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1. 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.

2. 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.

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

4. 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 devices have indeed allowed “everyperson” to topple stagnant industries and unresponsive governments with a swipe of their finger. It’s easy to think then that the answer for health care is to just give the patients free information access and unlimited engagement tools and they will forge a brave new health care. Why not? The internet and mobile devices are indeed the Gutenberg printing press of healthcare. People can now unseat anyone who doesn’t realize that the days of the High Priests and Temples to the Religion of Medicine are gone.

   But you don’t need a trusted adviser to create a playlist, or have a 50″ flat screen TV delivered to your door, or even to start a revolution on the other side of the world. However, where will you seek help, comfort or a reprieve when your Google Glass streams the following message from Watson:

   “Today is your predicted expiration date. You have 30 minutes to get your *%# together — 35 if you put down that doughnut — 33.89 if you actually swallow the bite you are currently chewing, Lard Butt.”

   I could be accused of bias here but it seems that primary care physician re-engagement balanced with patient engagement stands a much greater chance of sustainable revolution in health care. When it comes to our resistance to engaging with tech, primary care docs recount a theme eerily similar to one I hear too often from my mid-life female patients complaining of complete loss of libido. While we would like to see ANY aspect of our once intense desire restored, we watch huge industries role out an ever-greater variety of performance enhancement for our patients/partners. We can grasp cognitively that it is probably easier, faster, cheaper, and sexier than finding a real, safe, sustainable solution for OUR re-engagement. After a while, disengagement becomes preferable to living with constant and unavoidable resentment. And even if the resentment is at the industry or the system, our freshly engaged “partners” can’t help feeling like the resentment is directed at them, making them easy targets for whatever the next “it” thing is. Reducing the impediments to relationship for BOTH parties is the business plan with REAL staying power. And that can be done without getting “permission” from the crumbling top down organizations that try to dress it up but still think they hold the cards.

   If I were addressing a roomful of heath care tech designers I’d say “Design the things that make it easy for Primary Care to feel genuinely “attractive”, competent and committed to a real partnership behind the exam room door again. Do that and you will solve the lion’s share of health care cost, decrease a choking sense of resentment destroying a noble and necessary profession, and probably get very rich in the process. But it has to be a genuine relationship enhancer; simple elegant and comfortable, not just another box from Victoria’s Secret.”

   Oh, damn…that’s probably an unrealistic expectation, eh?
   Cory Annis, MD

5. 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…

6. 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 and chronic disease management…they are busy, tired, and sometimes feeling quite ill. Which is not to say that technology couldn’t help; I think it can. But it’s a big messy problem, supporting real people (as opposed to health nuts) in optimizing their health and well-being. And of course, even harder when people are quite disabled or chronically ill.

   I hope you’ll let me know if you come across tech advances that you think are likely to be useful to average boomer caregivers, or older adults with multiple chronic problems.

7. 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 I worry about people knowing their neighbors less over the coming decades…I do often encounter frail elderly patients who are being assisted by neighbors, but that’s because everyone has been living in the same place for decades…a state of things that we may not have in the future.

   Re tech, have you heard of Hoalaha Robotics? They are working on robots to help seniors:
   http://gigaom.com/2013/09/09/hoaloha-robotics-founder-on-how-robots-can-serve-a-growing-senior-population/

   Re hired caregivers, companies like CareLinx are reducing the bite of the agency middleman…remains to be seen whether it ultimately is much better for families, but seems to provide caregivers with a bigger cut of the money.

   thxs again for this lovely thoughtful comment.

8. 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. And if they managed to make it into robust young adulthood without that, what good could it possibly be? If you can map your genome and quantify yourself out the wazoo, shouldn’t you be able to create an algorithm that lets you skip the messy uncertainty of a human relationship? When I follow the hottest young designers in health tech today, it sounds like the industry has decided that doctors are not only unnecessary, but are actual impediments to the advancement of personal health.

   Following that same line, if you are still in the phase of your life where it is natural to be convinced of your invulnerability, it is really difficult to imagine, let alone create, software and hardware that is useful and intuitive enough to use when you are sick, physically impaired, in prolonged pain, or dying.

   It is such a ripe place for generations of patients, doctors, entrepreneurs, designers, and funders to mentor each other up and down generational divides and across disciplines, something that the digital age is so perfectly ready to facilitate. We just have to remember there is such a humanizing utility to popping our on carefully constructed information bubbles.
   Yes…Leslie… a cautious techno-optimist…. can I steal that?
   Cory Annis, MD

9. 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 disease. And help us now-healthy baby boomers whose children will be taking care of us as we age.

   Bill Hersh (Informatics Professor)

10. 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.

11. 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 alarm that may not be handy in an emergency or would be useless if the person living alone lost consciousness. Yet I agree that innovative technology has a limited role in helping us care for the chronically ill or for making dying as short, painless, and meaningful, as possible.

    Although our health care system does a hideous job, I think an even more fundamental problem is the radical change in family life since industrialization. Although there is some trend for extended families to move back in with each other, it is mainly forced by economic necessity. Our cultural value is that each person or nuclear family unit should be independent. In our vast country, childen may live thousands of miles away from elderly parents. Skype is great for conversations, but not so helpful when someone needs help bathing or is starting to have dementia. Most families do not have the option of having a responsible adult give up their fulltime employment, even when it is a child who is desperately ill. After all, the health insurance that pays for medical care is usually tied to the caregiver’s job.

    When caring for my father during the last, agonizing 6 months of his life after he had a catastrophic fall, I saw that hired caregivers are paid a minimal wage, with a big portion going to the agency that vets them, yet it still mounts up to a hefty price even for an affluent family. Until it becomes possible to invent an android robot who can provide not only sophisticated physical help, but also affection, caring, and entertainment for the person who is ill, I do not see a technical solution.

    I also just read the post by Vik Khanna about avoiding the health care system. Having worked at a major cancer center for many years, I know that even the righteous who have never had a BMI over 25 and munch kale and edamame in between running marathons are going to become ill and die, unless they are killed in an accident or by violence. Our family lives also affect how we cope with illness, even before fragile, old age. I was asked by the public relations department at work to comment to the media last month about a study published in the Journal of Clinical Oncology that found being married conferred a better survival advantage for several common types of cancer than having chemotherapy. Married patients were more likely to get optimal cancer treatment and to adhere to it. One flaw in the picture is that in our society, those who marry may be more educated and in better health as a starter, so what is chicken and what is egg? Also, men benefit more from marriage than women, a common finding in the health literature. Women tend to be better at taking care of themselves, and indeed women’s health may suffer when we marry since we become responsible for husbands and children.

    I felt like a hypocrite talking to the reporters, since I myself am long-divorced and know that the lack of family or very close friends in my home city recently led me to be two years delinquent in having a repeat colonoscopy (no they would not let me go up to my office for a few hours and then drive home). I also started to wonder if I would have decided to go through six month of rigorous chemotherapy to get a possible 5% reduction in my risk of breast cancer recurrence if I did not picture myself having a fever or throwing up alone at 3am? I probably would have made the same decision if I had been married, but if I had been younger, with a child still at home, that 5% would have seemed much more precious to me. In fact, women with young children are more likely to participate in Phase I trials of cancer treatment.

    Before the last 100 years, people had frequent encounters with death. Loved ones died at home and were prepared for burial by family. Now we sanitize death and pretend it is not waiting for us. We spend huge amounts of Medicare dollars in the last 6 months of life on futile care, when hospice with pain control would be so much better. I personally watched both my parents die miserable, prolonged deaths, unable to help much, even with my knowledge of the health care system. I have a horror of outliving my cognitive function or being unable to take care of myself, but I know realistically that even with advance directives and explicit instructions to my family, it is difficult not to get swept up in the mania to live a little longer (and pay incredible amounts for that dubious privilege). I always remember the day that I objected to the planned triple bypass surgery on my mother, who had been a heavy smoker for 50 years, had intractable and painful diabetic neuropathy, was profoundly depressed, and had just had her second heart attack. Her young cardiac surgeon snarled at me, “Whaddaya want–to have her drown in her own fluids?” At that point I called in the hospital’s bioethicist. My mother agreed to surgery if she could be assured of good pain control, a promise that was repeatedly broken. She died three weeks later of multiple organ failure. Cancer is kinder, because you usually know when death is inevitable. If that time comes for me, I know what to do.

    The views in this post are my own, and do not reflect the views of UT MD Anderson Cancer Center.

12. 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 start, but not enough, and the products don’t necessarily focus on what ends up being most important for maintaining wellbeing or better management of key healthcare problems.

    EMRs have been a bit of a flail: poor user design and created for admin, not clinical care. but I’m not yet ready to give up on all of tech because of them…

13. 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.

14. 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 these relations turn into their fetters. At that point an era of social revolution begins. With the change in the economic foundation the whole immense superstructure is more slowly or more rapidly transformed.”
    (Karl Marx, Preface to A Contribution to the Critique of Political Economy)

    So no Peter1, to the classical Marxist like me, there is only one type of revolution.

15. 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 is well suited to build a grassroots movement transforming Medicare reimbursement (other than peer-to-peer networks and tweeting the scandals), but I can think of lots of ways that tech could make it easier for clinicians to provide good geriatric care. This would free us up to focus on the high touch aspects of the care that tech can’t replace. Or that’s my hope, anyway.

    I do want to briefly apologize for presenting such a limited snapshot of your book in the post. The book deserves a more thoughtful and detailed commentary…lots to think about and talk about in what you wrote.

16. “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?

17. “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.

18. 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 known. I hope tech firms will think about ways to build a grassroots movement of caregivers who can transform the way Medicare reimburses — to pay better for “high touch” Slow Medicine approaches like physical therapy, geriatrics, and group support, and less for “high tech” fixes like defibrillators, etc.

19. “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/

20. Thanks Maneesh and Afik, your encouragement is greatly appreciated!

21. 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 back a certain amount of control.

22. 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…

23. 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 needs for the aging population…no national health problem is more urgent to solve. So, let’s hope the revolution bears fruit within the next…10 years?

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

25. 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.

26. 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 Medicare and other institutions to radically change.

    Sadly it all takes time, and even the technologies that you didn’t mention that are aimed at family caregiving (which are out there and were on stage in various places, even if I know are not as common as the trendy new motion sensors) will eventually replace the mess known as care today.

    So keep pushing for your vision, but stay patient and avoid the guillotine…

27. “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 is no hope on the horizon.

28. 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.

29. 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.” 🙂