cancer, e-patients, media commentary, technology

My good friend Andrew Spong posted something today on his blog that I took one look at and said, “STEALING THIS!” It’s not really theft if you give 100% credit, though, is it? Andrew talks about his “I have” project, and uses this image to drive the point home: What is the “I have” project, exactly? It’s crowd-sourcing health information in a way that makes it accessible and understandable to someone who’s just heard their name and [insert diagnosis here] in the same sentence. Patients, clinicians, experts of all stripes. That he’s kicking this off with “I have breast cancer” has high impact for me, because I just marked my 4-year breast-cancer-versary yesterday. That original diagnosis day – and before, and since – have been in turn marked by more Google searches than a human could count about breast cancer, oncology, radiation, lymphedema, lymphoma, lumpectomy, hormone suppression therapy, and a partridge in a pear tree. This is incredibly important. I’m not a PhD (Andrew is), so I trust him to kick this off and make it fly. Really. Here are the goals for the project, as he states them: What are the ‘I have’ project’s goals? To offer definitive answers to the question ‘I have [disease state]. What should I do?’ To produce 1 page signpost summaries of the most reliable, relevant, patient-focused, outcomes-oriented, evidence-informed health information available for a wide range of diseases. To publish outputs compiled with SEO best practice in mind to be promoted through social networks and communities in an effective way with the intention that they should appear above the fold on the first page of Google results for the disease they address. Even the best health information is useless if it isn’t discoverable. To harness the expertise of healthcare professionals, patients and curators in co-creating and sharing the…

Nov 30 2011

Mobile medicine: movable feast or meaningless motion?

By admin e-patients, healthcare industry, media commentary, politics, technology

The concept of mobile health and mobile medicine is enticing. “There’s an app for that” when applied to managing a chronic condition like diabetes, or navigating cancer treatment, sounds like real 21st century healthcare, doesn’t it? Tomorrow (Dec. 1, 2011) I’m on a panel that’s part of mHealthCon at Rutgers University, a conference where a plethora of mobile app developers and thought leaders will be talking both the idea and the practical app of mobile in healthcare. Our panel is self-described as the American Idol judges – I’m Simon, including the scowl potential – and we’re expected to give meaningful and frank feedback to the app developers that are in the session preceding us. Leading the conversation will be my buddy Bob Brooks of WEGO Health, and sitting with me in judgement will be Amy Gurowitz (who’s gonna channel either J-Lo or Ellen, she hasn’t decided yet) of MS-OL and MS SoftServe, as well as the founder of Divabetic, Max Szadek (he’s Paula). The challenges that mobile health development face were summed up brilliantly by Dr. Kenny Linn in a post on the US News health blog: Apps have … advantages over traditional medical texts. The information is always current, whereas many textbooks are already dated by the time they hit shelves. If I have a question, I can look up the answer on my smartphone without leaving my patient’s side. But smartphone apps also have downsides—despite their enormous potential to improve the quality and convenience of healthcare. While textbooks undergo rigorous review by experts, apps vary in quality and don’t have to be vetted for accuracy or safety. That point was driven home to me recently when a colleague shared a nifty app she’d downloaded that acted as a mobile electrocardiogram (ECG) monitor: Just place your finger tip on the smartphone’s camera, and your heart rate and electrical rhythm appear on screen. Visions of chucking…

Nov 22 2011

Things that make you go “thanks”

By admin e-patients, media commentary, politics

Let’s not be turkeys this Thanksgiving. Let’s not start fights with the relatives while we’re together for the weekend. Don’t let it matter that someone voted for Obama, or is backing Newt. Let it ride that somebody’s a Dallas Cowboys fan (that’s work for me) or passionate about defending Penn State (it’s a great school, with a great history). Accept the fact that Aunt [whoever] will always bring the thing you absolutely hate to eat. Put a teaspoonful on your plate, and suck it up. Or hide it under some mashed potatoes. Surrender to the idea that, at Thanksgiving, we are brought together to be thankful. Here’s my list: My family, who I love to death (even if sometimes one or the other of you will get on my last nerve) My friends, who are from all points of the globe and give me hope that I’ll visit each and every one of you (promise? threat? you decide.) My customers, who have kept me afloat in some really interesting-in-the-Chinese-curse-way times (divorce + cancer = challenging fiscal cocktail. Trust me on that one.) My healthcare team, who kept (and keep) me firmly planted on the planet (they all help me find the funny) A short list, but it’s got some serious meat on its gratitude-fueled bones. What are you grateful for this year? Be grateful for too much turkey, if you’ve got that. Be grateful for annoying family, because it means you’re not alone. Be grateful for living in a free country, if you do – if you don’t, you can earn the undying gratitude of your community by driving an Arab Spring within your borders. Be grateful that you’re alive. I have studied history, and the human race is at a point where we can learn to link together in…

Nov 15 2011

DNA: it’s not just for cop shows any more

By admin e-patients, healthcare industry, media commentary, politics

“It’s in my DNA.” You hear people say that all the time about something they love to do, a passion, an attitude. There are things that actually are in your DNA that could save you money, and even save your life. Those things are the P-450 enzymes CYP-2C19, CYP-2C6, CYP-2D9 – pay attention, there’ll be a test later – which can predict your response to a wide array of drugs. Statins, blood thinners, anti-anxiety meds, anti-fungals, anti-depressants, antihistamines, beta blockers, and more – in all, about 50% of the pharmaceutical menu. So why isn’t this being offered at every doctor’s office and pharmacy throughout the land? I’ve asked this question in arenas as diverse as women’s health events and healthcare industry conferences, and have gotten a combination of responses: Really? Physicians don’t know enough about it. Patients don’t know about it. Does insurance cover it? The answers to those, in order: Yes. Here’s a link. Here’s another link. Yes. On the insurance question: even if you don’t have insurance, the test itself only costs about $400. And you only have to have it done once. Unless you wind up in a Fukushima-level radiation accident or have massive radiation treatment for cancer. A question: why isn’t pharma, which is so good at saying “ask your doctor about [insert name-brand drug here],” trumpeting DNA drug-response testing? That approach wouldn’t impact their bottom line negatively, even if it works out that some patients need less of the standard dosage of a drug. Because there will be plenty of cases where the standard dose of that same drug won’t be enough for someone else. Another question: why aren’t health insurers pushing this? They can save money with wider use of DNA drug-response testing, because over- and under-medicating leads to poor outcomes. If you get more of a blood thinning drug than you…