Tech

Knocking on Health 2.0’s Door

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.

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Carol Marak - Senior Care PublisherCory Annis, MDWilliam Hersh, MDLeslie Schoversouthern doc Recent comment authors
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Carol Marak - Senior Care Publisher
Guest

Great perspectives! Thank you, Leslie! Fortunately for my mom, living with CHF, her doctor was very realistic and he kept the family involved. We never had high expectations on mom living a long life, especially since she didn’t take great care of her body. But in the end, she was happy. And she was ready to go. I’m so thankful that the doctor didn’t try to prolong her life with devices… we opted out of that type of care for her.

Thanks for being realistic.

Leslie Schover
Guest
Leslie Schover

Hope that robot (maybe they should call it the Baby Boomba) is ready when I need it!

Cory Annis, MD
Guest
Cory Annis, MD

What a great post and comments! Thank you SO much, everyone. You voiced beautifully a concern of mine that I will speak to at our local Health 2.0 next month. When I’m in these meetings, or at TEDMED or SXSW, I realize that most of the architects of the current health tech boom have likely not seen a doctor since their last high school sports physical. In fact, because they grew up with the concerns of third party payers dominating the landscape, they may have no idea that doctors and patients are actually supposed to have relationships with each other.… Read more »

Leslie Kernisan, MD MPH
Guest

hi Cory,
good points you make, and yes, happy to have more clinicians (and others) call themselves cautious techno-optimists!

love the idea of healthcare innovation becoming a space of intergenerational learning and understanding.

well, many doctors are unwittingly creating impediments…what can we expect, the culture & practice of medicine is changing quickly, and also often the expectations that people have are unrealistic. (Now that would be a fun post to write: the various unrealistic expectations that various constituencies have regarding primary care physicians.)

there’s a middle ground where we can all meet and do our best work…we’re finding our way there…

Cory Annis, MD
Guest
Cory Annis, MD

Leslie, It’s so exciting to hear someone else talk about the unrealistic expectations on (and of) primary care physicians. It doesn’t matter now how we decide to “solve” the issue of access to decent and affordable health care. No matter who signs the laws or the checks, the “responsibility” for actually instituting ANY healthcare grand plan always lands in the lap of arguably the most demoralized and disintegrating work force in America — primary care doctors. Big organizations think armies of mid-levels are the answer. The tech industry runs about busily one upping each other with “patient engagement” tools. Digital… Read more »

Leslie Kernisan, MD MPH
Guest

Cory, couldn’t agree more re importance of revitalizing primary care providers, along with attending to patients’ needs. Esp for those people with ongoing health issues, a working collaboration is essential, and for that both sides need to be supported.

Love the analogy with the mid-life women suffering from loss of libido!

Healthcare tech designers would certainly do well to remember that the most useful tools need to be designed for patients AND their primary care advisors…because we advise the patients, and are best suited to provide person-centered (as opposed to disease-centered) care.

William Hersh, MD
Guest

Dr. Kernisan, As always, I enjoyed your post. I am a physician in his mid-fifties who eats well and exercises, quite a bit actually. I have no interest in “quantifying” myself. I would rather enjoy healthy food, exercise vigorously, and otherwise enjoy life. I will confess that I own a Garmin GPS watch, but mainly to show off to my friends on Facebook all the exotic places I go running around the world. But I agree that the best advances in tech will help us take care of our elders (parents and others) as they inevitably age and develop chronic… Read more »

Leslie Kernisan, MD MPH
Guest

hi Dr. Hersh, Thanks for the comment and the feedback. Agree that there may be something of a tradeoff betw quantifying oneself and enjoying life…I’ve been wearing a device for the past few weeks to quantify sleep and exercise, and am rapidly losing interest and even feeling a bit annoyed by the device…even though I know I should get more exercise as eventually that should help improve my sleep. My point being, I find it hard to do what’s ideal for my health! And as a physician I’ve found it’s often a challenge to support patients long-term with behavioral interventions… Read more »

Katy Butler
Guest

Thank you Leslie for a poignant & insightful piece about my book, “Knocking on Heaven’s Door.” My elderly parents — who, by the way, practiced every type of prevention — eventually needed time-consuming “high touch” health care more than anything “high tech” (which they couldn’t have handled anyway —neither one even had a cell phone.) Unfortunately Americans have a touching faith in technologies as workarounds for almost any human problem. When the terror of aging and death collide with the technological imperatives of modern medicine, we find ourselves victims of the most drawn-out, expensive, and painful ways of dying ever… Read more »

Leslie Kernisan, MD MPH
Guest

Katy, Thank you for your comment and even greater thanks for writing your book. I hope it gets talked about on Oprah or some such, because without an army of caregivers of elders demanding better, the revolution is likely to be slow in benefiting the aged. It should also be read by the med students & trainees, as they are all supposed to be learning more about geriatrics and I can hardly think of a better way for them to do so. And of course, I’d love for many digital health innovators to read it as well…I’m not sure tech… Read more »

Leslie Schover
Guest
Leslie Schover

As the newcomer Leslie to this blog, I wanted to add my appreciation of Dr. Kernisan’s post. “Knocking on Heaven’s Door” has been on my to-do reading list since I read a review of it several weeks ago. I also noticed at Health 2.0 the apps to help a caregiving family share news and tasks, and to increase adherence to medication. I recently heard a description on the radio of a new technology that can use radio wave disruption to trigger an alarm if an elderly person falls, which would be a step up from having to wear a push-button… Read more »

Leslie Kernisan, MD MPH
Guest

hi Leslie: Wow, this comment is a like a remarkable blog post in itself! I had very similar thoughts in reading Vik Khanna’s post. My own father was a bit of a health & fitness nut, yet he died at age 61 of lymphoma…fortunately for him (and for us, I suppose) he was only very ill & physically dependent for a few months, but of course most people — and their families — eventually endure years of diminishing health & progressive disability in the last phase of life. The family issues are tough. Not only are families spread thin but… Read more »

Maneesh Juneja
Guest

“The continual exclusion of ageing from national and global agendas is one of the biggest obstacles to meeting the needs of the world’s ageing population,” Silvia Stefanoni, the interim chief executive of HelpAge International, explained.

Source: http://www.lifesitenews.com/news/global-study-shows-most-countries-unprepared-for-aging-population/

Maneesh Juneja
Guest

Leslie, you’re a pioneer and a visionary who needs to be heard at a global level. In other words, you ROCK! MJ

Leslie Kernisan, MD MPH
Guest

Thanks Maneesh and Afik, your encouragement is greatly appreciated!

Afik Gal
Guest
Afik Gal

A brilliant read.(not the first from this author) especially for those work on healthcare innovation -hype vs. facts…
I would just add that I see Health 2.0 ideas/technologies currently more relevant to the prevention side and their success will be measured if less people get to the place where the butlers are in the book.

Matthew Holt
Guest

Ah, but my dear Dr Kernisan, if you had not misspent your youth in medical school learning to save lives and instead (as I did) spent it studying the sociology of revolutions (French, Russian and Chinese in my case) you would have learned that revolutions are messy, take a long time and may not have the outcomes originally envisioned. But what causes revolutions, or more accurately causes the potential for them, is new technologies which lead to new process innovations. What you’re seeing at Health 2.0 is the new set of tools that will enable the revolution, and eventually get… Read more »

Leslie Kernisan, MD MPH
Guest

My dear Matthew, where shall I start. First and foremost by thanking you for allowing me to regularly air my grousing geriatrician’s perspective on THCB! Ok, I’ll try to remain patient regarding the coming revolution in how we help elders, caregivers, and clinicians navigate those messy last years of life. As you know, I really believe we can’t do it without tech. (Plus giving people access to information and their health data, and otherwise empowering them to participate.) But I’m sure you’ve seen the CBO figures re Medicare and Medicaid spending, as well as the daunting projections regarding meeting care… Read more »

Peter1
Guest
Peter1

“But what causes revolutions, or more accurately causes the potential for them, is new technologies which lead to new process innovations.”

All revolutions? Certainly there are different types. Would that include the industrial revolution, the electronic revolution and the Russian revolution? Or even the American revolution?

My understanding is some, if not most real revolutions are caused by the disproportionate distribution of resources to the few from the many.

Do you see Health 2.0 reducing costs or reducing prices. The two don’t necessarily work in tandem, especially in health care. The ACA says that subsidies work better than cost reduction.

Matthew Holt
Guest

The beauty of THCB is that I get to quote literally the most important piece of sociology theory ever written…. “It is not the consciousness of men that determines their being, but on the contrary it is their social being that determines their consciousness. At a certain stage of their development, the material productive forces of society come into conflict with the existing relations of production or – what is merely a legal expression for the same thing – with the property relations within the framework of which they have hitherto operated. From forms of development of the productive forces… Read more »

Peter1
Guest
Peter1

“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.” Great post Leslie! I wish you were my doctor, but that means shifting funding away from traditional treatment. American health care is designed for the insurance industry, providers and politicians – but I don’t know how to change it by taking the profit and politics out of decision making. When DC is about extremist positions and corporate funding of election campaigns there… Read more »

Leslie Kernisan, MD MPH
Guest

Well Peter, I think the answer is in part to foster revolution, as Matthew is trying to do. People need to somehow demand that more of their healthcare money goes to things they value, like primary care designed to meet their needs. But of course, we also need to find some reasonable way to set limits and boundaries on healthcare. It’s a tough problem but I do think that empowering and educating families is a place to start. Which is part of why I liked Knocking on Heaven’s Door by the way. At the end the family ends up taking… Read more »

southern doc
Guest
southern doc

“People need to somehow demand that more of their healthcare money goes to things they value”

Isn’t the “revolution” that Health 2.0 promotes one that puts more of our healthcare money into the pockets of entrepreneurs selling toys and gadgets, and takes it away from time-consuming high touch health care?

Our resources are limited, so where do we want to direct them? Have EMRs made our health care more high touch?

Peter1
Guest
Peter1

Great point southern doc.

I think Leslie sees this exactly as you do – “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.”

If this were about patients then I’d think these “entrepreneurs” would do as the drug companies do – advertise directly to the patient. Let the patient see the value and push the doctor to get the technology.

Leslie Kernisan, MD MPH
Guest

thank you both for these comments. I’ve been struggling over the past year, trying to figure out how to reconcile the needs of my patients with the needs & motivation of the entrepreneur & business community. Entrepreneurs need to have a viable business plan. If you want to market to patients, the millions of younger people interested in wellness are a better bet than the aging adults with multimorbidity. Plus it’s easier to design a product or service for this group. There are some products out there for older adults, mainly trying to capture the “boomer purchasing power.” It’s a… Read more »

southern doc
Guest
southern doc

At this point, I would gladly trade every penny we’ve sunk into HIT for a comparable investment in pediatric and adult immunizations, mental health services, and home health care.

Kevin Yen
Guest

Leslie — Just wanted to say I really enjoy your articles/posts. Every time I read them, I’m always thinking, “Leslie’s writing about real life.” 🙂

Tyler Hayes
Guest

Motion seconded. There are things in life I know, and things I don’t. Geriatric care is something I don’t. It’s really nice to have someone (Leslie) I can turn to when I need to know how to start thinking about all things geriatric. Wish we had more strong, wise voices like hers across all range of topics in health.

Leslie Kernisan, MD MPH
Guest

Thanks for this feedback, I will definitely keep it mind next time I’m banging my head against the wall, wondering whether I should keep blogging…