Caregiving and the Personal Health Record in 2010

It’s been a little harder than normal to blog lately, because of Twitter / Foursquare, and because of some travel…

Earlier this week, I had the honor of co-presenting in front of the CEO’s of Kaiser Permanente and The Permanente Federation, at a regular Town Hall meeting, about the completion of the KP HealthConnect rollout across the United States. You can read more about that here.

When I went to demonstrate the significance of what this means, I didn’t choose a video of doctors or nurses, I chose one of patients/members. And, I chose one of members who are caregivers. I also showed this video when I co-presented at Holly Potter at HIMSS.

I have become very interested in caregiving; following the excellent report put out by AARP (Caregiving in the United States, 2009), I put together this graphic of data I feel is important to pay attention to from that report:

The impact of caregiving in people’s lives/productivy is going to grow, as our senior population ages, and the number of people available to take care of them does not grow. the personal health record can be something that reduces caregiver stress, and this member’s story is a great illustration. Enjoy.


Important topic. I know firsthand from my dad's final illness how realistic the video is.

I dug into the report's executive summary to find out more about "some job impact." The reality makes it hit home a bit more:

• Over 70% of caregivers were employed at some time while caregiving

• 66% of those have gone in late, left early, or taken time off mid-day for caregiving

• 20% even took a leave of absence.

The other thing that hit me was that in the last 5 years, the average caregiver's age has moved up 3 years, from 46 to 49.

Then there's the health impact of being a caregiver. Alexandra Drane of Eliza Corp recently mentioned that being a caregiver has as much impact on well-being as CHF. (I don't know what her basis was but she was confident.) So, she says, being a caregiver should qualify as a medical condition.

And now I wonder whether users of an online health manager might experience fewer of those effects. Heaven knows having one helped me in my case, and not having one for Dad made life harder for my mother and sister.

Might be an area for further research by KP – and darned good justification for providers to provide one and patient families to get on board: for their own protection.

Well said as always, Dave. Just as the personal health record for me reminded me that we have to care for patients when they are not in the medical office, mature systems like this are reminding us that the patient isn't the only one doing the caring or needing to be cared for, when the secure e-mail that comes from the family member asking, "what are the changes to the care plan?"

This is why I am drawn to this technology – not technology in general – the technology that makes us see the impact of what we do. For those of you who haven't read it already (I know you saw this, Dave), check out Ruby's Bequest, which is about community caregiving. Both the way it was created (an interactive online game), and the solutions discussed, are fascinating. From our friends at Institute for the Future (yours and my alma mater…).


btw, not specific to this post, but about the power of stories in general: this recent NYTimes piece talks about how and why stories (fiction in the article) hook into our brain.

I'm tentatively intrigued with the "altruistic hero" concept. It's described in the article as "altruistic punisher," but I think that angle is unnecessary: people are drawn to those who help someone who's facing a challenge. Hence, I might infer, the appeal of a video like this.

Another thought-provoking post Ted! Dave, thanks for pointing out the numbers behind it all! I was really touched by love and care that was shared and you can totally feel the gratitude of her father.

Our health care system often seems designed for a culture that places a high value on the idea of independence and individualism … thus designs for independent living, programs that aid in self-tracking/logging and patient privacy is of great importance in such a system. Even the use of the term "personal health record" is tuned into that.

Yet, from what I can see each person's health is so interconnected with intimate caring relationships and community. We really do need the eyes of others to help us pay attention to the many details. Caregiving is highly under-rated until we look at the high cost of institutionalized care.

My elderly in-laws would not be the healthy septo- and octogenerians they are without the incredible care and vigilance they get from their adult children and grandchildren. It is teamwork in all its beauty. My grandfather, approaching 96, still walks, gardens, washes his own clothes, cooks for himself because my mother and brother watch over him like hawks. It is not self-tracking but "group-tracking" and we need more connected tech and design that supports the reality of this kind of caregiving.

A dear friend recounted how she and her sister share the care of their elderly mom suffering from dementia and how they couldn't remember what labs their mom needed before her next appointment because they each thought the other had taken care of things. They had to wait for a few days before the doctor's office could pull out the paper records to look up the labs and the office needed to verify that they had the right to ask for such information.

KP's tech and thinking is so ahead of the pack on what you offer patients and their caregivers.

Somehow I missed that post about Ruby's Bequest … really look forward to plunging into that!

Ted Eytan, MD