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In Search of Technology that Improves Geriatric Care

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7 Books to Help Us Improve Healthcare for Aging Adults

It’s December and 2014 is right around the corner. I’ve been reflecting on what I’ve learned over the past year. It’s been a bit more than a year since I launched my consultative micropractice and started blogging about geriatrics and technology. In the fall of 2012, I wasn’t really sure where any of it was going to go.

Now, as I look back on these 15 months, I see that it’s basically been a writing and learning sabbatical. (My practice is very part-time which is perfect since this give me time for writing/learning/small kids.) I’ve followed the digital health crowd and learned about tech innovations in healthcare and aging. I’ve finally learned to use Twitter. I joined a vibrant & inspiring community via the Society for Participatory Medicine.

And I’ve spent a lot of time blogging: this will be post #98 on GeriTech (a handful are by guest contributors), plus now I am writing about geriatrics for caregivers over at drkernisan.net. (I’ve stopped writing for Caring.com, but still want to write for caregivers.)

Why blog and why write? Because it’s a terrific way to do three things: a) sort out your thoughts on a topic; b) share what you’ve learned with the world; and c) engage in conversation with others interested in the topic.

In the spirit of these three things, in this post I want to share a list of the books that have influenced my thinking and writing the most over the past year. If you have a little extra time during the holidays, these are books that I’d recommend reading.

My personal goal in doing all this reading, writing, and learning?

It’s the same as it’s been since I started geriatrics fellowship in 2006:

Professional goal: to work on scalable ways to improve healthcare for aging adults, by making effective geriatric care more doable for all involved — patients, caregivers, and front-line clinicians.

To make more effective geriatric care more doable by more people, we’ll need to leverage technology, we’ll need to give clinicians the tools and working conditions to do their best work, we’ll need better systems of care, and we’ll definitely need to empower and support aging adults and their caregivers.

Wondering what I mean by “geriatric care”? I mean health care and medical care that is adapted to be a better fit for aging adults. This means healthcare that is adapted to things like increasing physical and cognitive vulnerability (usually a combo of aging and damage from chronic diseases), multi-morbidity, development of geriatric syndromes, increased reliance on others to manage life and health needs, and eventually some kind of decline and death. (The last two factors create a lot of stress on families and relationships.)

So effective geriatric care is healthcare that helps people — and their care circle — navigate these complications of health in late life. Needless to say, although older adults get a lot of healthcare, we could argue that often it’s not very effective in meeting their needs. (Read Knocking on Heaven’s Door, which I list below, and you’ll see what I mean. You probably know lots of older people who’ve been through similar experiences too.)

And now that I’ve hopefully clarified what drives me to find something interesting professionally, let me share my reading list.

Books You Should Read

Again, these are books that I thought offered valuable insights regarding how we can make effective geriatric care more doable for patients, caregivers, and front-line clinicians. In no particular order, I highly recommend:

  • Drive: The surprising truth about what motivates us, by Daniel Pink. This book summarizes what researchers have learned about what motivates people, especially at work, and explains the distinction between extrinsic motivators and intrinsic motivators. It also explores what kind of work is better suited to extrinsic versus intrinsic motivators. Intrinsic motivation is great for creative problem-solving, and is fostered by autonomy over things like time, team, and task.
    • Relevance: I believe that geriatric patients need a good PCP, and that the PCP needs to be able to step up and do work that is cognitively and emotionally demanding. (In this THCB post I provide specifics on the challenges of the job.) It’s hard to do this work without intrinsic motivation. Today’s front-line clinical environment doesn’t offer good conditions for this, and although teams in principle offer a lot of benefits, we are still learning how to make this an environment in which physicians thrive and can do their best work.
    • We shouldn’t forget that no matter what the policy people and system re-designers do, ultimately healthcare only changes when the people on the front-line start doing different things with each other and with patients. Understanding how different forms of motivation affect those behavior changes is crucial.
    • Right now many incentives affecting physicians are more oriented towards extrinsic motivation, although recently there’s recently been some interest in addressing our internal motivation.
    • Astute observers will notice that I’ve traded economic security for autonomy and a more fulfilling engagement with my professional goals. (But I am only an N of 1.) You can also read this GeriTech post and this one for more of my thoughts on Drive
  • Thinking, Fast and Slow, by Daniel Kahneman. Kahneman is a psychologist whose work helped create behavioral economics; his research demonstrated that people usually aren’t rational actors when it comes to economics, or really anything else. My favorite parts of this long book were the early chapters that described studies showing how people think either in a fast way (relies on biases & heuristics, doesn’t take much energy) or a slow way (deliberate, thoughtful, and much more of an effort). The book also explains how people often respond to different types of statistical information, and Kahneman demonstrates how different framing of information leads people to make very different choices.
    • Relevance: This is important both in terms of understanding provider behavior and patient behavior. For providers, especially physicians in the outpatient setting, it seems to me that most are using fast thinking during most of their work time. But slow thinking seems required if one is going to do things like engage in shared decision-making, or even individualize medical care according to the patient’s circumstances. This slow thinking takes time, and depletes one’s energy. So if we want physicians to be doing this kind of mental work, how do we create the working conditions to support this?
    • I have noticed that many, especially those digital health optimists, seem to think that people are usually rational actors in terms of prevention, etc. Ha. Read this book and learn more about how people do think about risk and statistics. 
  • Switch: How to change things when change is hard, by Chip and Dan Heath. This book I actually read in the fall of 2011, when I was a struggling medical director at a FQHC site. It was recommended to me by a very seasoned physician leader at Kaiser, and wow, it is great reading for those who want to change things. My favorite take-away is the metaphor of people being like a small rational rider atop of a big emotional elephant walking a certain path. The emotional elephant is strong and drives most of what people do and feel. The rider is rational but tires easily as it’s hard work directing the elephant, especially if you need to get it to do things it doesn’t like. To get people to change, you need to direct the rider, soothe the elephant, and think about smoothing the path as much as possible.
    • Relevance: Much of making change and improvement in healthcare is ultimately about changing the behavior of those on the front-lines: the clinicians, the patients, the caregivers. In my experience, clinic leaders often give clinicians rational reasons for doing things without addressing the emotional resistances people have…or the substantial workplace impediments that make the path hard.
    • I would especially recommend Switch to those people who are grousing about how doctors and/or patients don’t want to change. A more nuanced understanding of what drives behavior and how to make change easier is probably more constructive. For more on this issue, you can see the post I wrote on creating conditions for humanity in the hospital.
  • Medicine in Denial, by Lawrence and Lincoln Weed. There is so much good stuff in this book that it took me a three-part series in The Health Care Blog to lay out my key takeaways. The Weeds cogently identify a number of crucial and dangerous flaws in the often idiosyncratic ways we practice medicine now. They also provide a strong critique of evidence-based medicine, and instead propose that the medical care be focused on helping patients individualize their own care. Their vision of healthcare as a more transparent, reliable and consistent system that can be navigated with independence by patients is compelling. A core concept they propose is that we should use technology and “knowledge coupling”  evaluating and managing patient problems, as well as documenting it all; this would be more reliable and reproducible than our current clinician-led methods of diagnosis and management.
    • Relevance: Geriatric patients are especially relevant for the Weed’s ideas. They have a lot of medical problems that persist over time, so a more reliable method of documenting and following their problems is sorely needed. And they really need individualized care.
  • The Innovator’s Prescription, by Clayton Christensen & co-authors. I’m only halfway through this book but I like it much more than I thought I would. It explains disruptive innovation, which is “the process by which complicated, expensive products and services are transformed into simple, affordable ones,” and offers examples of how other industries have been transformed by such innovation (e.g. computers). It also explains why it’s basically impossible for leading institutions in an industry to succeed at this kind of innovation; instead it comes from small outsider upstarts, who start by offering a product that is not as good to a group that the leading institutions are neglecting. And of course, the book applies all this innovation theory to healthcare as it is now and as it’s changing. (Think of MinuteClinic: we docs think it’s not as good but it’s offering convenient treatment of minor urgent care problems to people who are in a hurrry or under-insured.)
    • Relevance: I started this blog in large part because I believe that technology, among other forces, will be essential in making effective geriatric care more doable. Within the tech and digital health community, I hear a lot about “disruption” and “innovation” so it’s been useful learn some basic theory and history about innovation and changing established industries.
    • It’s especially interesting to see physician services broken down into business models such as 
      • “solution shop” activities: requires creative thinking & usually charges fee-for-service (sounds like what I do!)
      • “value-adding processes”: repetitive work that thrives on a good process; many surgeries & procedures fall into this, as does some chronic disease management. Because the work is predictable and process-driven, one can charge fee-for-outcome effectively.
      • “facilitated network” business models: I haven’t gotten to the part of the book where they explain how this works for healthcare, but seems these are network industries that make money through membership or transaction-based fees, and the dependency among participants is the main product delivered. (Sounds like Airbnb to me, or even some of the peer-to-peer online patient communities.)
    • According to Christensen, many of our current inefficiencies in healthcare are due to us mixing up these business models in a single institution (such as hospital) or a practice. Remains to be seen just how healthcare will continue to evolve and be disrupted over the coming years. (The book was published in 2009 and I’m not sure much has materially changed on the ground since then although there certainly has been a lot of activity at the policy and reimbursement level.)
  • Let Patients Help, by Dave deBronkart (aka e-Patient Dave). This is not as well-written as most of the other books on this list, but it’s still a very important book as I haven’t come across anything else that concisely explains what participatory medicine is and why it’s important. This is also a good book if you would like to learn more about e-patients, and how they are trying to change healthcare. 
    • Relevance: Although today’s geriatric patients are unlikely to embrace the e-patient approaches en masse, I’ve been hoping for years that their boomer children would do so on their behalf, as this could generate major improvements in quality of care for the elderly. After all, we can urge front-line PCPs to modify their prescribing habits and otherwise implement geriatric approaches, but it’s quite possible that the requests of proactive caregivers will bring on changes more quickly.
    • I do believe there is also a massive culture shift underway which is redefining the relationship between patients and providers. It started with the Internet providing easier access to health information and peer communities, and we are rapidly approaching a time when patients will have full access to all their health information, including our clinical documentation. The e-patients are helping spur this culture change, in which the relationship between doctor and patient will become a more balanced partnership. This is long overdue and overall to be welcomed, but it will create important changes in work of front-line clinicians, so if we are to support physicians effectively collaborating with older adults & their caregivers, we need to keep these culture changes in mind. 
  • Knocking on Heaven’s Door, by Katy Butler. Butler wrote a must-read NYT magazine article in 2010, titled “What broke my father’s heart.” (The meta-snippet in Google reads “How a putting in a pacemaker wrecked a family’s life.”) This book is an expansion of her magazine story. It both describes the challenges of helping her father through his last years of declining health, as well as the history of medicine’s changing relationship to death and dying.
    • Relevance: This is a book about geriatrics. Reading it, you can see what it’s like to go through those last few years of life from the perspective of a family, and it really brings home just how much caregivers do, and the stresses they endure. Butler also does a good job of explaining some of the underlying history, policy, and reimbursement issues that have created a system of healthcare for elders that generally does not bring them the right care at the right time.
    • We sorely need tech solutions designed to meet the most important needs of families like the Butlers. For more on this issue, see this post I wrote about Health 2.0 and wishing there was more tech to facilitate effective geriatric care.
And that’s my list! If you read any of these books, I’d love to hear your thoughts on how we might apply these ideas to improving healthcare for aging adults.
Last little comment on technology and reading: this year I finally started using a tablet device and by far the best use I’ve found for it is reading non-fiction books. Being able to digitally highlight and annotate the text makes it much easier to review those highlights.

The ePrognosis App: On Life-Expectancy & Healthcare Decision-Making

[This post was first published on The Health Care Blog on 11/22/13.]

Last month an intriguing new decision support app launched, created by experts in geriatrics and palliative care. It’s meant to help with an important primary care issue: cancer screening in older adults.

Have you ever asked yourself, when considering cancer screening for an older adult, whether the likely harms outweigh the likely benefits?

Maybe you have, maybe you haven’t. The sentence above, after all, is a bit of wonky formulation for the following underlying questions:

  • How long is this person likely to live, given age and health situation?
  • Given this person’s prognosis, does cancer screening make sense?

The first question seems like one that could easily occur to a person — whether that be a patient, a family member, or a clinician – although I suspect it doesn’t occur to people perhaps as often as it should.

As for the second question, I’m not sure how often it pops up in people’s minds, although it’s certainly very important to consider, given what we now know about the frequent harms of cancer screening in the elderly, and usually less frequent benefits.

Furthermore, there is abundant evidence that “inappropriate” cancer screening remains common. “Inappropriate” meaning the screening of people who are so unwell and/or old that they’re unlikely to live long enough to benefit from screening.

For instance, one astounding study found that 25% of physicians said they’d order colon cancer screening for an 80 year old with inoperable lung cancer. So it’s clear that improving the decision-making around cancer screening would help improve healthcare safety, quality, and value.

Enter the ePrognosis Cancer Screening app, which is the first app created by the UCSF-based ePrognosis team. It’s free in the iTunes store, and according to co-creator Eric Widera, a geriatrician and colleague of mine, it was designed to be used by the public as well as by clinicians.

The app basically works like this:
  1. You tell it whether you’re interested in screening for breast cancer, colon cancer, or both.
  2. The app asks you 15 questions about yourself, your health, and whether or not certain activities are difficult for you. (The questions are a combination of the Lee and Schonberg mortality indices; see here for the questions and relevant scholarly citations.)
  3. You are then presented with a statement on whether cancer screening is recommended, along with a nifty speedometer graphic illustrating the balance of harms vs. benefits.
  4. If you click “Learn more” you are shown a series of pictographs illustrating information on expected harms and benefits of screening, along with information on what proportion of similar people will die over the next 10 years whether or not they get screened for cancer.
  5. You can also click share and reportedly send the report to another person. (Note: I wasn’t able to get this to work for me.)

For more information on the app, including some good screenshots, you can read theGeriPal post introducing the app.

Using prognosis: From research to ePrognosis to…app?

So will the app work as its creators hope? Meaning, will it help patients and clinicians make better decisions about cancer screening in older adults? And will it reduce inappropriate cancer screening in older adults?

Prognosis is, after all, a thorny topic. Even if you can get decent prognostic information at the time you need it, going through discussions and decision-making based on this information is not easy. For instance, this qualitative study of older adults found that although most participants were open to discussing life expectancy, about a third perceived such discussions as not useful, or even harmful. (Interestingly, 64% of participants felt that their physicians could not correctly estimate their life expectancy.)

The ePrognosis project itself was meant to address the first part of the challenge: the fact that practical prognostic information is hard for front-line clinicians – and regular people — to find. Consider this: even today, UpToDate has no topic page on how to estimate life expectancy in older adults, despite many guidelines now urging clinicians to factor prognosis into medical decisions. (For a useful slideshow on why we should use prognosis, see here.)

Instead, UpToDate has a page titled “Communication of Prognosis in Palliative Care”, authored by UCSF’s Alex Smith, a co-creator of ePrognosis. This resource has terrific content on how clinicians can discuss prognosis, but because of its title, may not be easily spotted by doctors searching for a quick way to figure out life expectancy. (“How to talk to patients about how long they’re likely to live” might catch more notice among generalists.)

I myself like the ePrognosis website in concept. That said, I recently found myself sheepishly admitting to Alex that I’ve hardly ever used it. Why? Mainly because my patients tend to be quite elderly and frail, and I feel that I’m already incorporating a sense of their limited life expectancy into my recommendations and conversations with them.

And herein lies the rub: the clinicians who think of using ePrognosis, or of incorporating life expectancy into their decision-making, are probably not the ones who most urgently need to use something like ePrognosis. (Not that we’re perfect – I’m sure using more decision support would help me — but at least we’re not the type to order cancer screening on an 80 year old with inoperable lung cancer.)

In general, the ePrognosis story illustrates a common challenge in improving healthcare quality: the problems that experts see at the population level (excess cancer screening in frail elders) are experienced very differently by the clinicians and patients on the ground (clinicians and patients have historically had enthusiasm for screening).

But changing the behavior of individuals – which is what you need to improve a quality problem – is very hard, especially if people remain embedded in their usual environments. Although expert guidelines and advice do have an important role to play, it’s usually not nearly enough to counter the habits and attitudes of the people in the trenches.

Still, when it comes to better healthcare for older adults, creating the tools to calculate and communicate life expectancy is a good start. Once a tool exists, it becomes possible to see how people respond to it, refine it, improve it, and also think of how to make it more available to the right people at the right time. One could even imagine certain tools being embedded into the clinic processes that nudge clinicians and patients towards (or away from) certain actions.

Now, where do you think we should go from here, if we want to use prognosis to improve healthcare, and healthcare value, for older adults? The creators of ePrognosis are looking for feedback and suggestions as to next steps. So check out the ePrognosis website, try out the app, and share some thoughts in the comments.

I just plugged information on a current elderly patient into the ePrognosis Gagne index and it predicts a 30% chance of death in the next year. Hm… perhaps I’ll reread that UpToDate page on discussing prognosis, as this patient is due for an advance care planning conversation. That page describes a five step process for discussing prognosis.

Should that be in an app?

[There are some interesting comments on this post at THCB; add your thoughts either here or there.]

Aging 2.0: On Engaging Innovators & 11 Startups

[This post was first published on GeriPal on 11/25/13.]

If you are interested in the intersection between aging and innovation, these certainly are intriguing times.

Last Thursday I attended the kickoff event for Aging 2.0’s brand new GENerator program. This is “a new founders program that supports the most promising entrepreneurs working to enhance the lives of older adults and improve long-term care.” (Which I think means this is a business accelerator, but after only a year blogging about digital health innovations, I can’t promise to have mastered all the business lingo.) 
Despite the whopping size of the boomer market (see this terrific Bloomberg article on how business has so far struggled to tap it), this seems to be the first accelerator focused on serving the 50+ demographic.
I found myself impressed both by the growth of Aging 2.0 — an organization co-founded by a gerontologist only 18 months ago — and by the offerings of the eleven companies chosen. It’s encouraging to see the power of innovation and technology really focusing on the problems affecting older Americans, and those who serve them.
Of course, I also find myself with some reservations. I think of myself as a public-health geriatrician, and as such, my primary interest in these new innovations is less about whether there’s a good business market, and more about whether or not these offer good, practical solutions to the more important health and social problems affecting aging adults.
There is no question that entrepreneurs are great at innovation. But to succeed they also need to be great at selling their product. Businesses involved in healthcare or other socially-minded arenas always proclaim that they are doing good things for individuals and for society. Which sometimes is true but often it’s not quite as true as the business says it is, or as the business would like it to be. In the end, a startup must satisfy its investors. And an accelerator must satisfy its startups and investors.
So what does this mean for those of us professionals with expertise assessing social value and healthcare value? It means we should get in there and plan to constructively engage with two crucial groups. One group is the the innovators themselves, who will be interested in our expertise and feedback (although once they have a product at market they’ll probably be ambivalent when we raise concerns). 
The other group is the public to whom these products are being marketed. We can and should equip ourselves to help the public assess and understand the real health and social value (or at least, likely value) of these innovations that they are being invited to purchase. 
This public, needless to say, is quite a large group. It encompasses the 50+ demographic, as well as those offering services to this group, including long-term care and senior housing providers. And the sheer size and diversity of the 50+ age group is really something: the US Census data shows that in 2011, the 50+ population (civilian, non-institutionalized) was 98 million people. 
Of those people, many are family caregivers worried about an aging adult. Others are themselves in need of products and services to help cope with chronic illness, cognitive problems, or physical frailties. And of course, a large group of boomers is eager to maintain health and wellbeing for as long as possible. 

11 Startups chosen by Aging 2.0

For its inaugural GENerator program, Aging 2.0 chose eleven companies. I heard each give a short talk last week. Here are capsule summaries, based on what I heard, along with a few extra thoughts. 
  • BrainAid: smartphone or tablet app with patented software meant to help people compensate for executive dysfunction. Originally designed to help people with brain injury or stroke, the company believes its software can help people with early Alzheimer’s or other neurodegenerative cognitive impairment as well. Company has been working with the VA.
  • CareLinx: online marketplace allowing families to find, screen, hire, and pay in-home caregivers without going through an agency. (I wrote about CareLinx last year; still think it’s a promising idea although I have no idea how well it’s actually working out for the families and paid caregivers involved.)
  • CareSolver: a free online platform that provides customized tools to help family caregivers manage the needs of aging parents or other loved ones. This is right up my alley given my long interest in caregiver education, so I will probably try this soon. Of note, they apparently offer a Beer’s criteria med checker (something I’ve said we need in previous GeriTech posts).
  • Life2: predictive analytics company focusing on aging. From the short presentation provided, seems to me they might focus on helping LTC providers identify residents at increased risk, along with offering support in mitigating the risk. Suspect mitigating risk will end up being harder than identifying those at risk.
  • Lift Hero: “Medical Trips Made Easy,” says the website. Connects seniors who need rides with off-duty EMTs who provide door-through-door service to appointments. (Having seen elderly patients struggle to get to and from the curb, that “through” could be important.) This could be a very useful service although if the passengers are on average frail enough to benefit from EMT drivers, or have cognitive impairment, I certainly hope clinicians will have a way to connect with the care circle regarding the visit. (Often the person accompanying the older patient is instrumental in providing extra history, or in helping relay instructions to the care circle.)
  • MyGrove: This one flummoxed me a bit so I’ll just quote the blurb passed out at the event: “a multimedia marketplace and social engagement platform tailored for Active Adults and their communities.” If you, like me, aren’t sure what an Active Adult is, it’s apparently a term used to refer to people aged 55+. (What to call Active Adults when age and illness render them less active? I don’t know.) Whatever this product is, it sounds like they are targeting the “young old” who aren’t yet close to needing geriatric expertise.
  • OpenPlacement: platform designed to help seniors, families, and discharge planners find and choose among rehab or residential placements more easily. I assume this is modeled on OpenTable, although obviously placing seniors is more complicated than making a restaurant reservation. Should be helpful to families and discharge planners facing transitions in care, since right now families often find it’s a nightmare to figure out who accepts their insurance, has beds available, offers certain features, etc.
  • Sabi: Per Google, the “pill box and walking cane company.” Per Sabi, a creator of products that improve day-to-day life with “superior functionality and design.” The website reminds me of the dilemma many companies face: how to sell products to older adults without reminding them that they are older? Still, the products really are attractive and look quite functional too.
  • Tapestry: App for web and mobile which simplifies social media for older adults. Meant to help families stay connected, by creating an easy interface for seniors to view Facebook photos, email, photos, etc. Currently has a free basic plan or for $5/month offers unlimited messages and photo storage. In general I think this kind of service will ultimately very useful to many older adults. Almost every older person loves to get messages and pictures from family, but navigating a standard tablet can be overwhelming to some, either because they are not tech-savvy or because they are cognitively impaired.
  • True Link: A caregiver-managed debit card allowing personalized spending controls and with fraud-protection features. The founder said that every year seniors lose $52 billion to scams and fraud (!); True Link is meant to offer vulnerable seniors a way to spend without putting themselves at excess financial risk. Caregivers can block spending on certain merchants or types of merchants (i.e. sweepstakes.) I could see this being a great option for seniors with cognitive impairment, and wonder if it will be of interest to financial trustees and fiduciaries. For families, the hard part will be bringing up their concerns re finances to an older loved one; proposing this option likely will be dicey. 
So there you have it: eleven ideas meant to make life better for older adults and their caregivers. Will they take off? Will people use them? Will people like them? (And how will we know if people like them? Hopefully users will have some way of posting reviews.)
Last but not least, will these improve outcomes in terms of wellbeing, function, avoiding morbidity, and reduction of caregiver stress?
We should find out the answers to at least a few of these questions over the next year or two.

And we should think about giving the innovators, as well as the public, constructive feedback on these products. They surely aren’t perfect, but they are a step in the right direction and most of them are trying to meet real needs of aging Americans.

In the meantime, if you’re a clinician or work on healthcare for older adults, which of these ideas do you find most promising?

[Disclosure: I have no financial ties to any of these companies, or to Aging 2.0.]

What Academics Can Learn From Medicine X

[This post was first published on The Health Care Blog on 10/25/13.]

A few weeks ago, I went for the first time to Stanford’s Medicine X conference. It’s billed as a conference that brings a “broad, academic approach to understanding emerging technologies with the potential to improve health and advance the practice of medicine.”

Well, I went, I saw, and I even briefly presented (in a workshop on using patient-generated data).

And I am now writing to tell you about the most important innovations that I learned about at Medicine X (MedX).

They were not the new digital health technologies, even though we heard about many interesting new tools, systems, and apps at the conference, and I do believe that leveraging technology will result in remarkable changes in healthcare.

Nor were they related to social media, ehealth, or telehealth, even though all of these are rapidly growing and evolving, and will surely play important roles in the healthcare landscape of the future.

No. The most remarkable innovations at MedX related to the conference itself, which was unlike any other academic conference I’ve been to. Specifically, the most important innovations were:

  • Patients present to tell their stories, both on stage and in more casual conversational settings such as meals.
  • Patient participation in brainstorming healthcare solutions and in presenting new technologies. MedX also has an ePatient Advisors group to help with the overall conference planning.

These innovations, along with frequent use of storytelling techniques, video, and music, packed a powerful punch. It all kept me feeling engaged and inspired during the event, and left me wishing that more academic conferences were like this.

These innovations point the way to much better academic conferences. Here’s why:

The power of patient presence

I wasn’t surprised to see lots of patients at Medicine X, because I knew that the conference has an e-patient scholars program, and that many patients would be presenting. I also knew that the director of MedX, Dr. Larry Chu, is a member of the Society of Participatory Medicine. (Disclosure: I’ve been a member of SPM since last December.)

I was, on the other hand, surprised by how powerful it was to have patients on stage telling their stories.

How could it make such a difference? I am, after all, a practicing physician who spends a lot of time thinking about the healthcare experience of older adults and their caregivers.

But it did make a difference. I found myself feeling more empathetic, and focused on the patient and family perspective. And I felt more inspired to do better as a physician and as a healthcare problem-solver.

In short, having patients tell their stories helped me engage with the conference presentations in a more attentive and meaningful way.

Now, some will surely be tempted to wave this off as a gauzy touchy-feely experience that is peculiar to the fruit-cakes of the Bay Area; a nice conference touch that isn’t materially important to the purpose of an academic conference.

Academics come to conferences, after all, to tell each other about interesting and important developments in their field, so that they can return to their usual environment and do better work. Most experts probably think they already know enough about what happens to patients, or they think it’s more important to hear from other experts than from the patients.

But it turns out there is some psychology research to back up my own experience: studies have found that concrete examples help ideas and concepts stick. They can also help people solve certain problems faster. For instance, according to “Made to Stick,” most people find it easier to make a list of white objects found in the refrigerator than of white objects overall. Even though the universe of white objects is bigger than that of white objects found in fridges, our minds do much better when a fridge is specified because having a concrete item to anchor our thinking allows us to generate the white objects much faster.

There’s also the issue of “empathy for the end-user,” which is a core tenet of the design thinking approach to solving problems. In healthcare, the end-users are the patients (and also the front-line clinicians) who are supposed to eventually benefit from all the research and hard work of the academics.

Imagine if all academics left conferences feeling greater empathy for the end-users of their brainy thinking, and with concrete examples to help them focus their academic efforts.

Would we end up doing better work serving society? I think we would.

The power of patient participation

It’s one thing to invite patients to tell their stories, and to actually listen when they speak.

It’s another altogether to welcome them as active participants in solving healthcare problems, and in this arena the MedX conference sets an important example that all academic conferences should consider copying ASAP.

At MedX, patients presented new technologies and solutions that they’d helped create. (Needless to say, these are often more patient- and person-centered than what we doctors and academics might come up with on our own.)

Patients exchanged thoughts and ideas with healthcare professionals in panel conversations held on the main stage. In the workshop I helped present on patient-generated data, small groups consisting of patients, clinicians, and technologists brainstormed ways to better incorporate patient-generated data into clinical care. (The group I was facilitating came up with some ideas I’d never thought of; seven heads with complementary perspectives are better than one.)

In fact, the entire first day of MedX was titled the “Patient neXt Symposium,” and patients comprised one of MedX’s three advisory boards (the others being a scientific advisors board and a “thought leaders” advisory board).

In other words, MedX’s approach takes to heart the phrase “Let Patients Help,” which is the title of e-Patient Dave’s recently published book on how patients can and should meaningfully participate not only in their own healthcare, but in improving the healthcare system. (See this TED video here for Dave’s take on patients being the most under-used resource in healthcare.)

Now, it’s true that most patients at MedX would probably describe themselves, and be described, as “e-patients,” a term that just last week drew a perplexed look from at least three of my colleagues in academia to whom I was describing my MedX experience.

And there is some truth to the common objection that I hear: “But those e-patients aren’t like most patients. They’re more motivated, more medically sophisticated, and often of higher socio-economic status.”

True. And still, even though these e-patients may not be entirely representative of all patients that we serve in healthcare, it still seems clear to me that we are much better off having e-patients at conferences rather than no patients at all.

After all, if our systems and solutions don’t even work for the patients with extra energy and motivation, how will they be manageable for those with fewer advantages?


More on MedX

A few other notable features of MedX:

Compelling multi-media presentations. Very few dry bulleted PowerPoint slides here! At MedX, storytelling seems to be encouraged and guess what, it’s quite an effective way to make an impression, especially when combined with well-made short videos and music.

In reality, I think it would be a stretch for most academics to learn multimedia techniques and attempt to present their points at conferences in a more compelling fashion. However, it’s instructive (and inspiring) to see these techniques in action, as we should certainly learn to use better approaches when it comes to sharing our ideas with the public, or otherwise influencing an audience outside our expert peers.

For those who want to see what MedX presentations were like, you can find videos on their YouTube channel here.

Walk and talks. I’d never seen this at a conference but it struck me as a brilliant twist on the usual stand-and-network routine. After all, walking is healthier, and can even clear the mind and lead to more creative conversations.

Social media extension of the conference. Not only were conference attendees tweeting away (myself included), but many other people followed the conference via Twitter (#medx) and were even invited to submit questions for panelists via Twitter.

Warm, friendly, inspiring atmosphere. I feel almost a little silly mentioning this, but it did feel notable to me! I think some of this is the tone that Larry Chu sets, and some of it is that it’s a relatively small gathering with many people who are glad to see each other or meet each other. Artist and patient advocate Regina Holliday not only painted up a storm, but led a group in singing a song about caregiving. Need I say more.

But missing at MedX: Not many older patients with mundane chronic illnesses, i.e. the kind of Medicare patient with multimorbidity that I often write about. Hope to see some arrive at future conferences. For now, less common diseases and cancer are especially well-represented among the e-patients at MedX. (One e-patient present is allergic to his own semen; now there is an unusual condition although spending months with non-specific symptoms while being blown off by doctors is unfortunately not so unusual.)

Summing it up

Stanford’s Medicine X describes itself as “a catalyst for new ideas about the future of medicine and emerging technologies.”

It is this, but mainly it struck me as a catalyst for new ideas about what an academic medical conference can and should be, especially in these days of new technologies and shifts in the culture of medicine.

In particular, the Medicine X conference demonstrates how the presence and participation of patients makes a medical conference much much better, mainly by adding a much needed dose of inspiration and reality-grounding, as well as crucial perspectives to help us learn and problem-solve.

It is far too easy, as healthcare professionals, for us to get wrapped up in our own expertise and in talking to other experts. Healthcare is ultimately supposed to make the health and wellbeing of regular people better, and in clinical care, we do this best when we establish effective collaborations that enable us to help people with their health concerns.

Patient participation at academic conferences shouldn’t be a luxury, a curiosity, or a special feature unique to Medicine X. It shouldn’t be optional to learn from patients and get their help in solving healthcare problems.

Larry Chu has said he’d love for people to copy his conference ideas. I hope other medical conference organizers do so soon. They might start by studying the MedX conference schedule and the videos on YouTube.

Two Must-reads from JAMA’s Critical Issues in US Healthcare

This week’s JAMA issue is titled “Critical Issues in US Healthcare” and wow, it is a goldmine of good reading for those interested in the state of healthcare today.

So far I’ve read two particularly outstanding articles that I want to recommend. (If you don’t have personal or institutional access to JAMA, apparently you can access JAMA “free for a limited time” by signing up for their JAMA Network Reader.) They are “Reliable and Sustainable Comprehensive Care for Frail Elderly People,” by geriatrician Joanne Lynn, and “The Anatomy of Healthcare in the United States,” by Dr. Hamilton Moses et al.

“Reliable and Sustainable Comprehensive Care for Frail Elderly People.” 

In this article, Dr. Lynn begins by describing some sobering realities:

“As the incidence of sudden and premature deaths has declined in the United States, the last part of most individuals’ lives has come to be marked by progressive chronic illnesses and diminishing physical reserves that engender self-care disabilities and frailty. Those who live past age 65 years now average 3 years of self-care disability at the end of life, needing long-term services and supports (LTSS). For those living past 85 years old, nearly half will have serious cognitive decline.”

The problem, as Dr. Lynn points out, is that our fragmented, specialty-driven, acute-care-focused healthcare system is poorly set up to help people during this phase of life, during which frail elders need comprehensive coordinated care that helps them maintain function and quality of life. Furthermore, much of what people need in the last phase of life is not covered by Medicare, e.g. supportive services that help older adults with their living needs.

Instead, Dr. Lynn notes that these needs have been treated as something that individuals should save for, and that families should step up to address. But this is a huge burden for people and families to shoulder, and will be even harder to maintain as the population skews older over the next few decades. (The ratio of working people to dependent and disabled older adults, which was 5:1 in 2011, is expected to  decline to 3:1 by 2029.)

Fortunately, Dr. Lynn has some solutions for us to collectively consider. She begins by urging society to recognize that “frail elderly people have different priorities and needs than they had earlier in life, and their care system must reflect those priorities.” She notes that discussions about living with frailty are largely absent from popular media and public conversation, and calls for “vigorous discussion about how people live well with frailty and how best to die.”

She then goes on to advocate for a number of sensible changes, including individualized medical planning, multidisciplinary assessment and management, new metrics of healthcare quality for this population, and redesign of healthcare delivery models.

Most importantly, she advocates for healthcare services and long-term services and supports to be considered equally important, and ideally integrated:

“A balanced system would give integrated multidisciplinary teams the tools and authority to match services with each frail person’s priority needs. Food, housing, transportation, and direct personal services are often more important than diabetes management or chemotherapy. Elderly people and their families often choose comfort, function, and familiar environments and relationships over small chances for cure or longer survival. Medicare’s open-ended entitlement to medical interventions contrasts with the limited and often inadequate safety-net programs to support personal needs, and this mismatch complicates development of a coherent and efficient service delivery system.”

The issue, of course, would be how to fund and finance such a program. Dr. Lynn doesn’t go into great detail in this article (her prior work has addressed this in the past), although she mentions the possibility of a “MediCaring” ACO taking this on. She also notes that we currently have some models, such as PACE (Program of All-Inclusive Care for the Elderly) and the VA’s Home-Based Primary Care, that we might learn from.

Obviously, this article doesn’t have all the answers for those of us who want better care for an aging America. Still, I like the way Dr. Lynn frames the needs that people have during this last fragile stage of life, and her description of how our current system is really a terrible match. I also agree that we need to have more conversations about those last frail years that many people will undergo.

Will we soon be moving towards a system of integrated healthcare and long-term care for frailer elders? Only if the public demands it, I think…which hopefully they will.

“The Anatomy of Healthcare in the United States“

This is a much longer article, combining very interesting summaries of healthcare data with thoughtful reporting on core trends in healthcare, and insightful commentary on some of the thorny tensions that really might rip the healthcare system apart if we don’t find ways to resolve them.

The juiciest data items are summarized in the abstract:

“The findings from this analysis contradict several common assumptions. Since 2000, (1) price (especially of hospital charges [+4.2%/y], professional services [3.6%/y], drugs and devices [+4.0%/y], and administrative costs [+5.6%/y]), not demand for services or aging of the population, produced 91% of cost increases; (2) personal out-of-pocket spending on insurance premiums and co-payments have declined from 23% to 11%; and (3) chronic illnesses account for 84% of costs overall among the entire population, not only of the elderly.”

In short, we healthcare providers have been charging more and more, and administrative costs have been going up. Out-of-pocket spending stinks for patients but so far apparently hasn’t been rocketing up in the same way.

And surprise surprise, chronic illnesses are driving most of the cost. (Cue the crowd that loves to promote prevention as the main way we should manage the chronic disease.) To my surprise, this analysis found that 67% of the costs of chronic illness are in people younger than 65, but still, I expect that management of chronic disease will be very important to Medicare over the next 10-20 years.

My next favorite part is also nicely summarized in the abstract:

“Three factors have produced the most change: (1) consolidation, with fewer general hospitals and more single-specialty hospitals and physician groups, producing financial concentration in health systems, insurers, pharmacies, and benefit managers; (2) information technology, in which investment has occurred but value is elusive; and (3) the patient as consumer, whereby influence is sought outside traditional channels, using social media, informal networks, new public sources of information, and self-management software.” [Emphasis mine.]

And then there’s the highlighting of problematic tensions currently affecting healthcare. I will again quote the abstract:

“These forces create tension among patient aims for choice, personal care, and attention; physician aims for professionalism and autonomy; and public and private payer aims for aggregate economic value across large populations. Measurements of cost and outcome (applied to groups) are supplanting individuals’ preferences. Clinicians increasingly are expected to substitute social and economic goals for the needs of a single patient. These contradictory forces are difficult to reconcile, creating risk of growing instability and political tensions. A national conversation, guided by the best data and information, aimed at explicit understanding of choices, tradeoffs, and expectations, using broader definitions of health and value, is needed.”

Wow. It really is not often that I come across an article that clearly calls out several big problems and how they are intertwined. (Most articles just hack at one specific part of the problem…kind of the way specialists hack at one specific organ while no one summarizes the key overall problems for the patient.)

The article itself is long and a bit wonky, but overall much more readable than many health policy articles. There’s a very good section summarizing the changing role of patients and consumers in healthcare, and also an interesting section referring to direct-pay and “concierge” medicine.

Regarding team-based care and reallocating healthcare work among professionals, the authors make the following observation:

“…given the shift in orientation to measurement of success with populations rather than individuals, there is a struggle between efforts to manage professionals systematically and efficiently and traditional structures that reflect preference for autonomy, hierarchy, and historically based professional values. These factors, along with increasing patient assertiveness, create the primary management challenge of this era.” [Emphasis mine.]

So true, and what we are going to do about it I really don’t know. In general the strength of this article is in describing the situation and some very important conflicting forces that are keeping healthcare mired in dysfunction; solutions are obviously another (much more difficult) story.

I especially enjoyed the description of an “iron triangle” of conflicting forces:

  • Patient expectations for individual care and personal attention; 
  • Physician autonomy; 
  • Value as defined by policy makers using health status of large groups and aggregate measures of cost.
This is really one of those articles that I will have to reread and highlight more extensively. 
Whew. We have our work cut out for us during these next 10-20 years in an evolving healthcare system.