Category Archives: Technology

On Technology and the Patient with Chronic Illness

Posted on by
6

While saving a podcast I created for my students the other day, I inadvertently clicked on another item in my iTunes folder: my daughter’s first cry, recorded with my husband’s iPhone the moment she was born.

Momentarily overwhelmed with emotion, I scrolled through until I found another amazing entry: the sound of her hiccupping in utero, recorded with my iPhone during one of the many non-stress tests I had during my pregnancy. You hear the whoosh and thump of her heartbeat, and then every few seconds, you hear this unmistakable blip that is a hiccup.

An entry from a few months later makes my body clench: the horrifying sound of her struggling to breathe, rasping and gasping and choking and wheezing, when she was quite sick as a young infant. I played it for her new specialist so he could see what I meant when I talked about how much she struggled at night and while eating.

He nodded, playing it over several times, and sharing it with the fellow on his rotation. “I am so glad you recorded this,” he said to me, relaying any private fears of mine I’d look like some overly paranoid first-time mother. It was the first step in accurately identifying some of her health problems and getting her the right treatment.

My smart phone is just one of many ways technology has changed my experience of being a patient, being a pregnant patient, and being the mother of a patient. I get text messages from my pharmacy when it’s time to refill my prescription, and can accomplish more over brief e-mail exchanges with my own specialist than I do in some office visits. The patient health management platform my hospital uses has all lab results, imaging, results letters, and medical history available with a few clicks on a password-protected site.

I’ve written here before how social media is an important—and often, the only—source for connecting with other rare disease patients, people who can provide the anecdotal information on treatments and best practices that can make such a difference, information that we can use to have conversations with our physicians. It’s another form of data, and in the digital world of health information, data matters more and more.

I’ve been writing and researching in a lot more depth the way technology and social media have influenced patient-hood, and I know this post is just a snapshot glimpse of the many, many types of application. But as someone immersed in the research and the statistics, what I would really love to hear more about are the everyday experiences people have.

So tell me, how do you use technology to manage illness? How have technology and social media influenced your experiences as a patient? How you advocate for yourself or find information?

Summer Reading…

Posted on by
4

Nothing says Independence Day quite like the Law and Order SVU marathon. With my long weekend vacation plans derailed by an acute infection (where do I keep catching these things, anyway?), I ditched the sandy shores of Cape Cod for my living room couch and settled in for the one-two punch of the nebulizer and Benson and Stabler cracking meaty cases.

However, my revised weekend plans also gave me a lot of time to feed my habit as a news junkie, and I came across some stories I had to share.

I recently wrote about the promise of research in terms of better treatments and improved outcomes, so I was particularly excited to read these new developments. This Boston Globe article discusses cutting-edge nanotechnology that allows scientists to detect cancer cells in patients’ blood, which could mean more targeted treatment and less side effects.

According to the article, “The technology, invented at Massachusetts General Hospital, uses a microchip scanner no bigger than a business card to analyze a patient’s blood, hunting for stray cells shed by tumors. The device is so powerful that it can detect a single cancer cell among 1 billion healthy blood cells.”

Another Globe article—this one’s hot off the presses, in today’s edition—reports that scientists have linked 32 genes to Crohn’s disease, a serious autoimmune disorder that affects the GI system. While genome research is often used to help determine the risk of developing certain diseases, this type of information is a powerful use of research with huge implications for patients. As the article posits, figuring out what goes wrong in certain diseases will help experts design more effective treatments:

“I would say Crohn’s disease has proved the paradigm,” said Dr. Francis S. Collins, outgoing director of the National Human Genome Research Institute. “Namely, that by studying the genetic factors involved in a complicated disease, you can shine bright light on its causes that you never could have achieved any other way.”

***

In preparation for a ReachMD radio interview I’m doing, I’ve been thinking a lot about the doctor-patient relationship. I’ve had some truly amazing doctors and nurse practitioners—compassionate, insightful, dedicated, and creative people. I’ve also had the opposite, of course, and those are the relationships I’ve abandoned. As such, I found this New York Times piece fascinating—in this case, it’s the doctor who ends the relationship because he cannot work with the pediatric patient’s difficult (and noncompliant) mother. Check it out and see if you agree.

Speaking of the New York Times, I’ve enjoyed past entries about writing and illness in Tara-Parker Pope’s “Well” column. If you’re interested in the power of expressive writing, here’s another good read from her column, this time about poetry and cancer.

Enjoy!

What’s In a Treatment…

Posted on by
4

Earlier this week, I was fortunate to attend an event at Fenway Park (can’t ask for a better setting than that!) benefiting and celebrating the neuroscience department at BIDMC. On so many levels, it was a wonderful evening. I got to chat with one of my favorite medbloggers and BIDMC CEO, I met a fascinating and highly acclaimed memoirist, and spoke with all kinds of people doing creative things in health care.

The most exhilarating part of the evening was learning about the innovative research and treatments these doctors are working on, and the atmosphere of collaboration and care for the patient that guides it. Whether it was discussing yoga and dance therapy for Parkinson’s patients, hearing patients talk about stroke rehabilitation, or learning how noninvasive techniques can help patients with a variety of conditions, it was impossible not to feel the energy and potential gathered in that room.

You don’t need to be a neurology patient or even the friend or family member of one to appreciate these types of advancements. In fact, the idea that if given the appropriate time, resources, and environment researchers can get closer to developing more refined, targeted, and effective innovations for diseases is one that stretches across many disciplines.

By pure coincidence, I also stumbled across this Slate article, “Old Drugs, New Tricks” this week. Writer Darshak Sanghavi points out that in some of the major fields of medicine—like pediatric oncology, or cardiovascular disease—some of the most significant strides in increasing patient survival rates came from refining existing older drug therapies, rather than aggressively hyped new medications. Of course he points out cases where brand new drugs have made enormous (and unexpected) gains for patients, but his central point is a compelling one, and his thoughts about why some specialties are better equipped for the long-term, rigorous studies that make such refinement possible make a lot of sense.

As someone with multiple conditions of varying degrees of severity and treatment options, I find myself in an interesting position within this debate. When I was diagnosed with PCD and bronchiectasis a few years ago, my treatment regimen changed in many ways. While I had pretty much lived on steroids and all kinds of inhalers for most of my life (and spending weeks each year in the hospital and getting worse with each trip shows how well that worked out for me), I switched over to a system of rotating strong antibiotics. I still use inhalers and my nebulizer, but the steroids are no longer the first line of treatment. I also started daily chest physiotherapy, and that has made such a difference in my quality of life.

I mention all this because for me, some of the biggest improvements in my quality of life, and even my survival, are tried and true therapies. (This isn’t to say that some of my antibiotics aren’t newer generation, or that the vest I use when I can’t get chest PT isn’t a more modern version of the very physical and visceral pounding I get from my therapist, obviously.)

These things were already in existence and working well in some populations—but if it weren’t for advanced technology and research, I wouldn’t have known to use them because I wouldn’t have been able to get the correct diagnosis for such a rare condition. Without research and innovation, I’d still be chafing under the wrong diagnosis, living between hospitalizations, and causing yet more irreversible damage to my lungs.

(You can probably see now why the research I learned about the other night was so exhilarating, yes? Hope is an equal-opportunity phenomenon.)

So while my daily life involves many old-school techniques, my improved quality of life and my existence as a PCD patient speaks very much to new-school capabilities. It’s a collaboration between what we already know works for similar patients and what we’re beginning to understand about how specific cells and structures function—and based on what I learned the other night, it’s a collaboration that also stretches across all sorts of specialties and boundaries.

Clearly I can’t say if so many of us will ever have a cure for what ails us, but the more innovation and collaboration we have, the more we can refine treatments and understand the origins of our disease and target specific pathways, connections, and cells, the better. As the Slate article points out, it must be done in the appropriate way, and as recent events have shown me, when this happens, it’s a great thing.

Medicine and Social Networking: An Inevitable Pairing?

Posted on by
7

Last week, I read with great interest this post from Hospital Impact about technology, health care, and the Facebook generation. The points raised are compelling ones, namely: Is social networking is a better vehicle to foster community and spread awareness of health care innovations? Does it successfully integrate health care into daily life? Would health care providers benefit from social networking, and would viral marketing benefit practitioners and patients alike?

While I was pondering these questions, Healia.com, a consumer health search engine, launched its first Facebook application, the Healia Health Challenge. I use Facebook (albeit somewhat sparingly). I’ve used Helia. What would it be like to combine the two? Intrigued, I tried it out. (More specifics on the application follow below).

Of course, a whole new set of questions sprang to mind. Does the tech-savvy consumer/patient have emerging needs that depart from what more traditional Web forums, online communities, or list-servs can satisfy? Is this technological shift inevitable?

Between the great post at Hospital Impact and Amy’s query at Diabetes Mine, it’s clear the medblogging community has a lot to say about what it wants from health sites. As a corollary to all of this, I interviewed Jonathan Shaw, a marketing associate at Healia.com, to what he had to say about healthcare and social networking. Here’s some of our discussion:

Q: Let’s talk about social networking and healthcare innovation. What made you reach out to Facebook as compared to, say, exclusively health-related online communities?
A: When Facebook opened up its API to developers to build their own applications, we immediately realized we had a great opportunity here. We saw that we could create an application that’s both fun and educational, and can raise awareness about our search engine in a rapidly-growing medium. We do follow the health-related online communities closely, but we haven’t seen this sort of opportunity anywhere else yet – certainly not with the sort of exposure to a wide audience that Facebook provides.

Q: The Facebook application is a health quiz where top-scorers are designated “Chief of Medicine.” What factors went into creating this type of quiz? The style and content cover a broad spectrum of health issues but at the same time, they speak to a particular type of healthcare consumer. Does the “Facebook generation” have different needs than other healthcare consumers?
A: We wanted our application to be fun but also stoke young people’s curiosity about health issues. Many of the questions in the quiz were sparked by lunchtime conversations in which we bantered about health-related issues with uncertain facts. One of us had heard that carbonated water is supposed to be bad for you; others hadn’t heard that. Who was right? We used Healia to get to the bottom of these mysteries and we wrote our answers based on what we found. Through this process, we learned about common health myths and included these in some of the questions. From what we’ve heard so far, people are sometimes surprised by what they learn through the Healia Health Challenge.

(Editor’s note: Despite an embarrassing mix-up between HDL and LDL cholesterol and a misstep here or there regarding things like caffeine’s ability to help a hangover, I rocked the Healia Health Challenge. That’s right, you can call me “Chief of Medicine.” It was fun, especially since I am a medical dork and am oddly competitive about objective tests I take by myself.)

Q: Do you have any other plans/developments in store in terms of Facebook and the Healia Health Challenge?
A: We definitely want to keep this application interesting for Facebook users who’ve installed it, so we’re currently working on a new set of questions. This is a fun, creative process and if you’ve got any ideas for questions we should cover, please send them to our Marketing Manager, Tassie DeMoney: tassie@healia.com.

At the end of the day, I’ve proven that I know a lot about topical health care issues and now have an application on my Facebook page that tells people this, allows them to test themselves, and introduces them to a useful online resource. But is this first step the start of a new technological revolution for the health care consumer? You tell me.

An Addendum to “Why I’m Not a Numbers Girl”

Posted on by
4

You may remember that I don’t typically care much for numbers—how they can define us, how they can limit us, how I can’t escape them even when I wish I could. (Here’s the post all about that.)

I humbly submit an addendum to “Why I’m Not a Numbers Girl.” Don’t get me wrong, in most instances, I still feel that percents and ratios and variables and risk assessments too often fail to quantify what’s most important. I still don’t like that as patients, too often we’re reduced down to a list of stats and numbers (vitals, meds, dosages, surgeries, lab results).

But I recently (re) discovered that sometimes, numbers can actually better our understanding of ourselves. Not exactly earth-shattering news, I realize, and certainly all you diabetics who test blood sugar daily or patients who monitor blood pressure and other routine activities like that must be rolling your eyes at the obviousness of that statement, but it’s an important realization for me.

When I was acutely ill (in and out of the hospital for weeks at a time), the doctors trying to figure out what was wrong with me asked me to keep track of my peak flow meter readings. For those of you blessed with hearty lungs, a peak flow meter is basically a tube you breathe into that measures how much you can exhale. The lower the number, the more constricted your airways, so peak flows are a good way to predict respiratory trouble. I stuck with it for several weeks, filling in the little boxes in a notebook a doctor gave me…and then I went into the ICU again and everything got thrown upside down. When I came out of this hospital, I had a new team of doctors and a million other new things to consider and somewhere along the way, my little notebook disappeared.

And then last week, in the midst of spring cleaning my medications (so long, empty pill bottles! See you later, empty inhaler canisters!) I stumbled across my humble little peak flow meter. A desire for more order and predictability in my life coupled with an increasing interest in Microsoft Excel prompted me to re-instate the daily peak flow charting, this time with nifty little grids and columns.

The result? I’ve noticed a pattern: the days where my morning readings are especially low (they are never spectacular, even on my best days) correlate with the days where I wheeze more, cough more, and in general experience more fatigue. The days where my early morning readings are higher? I am able to go to the gym, I don’t spend half the day coughing, and I can get a lot more done.

Duh. I know you’re thinking it. I am, too. Somehow charting peak flows just slipped to the bottom of my priority list, far below all the other more time-consuming things I do to maintain my health. No, knowing my peak flow readings will not prevent my bad days altogether, but it will help me prepare for them and predict them. I understand my body and my symptoms so much better once I stopped long enough to pay attention to my internal warning signs.

Posted on by
Reply

When the Therapist’s Away, the Dog Won’t Play

My beloved therapist Steve is away for the week. Considering the guy sees at least three patients a day for chest physiotherapy on top of a full-time job, he deserves way more than a week’s vacation. Selfishly, though, I am glad he never leaves Boston for too long.

Anyway, I can (and will) write at length about my unique relationship with Steve–besides my husband, no one sees me more regularly and no one has that much pysical contact with me–but today what’s on my mind is the state of affairs when he’s gone.

I recently purchased a contraption called The Vest. I always feel like there should be some segue into that, like Dum Dum Dum..THE VEST. It’s an interesting (bizarre) contraption consisting of a generator that forces air into two tubes that attach to a vest that I buckle myself into snugly. When I rev up the frequency and speed, the air fills up the vest (I inflate like the Marshmallow Man) and vibrates rapidly, theoretically shaking the lobes of my lungs and loosening mucus that gets trapped there because of my PCD and bronchiectasis.

And it does–but it rattles everything else, too. It makes my arms and legs jiggle with every passing second (no amount of gym-going would protect me from this ugly scene), and when I try to speak, I sound warbled and almost like I am sitting on top of a washing machine moving at jet-engine speed.`

I don’t know about any of you out there, but I find The Vest effective. Not nearly as good as the sturdy clapping Steve gives me, but it makes me cough often enough to feel like it’s working at least somewhat. And failing everything else, it’s a great party trick. I can’t tell you how many friends of mine think it’s really cool…until I strap them in and they realize it’s actually not that cool to feel like the breath is getting squeezed out of you. They say it hurts, but by this point, I just find it uncomfortable.

The real issue with The Vest is that is it loud. LOUD. And my dog Sasha is a complete basketcase when it comes to sound. Seriously. She knocked over pans in the kitchen and went on a two-week hunger strike just to avoid being anywhere near the pans again. It was so bad we took her to the vet, who diagnosed her with doggie PTSD (post-traumatic stress disorder) and told us to put flower essence into her water to calm her down.

So, put a loud and potentially scary machine in the same tiny living room of my condo, and it’s a bad day in Sasha’s world. When it’s turned off, she slinks by it, giving it dirty looks. When it’s on, she dashes out of the room and cowers into the bedroom. After that, it takes her a few hours to even come near me again, and even then she somehow manages to give me a withering look.

Steve, come back home! As much as I miss you, Sasha misses you even more!