Monday, March 12, 2012

On Technology and the Patient with Chronic Illness

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?

Friday, March 09, 2012

Weekly Grace 4

I had big plans for Spring Break—fun activities and play dates with my daughter, final round revisions, finishing the drafts of multiple blog posts, spring cleaning, etc. Instead, the week of Spring Break became known as the second week of the Late Winter Plague in these parts, with Baby Girl getting hit the hardest and the longest, so plans changed a little. While I catch my breath and catch up on life a bit, a quick nod to (Weekly) Grace in Small Things.

1. I don’t like the reason why my sick little girl was so sad and needed so many extra cuddles the past couple weeks, but I am very grateful that I could be there to give them to her when she needed me. This unorthodox schedule I keep has some challenges, but the benefits? Priceless. Truly.

2. A pediatrics group who not only responds to calls quickly and books in appointments on the spot but also has nurses and nurse practitioners who call on their own first thing in the morning and just before leaving at night just to check in on Baby Girl because they are thinking of her.

3. Longer days and mild weather, which brightens my mood and reminds me of all the playground and play time possibilities that await us this spring.

4. A Friday night off from any true work, which means time for putting laundry away, blogging, and perhaps even reading a book for pleasure (gasp!). It’s been way too many months since I had one of these nights.

5. I spend so much time commenting on writing and doing so much writing and revising on my own that I have been a bit of a slacker in terms of posting. But I am always reading, and figure it’s worth a shout-out to some of the blogs I frequent these days:

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Flux Capacitor

Aisha Iqbal

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