Are Individuals With Chronic Illness More Passive?

Some recent experiences we had at the Center, as well as some data published by my friend Susannah Fox at the Pew Internet Project, have me noodling about chronic illness.  This is going to motivate some readers to jump all over me, and I welcome the dialogue. But, please, before you do, take time to read and contemplate.

Lets start with the real data.  Fox’s report on the Internet and Chronic illness is a must read for any care provider with a goal to engage patients over the web.  It starts by comparing the fact that although 81% of adults reporting no chronic disease go online, only 52% of adults with two or more chronic illnesses go online.  It goes on from there. For instance 24% of individuals with two or more chronic illnesses use the wireless internet, whereas 50% of those with no chronic illness use the wireless internet.  There is something qualitatively different about this group in terms of their use of this technology, independent of other variables such as age and socioeconomic status.

This contrasts wonderfully with a feature in Wired published in July of ’09, called Living By Numbers. One of the stories in that feature points out the success of Nike+, a product co-developed by Nike and Apple.  It involves a shoe insert, which has an accelerometer embedded.  That device communicates wirelessly with an iPod, tracking steps and acceleration.  Synchronizing the iPod to a computer allows information about a work-out to be upload to the Internet and shared with others via a social network.  According to the piece in Wired, more than 1.2 million runners have tracked more than 3 million miles.  Nike says that if you upload 5 runs, you’re hooked – you keep uploading.  This is great success by any estimate.  When I read it last summer, I paused to ask….’why is our experience at the Center so different’?

One of our programs is called Diabetes Connect.  Patients with diabetes are chosen by their health care provider because they are viewed as being a good fit for a data-tracking program.  Each patient gets a device that retrieves glucose readings from their glucometer and transfers it to our database.  We present each individual’s readings to them on a customized website, which is also available to a nurse in the patient’s primary care practice. The nurse can determine from a dashboard view which patients deserve attention and then care for them in the moment, when the need is greatest.

We’ve learned that there is a correlation between uploading one’s glucose readings and improved outcomes. There is also a correlation between how often the nurse logs onto the site and health outcomes for this patient population.    Patients tell us that it is motivating to see one’s own glucose readings in the context of their lifestyle, but it is more motivating when the nurse from the practice looks at the data and communicates with them.

We recently did some phone outreach to those individuals who were asked by their doctor to join the program, but did not participate.  Remember, we have good evidence that these people will have worse outcomes.  In a bundled payment, shared savings or capitated environment, they’ll cost us more.  Or, from another point of view, they cost their employer more.  I was fascinated by some of the reasons these folks gave for not adhering to their doctor’s advice.  Here are some notes from the staff member who called these individuals:

“Patient said it is just too much work for him to do. The doctor checks on him anyway. He does not think it is necessary to do it, and he wants to give back the equipment.”

“This patient honestly seemed like he is not interested. I asked if I could help him, because he does not have any readings since February, and he said “no.” I asked if there is a reason why he had not uploaded, he said “no.” I asked if he will want to continue doing it, he said “eventually.”  That is as much as I could get from him.”

“Patient said that she does not think it is necessary for her to upload (she has done it before) because Dr.  XXX does not look at the readings, and she sees him every 8 weeks anyway. So, she does not want to do it.”

“Spoke with patient, who said she just “hasn’t gotten to set it up yet.” She just forgets, but when she does she will call if she needs help.”

What a stark contrast to the Nike data.  Perhaps its not a fair comparison as Nike’s report was on people who did use the system, not on those who did not use it.  If we only read the article in Wired, we’d conclude that everyone is dying to upload their health information and have it reviewed by others in a social network.  Our experience with chronic illness is much different.  It takes cajoling to get people to achieve the activation energy necessary to start uploading and once they have done so, their participation generally falls off if they do not get some sort of coaching feedback, ideally from their provider.

Another difference is that users of Nike’s system pay out of pocket for the pleasure of using it.  In our research to date, we’ve not found any significant cohort of chronically ill folks willing to pay out of pocket for a connected health service.  A third difference is the proactivity of the fitness buffs – sure they can learn something from a trainer, but in general it’s a self taught activity and they seem highly motivated.  Our diabetes patients seem, in general, quite ready to abdicate responsibility for their condition to a doctor. The comments above have a disturbing passivity about them.

The question one is left to ponder is whether that passivity is a result of some co-morbid cognitive state or whether we, as health care professionals, have convinced our patients that they can’t or need not be actively involved in their care.  I’d love to hear your thoughts on this.