Six years ago, just after arriving in Baltimore for a winter conference, I fell sick with fever and a bad sore throat.
After a night of feeling awful, I went looking for help. I found it at a Minute Clinic in a CVS near the hotel. I was seen right away by a friendly NP who did a rapid strep test, and prescribed me medication. I picked up my medication at the pharmacy there. The visit cost something like $85, and took maybe 30 minutes. They gave me forms to submit to my California insurance. And I was well enough to present my research as planned by day 3 of the conference.
Fast forward to this year. After feeling a bit blah on a Monday evening, I developed a sore throat, headache, and fever overnight.
I figured it was a winter viral pharyngitis, rearranged my schedule, and planned to make it an “easy day.” Usually a low-key day plus a good night’s sleep does the trick for me.
For the past several months the Robert Wood Johnson Foundation has been promoting a particular vision– of a Culture of Health in America, where everyone has the opportunity to live the healthiest life possible, no matter their income, or where they live, or work, or play.
With that vision in mind, geriatrician Dr. Leslie Kernisan asks an important question in her Oct 7 Health Care Blog post, “Why #CultureofHealth Doesn’t Work For Me.” She writes: “Is promoting a Culture of Health the same as promoting a Culture of Care? As a front-line clinician, they feel very different to me.”
For physicians treating the chronically ill and patients facing the end of life, good health might seem like a pipe dream. Kernisan and some of her commenters even wonder if the phrase “Culture of Health” could be misconstrued as “blaming the victim.”
Here’s a design approach that I really, really dislike: the scrolling wheel that is often used for number entry in iOS apps:
I find that the scrolling wheel makes it very tiresome to enter numbers, and much prefer apps that offer a number pad, or another way to touch the number you need. (Or at least decrease the number at hand in sensible increments.)
You may think I’m being too picky, but I really think our ability to leverage technology will hinge in part on these apps and devices being very usable.
And that usability has to be considered for everyone involved: patients, caregivers, and clinicians.
Why am I looking at an app to enter blood pressure?
Let me start by saying that ideally nobody should be entering vitals data manually. (Not me, not the patient, not the caregivers, not the assisted-living facility staff.)
Instead, we should all be surrounded by BP machines that easily send their data to some computerized system, and said system should then be able to display and share the data without too much hassle.
But, we don’t yet live in this world, to my frequent mild sorrow. This means that it’s still a major hassle to have regular people track what is probably the number one most useful data for us in internal medicine and geriatrics: blood pressure (BP) & pulse.
Why is BP and pulse data so useful, so often?
To begin with, we need this data when people are feeling unwell, as it helps us assess how serious things might be.
And of course, even when people aren’t acutely ill, we often need this data. That’s because most of our patients are either:
Taking medication that affects BP and pulse (like cardiovascular meds, but many others affect as well)
Living with a chronic condition that can affect BP and pulse (such as a-fib)
All the above
As we know, the occasional office-based measurement is a lousy way to ascertain usual BP (which is relevant for chronic meds), and may not capture episodic disturbances.
When it comes to high blood pressure treatment in the elderly, the plot continues to thicken.
Last December, a minor controversy erupted when the JNC hypertension guidelines proposed a higher blood pressure (BP) treatment target (150/90) for adults aged 60+.
And now this month, a study in JAMA Internal Medicine reports that over 3 years, among a cohort of 4961 community-dwelling Medicare patients aged 70+ and diagnosed with hypertension, those on blood pressure medication had more serious falls.
Serious falls as in: emergency room visits or hospitalizations for fall-related fracture, brain injury, or dislocation of the hip, knee, shoulder, or jaw. In other words, we talking about real injuries and real patient suffering. (As well as real healthcare utilization, for those who care about such things.)
How many more serious falls are we talking? The study cohort was divided into three groups: no antihypertensive medication (14.1%), moderate intensity treatment (54.6%), and high-intensity treatment (31.3%).
Over the three year follow-up period, a serious fall injury happened to 7.5% of those in the no-antihypertensive group, 9.8% of the moderate-intensity group, and 8.2% of the high-intensity group. In a propensity-matched subcohort, serious falls happened to 7.1% of the no-treatment group, 8.6% of the moderate-intensity group, and 8.5% of the high-intensity group. (Propensity-matching is a technique meant to adjust for confounders – such as overall illness burden — between the three groups.)
The methodologists in the audience should certainly read the paper in detail and go find things to pick apart. For the rest of us, what are the practical take-aways?
When it comes to the health care of a frail older person, families really need a good personal health record (PHR) system. So I am once again preparing to take a look at what’s available, in hopes of finding something that I can more confidently recommend to the families I work with. (To see what medical info I urge families to track, see this Geriatrics for Caregivers post.)
I have — yet again — met a family with reams of paper health records. On one hand, they’ve done very well: at our first visit they were able to show me labs, MRI results, and even some specialty consultations from last summer. They even had a hospital discharge summary, although unfortunately not the one from the most recent hospitalization.
And they’d taken steps to digitally organize, having scanned several key items, as well as created an online space providing shared access to their parent’s information.
So this is better than the situation I often encounter, which is that an elderly person has seen multiple outpatient doctors, has been hospitalized in a few different facilities, and no one has a copy of anything handy. (See why new elderly patients are a killer in primary care? If there is no data you fly blind, if there IS data it can take hours to review it.)
Still, there are clearly many ways a little well-designed technology could improve things for this family – and for the doctors trying to help them.
Here are the problems we have right now:
Hard to search the whole pile, whether on paper or via the family’s online repository of PDFs. These were not OCRed and searchable until I manually converted them with my own PDF editor, after which I had to upload them to the patient’s chart in my EMR. Now each file is text searchable (for me), but the pile still is not.
Cannot trend the labs. Figuring out what has happened to this patient’s key lab values over the past year has been very labor-intensive. This remains a problem once the lab data is uploaded to my EMR, because it’s still in PDFs which have to be looked at one at a time. Being the nerdy doc that I am, I’ve spent a fair bit of time creating a note that summarizes the key lab data over time. Ugh. Better than nothing but a far cry from being able to graph and trend the patient’s labs as needed.
Takes ongoing time and effort to get records from the hospitals and other involved doctors. Kudos to this family for being diligent and persistent in asking for copies of everything they can. But wow, it’s a lot of effort for them, and I can tell you that in my practice so far, I’ve generally had to expend a fair amount of energy repeatedly asking for information from other providers. (And then I’ve had to try to organize all this info which comes in as scanned images via fax. Oy!)
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.
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.
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.”
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.
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.)
I assume by now that you’ve heard the news: Google wants to tackle aging. Specifically, they announced this week the launch of Calico, “a new company that will focus on health and well-being, in particular the challenge of aging and associated diseases.”
Because, says Larry Page, with some “moonshot thinking around healthcare and biotechnology, I believe we can improve millions of lives.”
Here is the paragraph that particularly caught my eye:
“The health care community and the business community today share a fundamental interest in finding ways to achieve higher value in health care. The ultimate objective for both communities is to keep people healthy, prevent the chronic illnesses that consume a large fraction of our health care dollars, use medical interventions appropriately and only when needed, and create an economically sustainable approach to the delivery of health care. While we want to foster innovation and novel therapies against disease, we also recognize that, whenever possible, prevention of disease before it is established is the better solution.” [Emphasis mine.]
And therein lies the rub. Whether it’s Google or a high-powered partnership between NEJM & HBR, everyone is enamored of prevention and innovative cures.
Let’s prevent those pesky chronic diseases! Let’s cure aging!
The developers of the app Pain Care, the winner of the Robert Wood Johnson Foundation’s Project Health Design challenge two years ago, have this to say about THCB contributing writer Dr. Leslie Kernisan’s recent post wondering why the winning entries of development challenges have a habit of disappearing and never being heard from again:
We are the app developer. We are also disappointed with the outcome of the app. But I think we also learned valuable lessons here.
One of the challenges small business facing is the need to rapid prototype and test the market, and then move on to another idea when the previous idea fails to gain traction. That is especially true with grant funded projects — they need to “make money” after the grant ends in order to justify continued development effort.
Pain Care was developed in the early days of mHealth, and it was indeed very physician focused — the reason is that we believe we must engage physicians to look at the data. We still hold that belief. It is a learning process for us. We put in our own money to develop the app, and fortunately, won the developer challenge.
We made the app public after the challenge to “test the market” — so to speak. But, as you know, essentially *none* of the pure app-based “patient journal” has turned out to be a success (let alone a financial success). Our app is no exception. It is enormously costly keep the app updated for all those iPhone, iPad, iOS released every year, as well as thousands of Android devices released since then.
So, the app becomes one of those “outdated” apps in the app store, and I think it is quite obvious to users as well. However, I think the app did contribute significantly to the “science” of mHealth. We now understand much more what works and what not in “patient engagement”. Many other “pain management” apps have since emerged, and many have done a better job than ours. I think that was what RWJF wanted when they challenged developers back then.
Today, we do things a lot differently. We no longer release research grant-funded apps to the public. Instead, we run clinical studies to test them in much smaller / controlled groups. We do not attempt to tackle vague “big problems” like general pain management any more — instead, we are much more focused on managing specific diseases that include pain. We are also moving beyond “pure software” and “simple reminders” to engage people in multiple modalities.
All of these would not be possible without the generous award RWJF gave us in picking Pain Care as the winner of one of the first developer challenges.