Chronic diseases exact a huge toll in terms of human and financial impact. According to the CDC, chronic diseases account for $3 of every $4 spent on healthcare — nearly $7,900 for every American with a chronic disease. What’s more, they cause 7 out of every 10 deaths.
As a woman who has been relatively responsible in managing her health, I shake my head in disbelief. Yet, it’s hard to ignore, knowing that I lost a father to heart disease, a mother to Alzheimer’s and now I have a spouse who is dealing with diabetes and heart failure.
A Call to Action: Prevent, Intervene, Innovate
For me, this is a call to action. Following the Triple Solution for a Healthier America, I’m more keenly focused on prevention for me. For my spouse, it’s about intervention and innovation (i.e. technology-enabled tools). Supported by a great network of providers, I’m becoming a more active participant/advocate in helping him manage the complexities of his diseases.
One of the most important things I do is listen and observe. Here’s what I’m finding:
- Bringing in diabetes educators to teach and guide him was a good beginning. They provided insights and helped “activate” him. Sadly, this didn’t happen until years after his initial diagnosis.
- An iPad® app has been beneficial in helping him record his blood levels, carbohydrate and sodium intake, calories and medication doses. It’s slick and gives him a sense of control in face of a disease that can make him feel helpless at times. At the same time, when he experiences the effects of high or low blood sugar, it gives him the means to revisit the data and adjust his regimen and behavior.
- I also see that automated reminders and more interactive applications, which integrate preset goals and flag him when he goes off track, could be even more beneficial.
- Though my spouse is a self-described “techy,” I can see periodic one-to-one discussions with educators are also needed to review and reinforce his progress, make mid-course adjustments, clarify certain points that have been forgotten or were unclear in his mind, and to address new issues that emerge.
- These one-to-one discussions also would be valuable to me as a patient advocate. I still have so many questions that arise outside of our physician conferences. Yet, I don’t honestly feel I have “full membership” in the care team. His physicians are great but not fully accessible and I don’t feel that I’m doing enough.
Family-Centered Chronic Disease Management
There are so many great methodologies and tools emerging to support people in managing chronic diseases. However, it’s clear to me that my family (and probably others) needs a “strategic plan” that is patient- and family-centered, and sustained by on-going communication.
I only recently viewed a 2009 video of Don Berwick, talking about What Patient-Centered Care Really Means. Like him, I fear the prospect of being anonymous and powerless when facing homogenized care. Gratefully, tremendous strides are being made, but there is still a long journey ahead before patient- and family-centered care is the norm. And for those managing chronic disease, it can’t happen soon enough.
What are you doing to advance the cause?