Tag Archives: medical system

Hack your celiac! (This new app, CeliacCare, might help.)

You may have noticed there are a few things I hate about celiac disease. For example, how long it takes doctors to figure us out. The amount of time we spend lost in the logistical maze of insurance claims, referrals, and screwups. The premium we shell out to feel safe, and how long it can take to get better no matter how safe we’re trying to be. I could go on, and I bet you could, too.

Although there’s plenty of good stuff to say about having this particular disease, with its primarily dietary treatment, during what will no doubt go down in history as the golden age of gluten-free, there’s a lot that could be better. Some doctors’ standard of care for the newly diagnosed still consists of this:

. . . leaving patients unsure where to begin and what, if any, followup care they need. With luck, they stumble across good sources of information, but the less fortunate get mired in muck.

The word “hack” has come to mean finding a clever solution to a tricky problem—and living with celiac disease is definitely that. So, can we hack it? Is there, perhaps, an app for that? In fact, Clay Williams (who I met at the Columbia conference I attended) is about to launch one. It’s called CeliacCare, and Clay was kind enough to answer a few of my burning questions about it.

What is CeliacCare, and why should we be excited about it?

CeliacCare is an application that provides support for the full set of activities someone living with celiac disease needs to undertake to manage the disease and maintain good health. The app helps patients manage the day-to-day aspects of the disease, and ensures they are connected to and supported by their doctors and dietitians.

CeliacCare helps you manage celiac disease through four broad components, which are available on both the mobile app and in the patient portal.

appScreenLearn lets you stay abreast of new information about celiac disease and its treatment. This section includes curated material from a variety of celiac disease sources, as well as information that your doctor and dietitian can share with you directly. The information is richly tagged, so you can easily find the latest info on a given topic.

Eat helps you maintain a resource list of favorite things you like to eat, find new gluten-free recipes that are aligned with both your dietary preferences and other sensitivities, and find places to eat out. Our search engine even allows you to locate recipes based on your mood or your desire for a particular food. So, if you’re a bit stressed and you’re craving something crunchy, we can find something yummy for you! We also provide a food diary to help you plan meals and keep track of what you’ve been eating. You may not want to keep a diary all of the time, but making it easy to track things when you need to keep a closer eye on your diet is one of our key goals.

Monitor allows you to keep track of any symptoms you have. Experience has shown that patients who are asked, “How are you feeling?” often answer based on their experience over just the past few days. If you see a doctor or dietitian only once or twice a year, they may not get the whole picture. Tracking and sharing symptoms with a doctor or dietitian will give them a much clearer view of the symptom history of your disease. While the app makes it easy to report a symptom on your own, a particularly novel feature of the app is the ability for a doctor or dietitian to provide special monitoring assistance by running a protocol. When a protocol is run for you, you will automatically receive occasional in-app notifications containing questions or messages from your doctor/dietitian. These assist you in tracking important information that helps them to understand your day-to-day state better.

Care assists in planning visits to your doctor or dietitian. An important aspect of celiac disease management is ensuring you have an ongoing connection with those providing you care. Because your visits may be infrequent, it’s important that you cover everything necessary to maintain good health. Our application automatically provides you a completely personalized agenda for your visit—based on your current disease status, your symptoms, your food diary, and topics that you have added on your own.

CeliacCare is the first app to come out of your company Cohere Health Technologies. Why did you decide to start with celiac disease?

It was the alignment of two different factors. First, I have two friends who have celiac disease, so I’ve seen their challenges firsthand. Second, we had a partner in the recipe space who wanted to address conditions that had a dietary component, and celiac is a good starting point, because gluten is a known culprit. It seemed like the perfect starting point to build capabilities that will both help people with celiac disease and provide a basis to address other dietary issues and sensitivities.

Will CeliacCare also be useful for people with non-celiac gluten sensitivity?

Yes! Features like the sophisticated recipe search, the symptom logging, and the learning areas are broadly applicable. If people with gluten sensitivity are seeing a doctor or dietitian, the care planning feature is also quite helpful.

Some hospitals have systems that allow online communication between patients and doctors (for example, I use Weill Cornell Connect). Do you see CeliacCare as a complement to these systems or a replacement for them?

We are complementary to these systems, and we have designed our platform to make it easy to share information with and receive information from other electronic health technologies. Ultimately, the win for patients is for us to provide novel capabilities that integrate in positive ways with other tools in the healthcare ecosystem.

“Fragmentation” of medical care is annoying. I go to one doctor who says, “You should talk to X doctor about this,” but that doctor says, “It’s more a question for your Y doctor,” who in turn directs me to Dr. Z. Is this app going to help fix that?

This is indeed an annoying issue, and unfortunately isn’t an easy one to solve in a single step. However, Cohere Health is hoping to help with this and other issues of care coordination. The starting point is to get you and all your health-care providers on the same page. Our disease-specific applications are a significant step in this direction. An even more challenging issue is to get doctors who are treating different conditions to coordinate care. A rising percentage of the population is contending with more than one chronic condition. At Cohere Health, we are working to provide an integrated experience when people are using multiple of our applications that are addressing care for different conditions. Through this integration, we will provide a seamless set of capabilities that are personalized to an individual’s specific health challenges.

According to your Cohere site, you plan to “glean useful insights for chronic disease treatment from a variety of health data sources, including [your] apps.” Should people who use CeliacCare have any privacy concerns?

No. Our goal is to build the most patient-friendly application possible, and this means two things. First, CeliacCare is fully HIPAA compliant, meaning your data is encrypted during both transmission and storage, and cannot be shared without your permission. Second, your data belongs to you, meaning that only you decide whether you want it available to medical professionals who might gain insights from it, whether you want to opt out of sharing at any point, or if you want to fully remove it from our system at any time.

When can we get the app? On what devices?

We plan to launch mid-summer on both iOS (Apple) and Android devices. The app will be available in the Apple App Store and on Google Play. You can sign up at www.CeliacCare.com to be notified when it comes out.

Very important: what are your personal favorite gluten-free foods?

I grew up on a farm, and we always had a garden in the summer, so I am a huge fruit and vegetable hound. I like almost every kind of fruit or vegetable, but summertime brings up thoughts of watermelon. When I was about eight years old, my dad was one of the largest growers of watermelon in the nation, and I’ve always thought they tasted like summer. A favorite recipe involving watermelon, cheese, and fresh herbs is available here.

Readers, Clay has some questions for you, too—he’s inviting patients and docs to give feedback to help make the app the best it can be. Check out the website to share your thoughts, and feel free to share a few of them here, too. Do you use any health-related apps already? What clever means have you devised to hack your celiac?

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Don’t waste my time! (On “patient autonomy” and health insurance)

If there’s one thing that makes my blood boil, it’s having my time wasted. I only have so much, and I waste enough of it myself that I really can’t afford to lose any to others’ incompetence.

Unfortunately, one of many frustrations that come with a chronic illness is wasted time. Managing celiac disease takes a fairly large toll on your time in the form of food research and preparation—though that’s, arguably, time valuably spent rather than wasted. Far more annoying, really, is dealing with doctors.

I, for example, have an HMO (health maintenance organization) insurance plan. The main difference between that and a PPO (preferred provider organization) plan is having to be referred by a primary care physician (PCP) in order to see a specialist. Even a specialist specializing in the chronic condition I will have for the rest of my life.

Researchers have actually felt the need—and gotten funding—to study the benefits of long-term follow-up care for celiac disease patients. Turns out (surprise!) it’s good for us. (See, e.g., this article in the Canada Journal of Gastroenterology.)

Judging from that, for the rest of my life, or at least the next few years, I should see a celiac disease specialist now and again. So can’t I just have a standing referral?

No.

Instead, before I can see my gastroenterologist to try to find out why I still feel crappy after over a year of being as carefully gluten-free as can be, I have to:

  1. call my PCP’s office
  2. wait on hold
  3. talk with a receptionist who seems determined not to understand what I’m asking for or help me to get it
  4. wait nearly a week for a return phone call
  5. follow up myself
  6. learn they need me to supply the doctor’s ID number (whether they were planning to ever, oh, call me for that information, or why they couldn’t ask me for it the first time I called, I do not know)
  7. tell them the ID number
  8. be advised to see my primary care doctor about whether I need to see the specialist
  9. snap that I have a chronic condition that my doctor already knows about
  10. feel bad for losing my temper
  11. agree to wait several days more for them to put through the referral
  12. and then and only then, finally, make the appointment with the specialist I already saw a year ago, who we all know I need to see.

I understand Oxford wants me to get referrals rather than run around willy-nilly to specialists and expect insurance to pay for it. They don’t trust me to know who to see, and why should they? Most people are idiots, and I haven’t proven to them that I’m not.

But wouldn’t it be nice if I could?

Look, I’ve been SAT tutoring for a while now, and if there’s one thing SAT tutoring will do, it’s turn everyone involved off of standardized tests. But some tests are necessary proving grounds or barriers to entry. No one wants people behind the wheel who haven’t passed a driving test, right?

So what if there were a test for basic medical common sense? Since “the prevailing ethical mantra in medicine” is supposedly patient autonomy (scoff), we could call it the PAT (Patient Autonomy Test). Those who passed could be trusted to refer themselves to specialists.

Insurance companies should be on board with this—after all, if I wind up needing to see a specialist, they lose money by making me see another doctor first to get the go-ahead. With the PAT, we all save money (and time).

Questions might include:

What kind of doctor should you see if you have a lifelong disease primarily affecting your gastrointestinal tract?

a) a gastroenterologist
b) a podiatrist
c) a cardiologist
d) none of the above

In your opinion, specialists and specialized medical tests and procedures are:

a) fun toys to enjoy at a whim
b) resources to turn to under specific, necessary circumstances
c) both

Are you:

a) a child
b) an adult capable of rational thought
c) a complete idiot
d) really struggling with these test questions

A quick reading comprehension portion on a passage describing recommended follow-up care for a specific condition could come next. And then a section on triangles, because—as my SAT students could tell you—that’s stuff we all really need to know.

bubbling an answer on standardized test with pencil

Don’t make any stray marks, now.
Photo © biologycorner | Flickr

What time wasters get your blood pressure up? And do you daydream about patient autonomy, too?

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When is your health like a plugin? – On diagnosis, technical difficulties, and Band-Aids

Is there anything more annoying than technical difficulties? Technology is meant to quietly smooth the course of our daily existence; it’s a fact of life that we take for granted—even ignore entirely—until it starts to go wrong.

Well, maybe one thing: health problems. A healthy body is similar to working technology: it’s a neutral backdrop to our activities, a nonintrusive vessel for our thoughts and cares and aspirations. No one rejoices in their eyesight till they start to lose it. No one revels in their ability to sleep until insomnia strikes. No one praises their guts for breaking down food until the guts themselves break down. I certainly never realized how healthy I was until, one day, I wasn’t.

Once difficulties begin—with our technology or our health—we realize how essential its function was to our former happiness. And so begins the search for solutions. Step one? Diagnosis.

laptop keyboard and stethoscope

What seems to be the problem?
Photo © jfcherry | Flickr

The first definition of diagnosis, according to good ole Merriam & Webster, is “the art or act of identifying a disease from its signs and symptoms” (and for a good read on the “art” of diagnosis, I highly recommend Every Patient Tells a Story, by Lisa Sanders). But the third definition, “investigation or analysis of the cause or nature of a condition, situation, or problem,” is applicable to technology. That’s why you’ll hear IT people toss around the terrifying phrase “running diagnostics.”

Over the Christmas break, I moved my little baby gluten blog from WordPress.com to a self-hosted site, with some pro bono help from my computer-programming big brother. Although I like the freedom that gives me to, oh, throw affiliate links at you (not that I have, yet), there’ve been growing pains: I’ve had to diagnose and fix several technical issues since the transition.

With a self-hosted blog, you’re the one responsible when problems strike. You’re the patient and the primary care physician. Unfortunately, in my case, you’re a rather bumbling one who looks everything up on Google. The most you can hope for is to pinpoint the general source of the problem and refer yourself to the right specialists.

My latest “symptom,” as some of you are aware, arose this week. Several of my old posts—from June, September, and October 2013—were resent to my subscribers. Everyone who said anything about it was very nice—thank you!—but I felt bad about the spam.

Putting on my doctor hat (is that a thing?), I determined the problem was with Jetpack, the plugin that brought all my old subscribers to my new site without their having to resubscribe, which has been overall handy. A “Happiness Engineer” from their support team let me know they were looking into the problem. In the meantime, I could stop the emails by deactivating the plugin.

band-aid on finger, laptop trackpad

I’m also familiar with real Band-aids on my real fingers. I should not be allowed near sharp kitchen implements.
Photo © Tony Kwintera | Flickr

This type of solution—“We don’t know what’s wrong, but here’s a Band-Aid to get you by”—is depressingly familiar to me from my years with a diagnosis of IBS and, unfortunately, continues to be familiar. “Issues that haven’t gone away after nearly a year gluten-free could be connected with celiac disease; they don’t seem to be connected with anything else; and it might help if I try . . .,” etc.

I obediently applied my blog Band-Aid and emailed subscribers that the problem was fixed. Almost immediately, of course, the “deactivated” plugin emailed out yet another post (the robots really are coming for us). That’s familiar, too. Band-Aid remedies don’t work when there’s a deeper, undiagnosed problem.

Eventually, I received another email from Jetpack: “We’ve now fixed the issue. . . . Sorry again for the inconvenience.” Why it’s fixed, or what went wrong in the first place, I can’t say. My blog doctor clearly subscribes to Sigmund Freud’s belief that “The doctor should be opaque to his patients and, like a mirror, should show them nothing but what is shown to him.”

(Note: the word diagnosis derives from diagnoskein, meaning “to know thoroughly.” Generally it’s not just the doctor who gets to know. But Freud’s been wrong before.)

Lego doctor with laptop

The blog doctor will see you now (but you won’t see him).
Photo © Jay Reed | Flickr

Opacity aside, a diagnosis was apparently made, because the fix is in. Subscribers should—fingers crossed—be able to expect no more unwanted emails from my blog (which is why you should subscribe now, if you haven’t yet!).

Granted, if we sustain the health analogy, this is a bit like saying, “The doctors say I won’t keep projectile vomiting at random times without any warning, so you should be able to sit with me at lunch,” but once we’re discussing vomit I’d say it’s time to drop the metaphor, wouldn’t you?

Tell me—which do you find more frustrating: diagnosing health problems, or diagnosing technical problems? Do you find people take their good health for granted? And what’s all this about doctors being mirrors?

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Stress Test

By now, I think just about everyone I know has shared this New Yorker comic with me:

david-sipress-it-s-a-simple-stress-test-i-do-your-blood-work-send-it-to-the-lab-and-nOkay, fine, it was only about five people, but I still find that significant. Of all the New Yorker comics that exist and of all the neurotic people that could jump to mind upon seeing them, this comic puts my friends and family in mind of me.

Fair.

Recently, I watched the movie Romantics Anonymous (Les émotifs anonymes) with a friend. (The movie is very sweet, and French, and available on Netflix, so if you’re into romances about socially anxious people and chocolate, check it out.) In it, a character claimed that the three most stressful situations in life are moving, weddings, and exams.

My friend wondered, “Are exams really that stressful?”

I said, “Maybe he means medical exams.”

She replied, “You would say that.”

Also fair.

Recently I underwent a new medical exam of my own, and alongside it my usual trio of Stressing, Obsessing, and Second-guessing (yes, that’s SOS for short).

In advance: I stressed over whether I was following the preparation diet properly. I went online the day before—never wise—and found prep instructions from other doctors that included instructions mine hadn’t, all of which it was too late to implement. I stressed over how my change in routine for the day of the test would affect me for the rest of the week. I stressed over getting another diagnosis. I stressed over not getting another diagnosis.

On the day of: I stressed about whether my doctor’s office was properly handling the referral and billing process for my insurance (with good reason, turns out). I stressed about whether I was blowing the right way into the breath tester thingamabob. I stressed about the fact that midway into the test the receptionist realized she’d overlooked a detail about my insurance.

Properly dealing with this detail, I learned, would involve time travel. I stressed about not knowing how to time travel.

For the rest of the week: I continued to stress about the insurance, making phone calls to two different doctor’s offices and to the insurance company and not knowing what to say once I got on the phone with any of them.

To one, I said, helplessly, “I feel like the middleman here; I don’t know what I’m talking about,” to which she replied, “You are the middleman. You’re the patient!” I also said, to the same receptionist, “I’m only twenty-three!” Poor thing, she had no idea she was in for an impromptu counseling session, but she handled it well. Maybe twenty-three isn’t that young, considering in some places and times I’d have several children by now and be managing a household. Be that as it may, it’s true: I had no idea what I was doing. And it was stressful.

When I got the results: I compared my chart to others online and stressed over whether my doctor had gotten the diagnosis right. Those graphs don’t look the same! I thought. The peaks aren’t right! I stressed about taking a potentially unnecessary antibiotic. I stressed about my insurance’s prescription coverage. I read studies, second-guessed my doctor’s choice of antibiotic, then worried that I wouldn’t hear back from the pharmaceutical company before the weekend to learn whether my new tablets were gluten-free.

Now: The test is over! All I have left to stress about is whether I’m taking my antibiotics with enough time before and after meals and between doses and with enough water and without lying down within the next 10 minutes—why is that?—and without forgetting a dose. I’ve woken up several mornings convinced I’d forgotten to take it the day before (no wonder I’m having nightmares).

Oh, and if all that’s not enough and I feel myself entering stress withdrawal, I can always stress about whether or not any of this will do me any good.

Or about how stressed I am.

Tell me how you deal with stress, and your thoughts on the top three most stressful situations in life. Do you too Stress, Obsess, and Second-guess?

If you’re looking for more on medical stress tests, the fine ladies behind Breaking Up With Captain Crunch and Sassy Celiac have both written hilariously about their colonoscopies—fun!

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