I recently attended the flagship Health 2.0 conference for the first time.
To avoid driving in traffic, I commuted via Caltrain, and while commuting, I read Katy Butler’s book “Knocking on Heaven’s Door.”
Brief synopsis: healthy active well-educated older parents, father suddenly suffers serious stroke, goes on to live another six years of progressive decline and dementia, life likely extended by cardiologist putting in pacemaker, spouse and daughter struggle with caregiving and perversities of healthcare system, how can we do better? See original NYT magazine article here.
(Although the book is subtitled “The Path to a Better Way of Death,” it’s definitely not just about dying. It’s about the fuzzy years leading up to dying, which generally don’t feel like a definite end-of-life situation to the families and clinicians involved.)
The contrast between the world in the book — an eloquent description of the health, life, and healthcare struggles that most older adults eventually endure — and the world of Health 2.0’s innovations and solutions was a bit striking.
I found myself walking around the conference, thinking “How would this help a family like the Butlers? How would this help their clinicians better meet their needs?”
The answer, generally, was unclear. At Health 2.0, as at many digital health events, there is a strong bias toward things like wellness, healthy lifestyles, prevention, big data analytics, and making patients the CEOs of their own health.
Oh and, there was also the Nokia XPrize Sensing Challenge, because making biochemical diagnostics cheap, mobile, and available to consumers is not only going to change the world, but according to the XPrize rep I spoke to, it will solve many of the problems I currently have in caring for frail elders and their families.
(In truth it would be nice if I could check certain labs easily during a housecall, and the global health implications are huge. But enabling more biochemical measurements on my aging patients is not super high on my priority list.)
Don’t get me wrong. There was a lot of cool stuff to see at Health 2.0; a lot of very smart people are creating remarkable technologies and tools related to healthcare. The energy, creativity, and sense of exciting possibility at a gathering like this is truly impressive.
And yet, most of the time I couldn’t shake the feeling that all this innovation seemed unlikely to result in what our country desperately needs, which is more compassionate and effective healthcare for Medicare patients and their caregivers.
The need to improve healthcare is particularly urgent for those seniors who have 3+ chronic diseases, or have developed cognitive and/or physical disabilities, since health issues seriously impact the daily lives of these patients and their caregivers. And of course, these patients are where most of the healthcare spending goes.
So here we have a group that uses healthcare a lot, and their problems are the ones who challenge front-line clinicians, healthcare administrators, and payors the most. And we love these people: they are our parents, grandparents, and older loved ones. Many of us are even taking care of them, sometimes to the detriment of our own health.
Knock knock. Who is listening? Where is the disruptive innovation we need to help elders, caregivers, and their clinicians?
Real impediments to the Health 2.0 Revolution
“Ready to Revolutionize Healthcare?” asks the Health 2.0 homepage.
Yes, I’m ready. But we’ve got a ways to go before these revolutionary tools can actually revolutionize the average older person’s experience with healthcare.
Why? Two key reasons come to mind.
1. Most solutions not designed with the Butlers in mind. As best I can tell, most innovators don’t have the situation of the Butlers in mind when they design their healthcare solutions. They neither understand the situation from the point of view of the Butlers themselves, nor do they understand the situation from the perspective of the front-line clinicians who could and should do better.
For instance, did the Butlers need games to maintain healthy behaviors and keep Mr. Butler walking and exercising after his stroke? Did they need for all interventions to be considered in light of “Healthspan” rather than “lifespan”?
(What is Healthspan for a slowly declining person with dementia and incontinence anyway? We geriatricians think of improving function, wellbeing, quality of life. And most importantly, of prioritizing the issues because you can’t possibly address them all so go with a combination of what matters most to the patient and what seems most feasible.)
And did the clinicians involved need predictive analytics to help them identify when Mr. Butler was at risk getting worse on some axis that the population health management gurus are worried about?
Which of these innovations will help patients, caregivers, and front-line clinicians establish an effective collaboration on mutually agreed-upon goals, and tailor healthcare to the patient’s situation and needs? How to convert population level processes regarding outcomes and cost-containment into real improvements in the healthcare experience of most elderly patients?
Finally, Medicare is the 600 pound gorilla in healthcare, both as a payer and as what most healthcare providers spend most of their time serving. You want to change healthcare? Change how we care for seniors. (And I don’t mean the healthy ones over-represented at AARP.)
2. Too many solutions to choose from. If you are a patient or caregiver, and decide to consider a new approach to weight loss, or timed toileting, or tracking a symptom: the number of approaches you could try – whether tech enhanced or no — is overwhelming. Especially if you research online.
If you are an individual clinician — or a smaller practice — and would like to consider a new and improved way of doing things: the choices are overwhelming. (A lot of primary care is provided by small practices; there’s obviously a trend towards consolidating but also some backlash.)
Now of course, big organizations have more resources with which to choose solutions for their providers, and big payers can choose solutions for individual patients and families. But unfortunately, when tools aren’t chosen by those who use them, users tend to end up with crummy user experiences.
There is probably an innovative way to work around this and make it possible for end-users to more easily find tools that are a good fit for them. But until those innovations become widely available, I think many in the trenches — patients, caregivers, and clinicians — may find that supposedly helpful innovations are actually not so helpful…a frustrating state of affairs when one is overwhelmed with the challenges of helping an aging adult in declining health.
Islands of relevance at Health 2.0
At an event as big as Health 2.0, there are of course pockets of activity relevant to the care of geriatric patients. There was a session on tools to help family caregivers (which covered two care coordination tools and two sensor/alert type tools) and another on nifty tech to help patients take their meds.
And of course, there was the justifiably popular Unmentionables panel, led by Eliza Corporation’s Alex Drane, which highlighted pervasive issues that affect health but that we tend to not talk about much. These include financial stress, relationship stress, and caregiving. (Good recap of the panel at Healthpopuli.com, and I LOVE that caregiving is high up on this list.)
Words to keep in mind
Alex reminded the Health 2.0 crowd that when it comes to helping with health, we must meet people where they are at. “Health is life; care, completely; empathy absolutely.”
As for me, I found myself thinking of a quote from Larry Weed and “Medicine in Denial.”
“The religion of medicine is not feats of intellect. The religion of medicine is helping to solve the problems of patients, and the compassion involved in the very act of care.”
Similarly, for those who evangelize digital health, and believe that new technologies will revolutionize healthcare, I would say:
The religion of healthcare should not be feats of technology. The religion of healthcare should be to help solve the problems of patients and caregivers, and the compassion involved in the very act of care.
And I’d also recommend they read “Knocking on Heaven’s Door,” or something similar, while attending exciting conferences and planning to revolutionize healthcare.
Leslie Kernisan, MD MPH, is a practicing geriatrician, cautious techno-optimist, and enthusiastic caregiver educator. She hopes to someday be surrounded by cool tools and innovations that will make great geriatric care totally doable for all, especially primary care providers and family caregivers. She is a regular THCB contributor, and blogs at Geritech.org and at drkernisan.net.