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?


Megan said...

My camera phone has been a godsend for tracking my joint inflammation and skin rashes/vasculitis. When I switched rheumatologists last year (my previous rheumy died suddenly) I was able to show her images that corresponded with the doctor's notes on my diagnoses and flares. Though I initially took the photos because I was horrified by the changes in my body, my doctors have been almost unanimously pleased to see the documentation. (I too feared being labeled an overzealous patient.)

Leah said...

Like Megan, photography has been incredibly important for documenting rashes and angioedema. Because as I'm sure your readers can relate, symptoms do not always occur at 3pm on a Wed when we have a doctors appointment. They happen unexpectedly and at 3am. I have pages of photographs in a binder (labeled with date/time and activity- e.g., "5 min post sun exposure") that I bring to appointments. They have been incredibly helpful for my doctors.

Unknown said...

I think it is amazing the way you have used technology to cope with your illness. I use the internet to renew my prescriptions online, email questions to my doctor, and to keep track of how I am doing with WebMD's fibromyalgia healthcheck, but this post has inspired me into thinking about other ways I can use technology to make life easier.

Shannon said...

Cancelling our cell phones was one the first "frivolous" costs we cut when I had to quit work because of my health. It's a $100/mos savings during this high stress low finances time in my life. It was necessary.

However, I do have to say that were it not for the many contacts I have made via Twitter, I'd not be doing as well as I am. Being up all night because of a nasty pain flare but being able to talk to several people who are experiencing a very similar issue for the same reason is an amazing thing. There is always someone online no matter the time of day or night who is willing to give you a virtual hug and words of encouragement. Even a simple acknowledgement that they saw your post and sympathize is helpful. So many of us with chronic pain crave vindication and acknowledgement when our own families (and sometimes doctors) don't believe the pain we suffer is even "real".

To be able to talk to someone online who really truly knows exactly what you are going through is incredibly helpful to me. Others say the same thing, were it not for Twitter.. we'd be in very deeply dark places indeed.

That is how technology has helped me. An instant support group of wonderful people who have the misfortune of suffering with chronic pain or illness. It matters a great deal to all of us that we have the internet and Twitter to share our experiences.

Dena said...

Megan brings up a great point with the camera phones. One thing that I can think of is the internet... learning new information about chronic pain and interacting with other with chronic pain is very helpful. I know one website that has helped me a lot with pain management has been I hope this is helpful!

Unknown said...

I love your blog.You should continue.
Anyways, I was wondering if it would be okay for you to link me to your blog..
I hope you'd consider...=)

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