Levels of Empathy for the User (i.e. the Patient) for Designers compared with Doctors.
Joyce Lee, MD is a pediatrician, diabetes specialist, and Associate Professor at the University of Michigan. She blogs about design and healthcare at joycelee.tumblr.com.
Today marks the beginning of the 8th annual Healthcare IT Week. Healthcare IT Week was started and continues on as a collaborative forum for public and private healthcare constituents to discuss the value of health information technology (health IT) for the U.S. healthcare system.
It is amazing to see how far health IT has come over the last 10-15 years. It has its own week! If, a decade ago, you told people that health IT would be a core focus of investors, entrepreneurs and everyone else in healthcare, the energy produced from the eye rolling alone could power the lights on the Las Vegas Strip for a month. The basic sentiment back then was this: Why would anyone invest in, think about, care about health IT when the consumer Internet was rocking and companies selling online dog food could get started on Monday and sold on Friday for a bull mastiff’s weight in gold?
Today it is quite clear that healthcare IT is a hugely significant part of any success we are having and will continue to have in transforming our healthcare system from one where 30% of cost and care is wasted or the result of error to one where value reigns supreme. We do not believe anyone rational would now argue that healthcare IT is non-essential to improving the quality, productivity, efficiency, cost and outcomes we produce in our healthcare system, although the path is not always smooth.
And it’s about time. Technology has been used to optimize and redefine virtually every key industry except healthcare. Manufacturing has gone from human assembly lines to robotics; banking has gone from tellers to home banking; travel has gone from agents with brochures to Travelocity; and yet in many ways, the fundamental practice of medicine hasn’t changed in decades.
Thanks to extraordinary advances in medicine, critical care providers can save lives even when the cards are stacked against their patients. However, there are times when no amount of care, however cutting-edge it is, will save a patient. In these instances, when physicians recognize that patients will not be rescued, further critical care is said to be “futile.” In a new study, my RAND and UCLA colleagues and I find that critical care therapies that physicians regard as “futile” are not uncommon in intensive care units, raising some uncomfortable questions.
Of course, we’re fortunate to have such fantastic technology at our disposal — but we must address how to use it appropriately when the patient may not benefit from high-intensity measures. When aggressive critical care is unsuccessful at achieving an acceptable level of health for the patient, treatment should focus on palliative care.
In our study, my colleagues and I quantified the prevalence and cost of “futile” critical care in the journal JAMA Internal Medicine. This can be seen as the first step toward reevaluating the status quo and better optimizing care for critical care patients.
After convening a group of critical care clinicians to determine a consensus definition of “futile treatment,” our research team analyzed nearly 7,000 daily assessments of more than 1,000 patients.
We found that 11 percent received futile treatment, while an additional 9 percent received “probably futile” treatment.
So physician-perceived futile critical care is indeed prevalent. But what about the cost?
Thanks to the technologic allure of iPhones replacing stethoscopes, apps substituting for doctors and electronic information substituting for having to actually talk to patients, this thoroughly modern correspondent is all about medical-social media.
Think Facebook for the flu. Twitter for tinnitus. Egads, listen to the typical consultant, pundit or futurist and it’s easy to believe that we’re on the verge of a silicon-based health care revolution.
But then reality intrudes and some skeptic somewhere always asks about the bang for the buck, the juice for the squeeze, the return for the investment. It’s a good question.
For something of an answer, consider the results appearing in a recently published randomized clinical trial by researchers at UCLA. Over a 4 month period, “at risk persons” were recruited for a clinical research trial with on-line ads (Facebook banners, Craigslist, for example) as well as announcements in community settings and venues. Once subjects met the inclusion criteria and had a unique Facebook account, they were randomly assigned to one of two treatment arms.
One treatment arm used a closed Facebook group to coach persons about their at risk condition. The other treatment arm similarly used Facebook to coach persons about general health improvement. Lay “Peer Leaders,” who were given a three hour training session on “epidemiology of the condition or general health subjects and ways of using Facebook to discuss health and stigmatizing topics,” were assigned to lead the groups.
Peer Leaders attempted to reach out to their assigned group persons with messaging, chats and wall posts. Once the link was established, the relationship in the intervention group included communication about prevention and treatment of the condition. At the end of 1, 2 and three months of the study, participants completed a variety of surveys.
Results?
57 individuals were in the control general health group and 55 were in the condition coaching group. According to the surveys, intervention patients were ultimately statistically significantly more likely to agree to condition testing (44%) than the control patients (20%). Because there were few participants, the modest decrease in actual tests or risk behaviors were not statistically meaningful.
This correspondent’s take:
While this was a small study, this is the first time that I have seen reasonable proof that social media by itself can move the behavior needle. On the other hand, this did not result in a patient engagement stampede toward better care or hard clinical outcomes. A majority of participants (56%) did not appear to benefit. Nonetheless, the results do support the inclusion of Facebook-style closed group social media in the suite of population health management services.
What is patient engagement?
Everyone agrees that it’s a good thing, and that we healthcare providers should be fostering it.
How to do so, however, depends on just what you believe patient engagement means.
As Dan Munro recently pointed out, the term “patient engagement” is a hot buzz phrase, and – in the best tradition of such phrases – it’s amorphous enough and appealing enough to mean…just about anything.
Provided that it that makes us feel good about healthcare, of course. Better yet, provided that it casts our favorite healthcare approaches in a favorable light. (Rob Lamberts nicely summarizes some angles of the term here.)
I actually rather liked Munro’s post, titled “Patient engagement: Blockbuster Drug or Snake Oil?” until he got to this part: “We now have some very real metrics around what constitutes real patient engagement and Leonard highlighted two impressive examples.” He goes on to point to two studies of care coordination for chronic illness — one at Kaiser and the other at the VA – and summarizes some key improvements in outcomes.
At Kaiser, they included things like decreased mortality rates and fewer emergencies, as well as improved cholesterol screenings and more people meeting cholesterol goals. With the VA’s Telehealth program, hospital days were reduced and patient satisfaction was 86%. (BTW, I had a VA primary care clinic from 2006-2010, and several of my patients were in Telehealth.)
These are indeed nice results. Still, somehow they didn’t impress me as constituting “real patient engagement.” They seemed more like “real population health management, facilitated by teams, care coordination, communication infrastructure, and organized protocols.”
Shouldn’t real patient engagement mean more than this?
Defining patient engagement
Here’s my current take:
Supporting patient engagement means fostering a fruitful collaboration in which patients and clinicians work together to help the patient progress towards mutually agreed-upon health goals.
Several studies have explored the experience of grief that physicians feel when they lose a patient.
But what about when the patient loses a physician—when the doctor dies?
Dr. K was a well-known child psychiatrist, a loving husband, a father of two, and an irreplaceable support and friend for a number of children suffering from trauma, schizophrenia, bipolar disorder, autism and other challenging psychiatric conditions. Earlier this year, Dr. K passed away in a tragic accident while vacationing with his family. His loss was nearly unbearable for most of us.
Days after the funeral, a colleague of Dr. K inquired into whose care his patients would be transferred. She was shocked to hear that one of his patients, a young teenager suffering from Asperger’s syndrome, anxiety, and depression, had overdosed on his medication and committed suicide the day he heard of Dr. K’s death. It was no coincidence.
Behind the family members, close friends, colleagues, and acquaintances are the physician’s patients. They are part of a separate, almost secret life that the physician leads. And yet, the patient is whom the physician spends more time with than anyone else—they are in some ways the truest reflection of the doctor. While family and others grieve together in collective remembrance, patients often do so isolated, alone, confidential.
Porn stars all across San Fernando were told to put their clothes back on and go home a couple of weeks ago on the news that a 29 year-old adult actress named Cameron Bay tested positive for HIV.
Shortly thereafter, the Internet lit up. News, judgments, and jokes shot left and right in newsrooms as freely as bodily fluids fly on set. Countless reporters and pundits surely worked overtime to do the deep background: who were Ms. Bay’s co-actors, who did what to whom, and inquiring minds want to know: were condoms used? Imagine the frenzied speculation, all those sticky keystrokes.
Don’t get me wrong: the details of the whodunit have medical import. Public health workers need to find who is at risk. Those who are at risk need testing and education including reminders that early tests can be falsely negative and must be repeated. Since this isn’t the first case of HIV among the scantily clad actors of San Fernando, CA, Ms. Bay’s diagnosis demands we try again to get porn stars to practice safer sex. My guess is legal maneuvers will never do much to affect the sex lives of the nude and infamous, but if porn viewers could learn to have fun even with a condom on set there might be a hope.
Twitter captured all this and more. It showed the diversity of our reactions to Ms. Bay and people like her. Some tweets expressed a sense of inevitability:
Some were judgmental:
It may say something about expectations for the Affordable Care Act that the simplistic “just repeal Obamacare” cries of Congressional Republicans are starting to be supplemented by proposals for its replacement.
The most detailed so far is from the conservative American Enterprise Institute, which has published an unexpectedly non-doctrinaire study authored by Harvard professor Michael Chernew and seven other respected academics.
It’s far from perfect, but it’s worth reading.
Structural details of the AEI proposal, modestly titled “Best of Both Worlds,” aren’t always clear (page 1 lists four “principles,” page 5 lists five “priorities”, and page 16 lists three “major planks”), but it does attempt a bipartisan approach, combining ideas from left and right.
Some of these ideas have been contained in other proposals, such as those of Wyden and Bennett and Fuchs and Emanuel (which may damn the AEI proposal in right-wing eyes), and most recently in a THCB piece by Martin Gaynor. They include the elimination of the employer coverage tax preference, the provision of “premium support” subsidies for most individuals, and the establishment of a national insurance exchange. Together, they are designed to encourage individual choice and responsibility and to maximize competition between insurers, while removing some of the inequities of the present system (and of the ACA).
The AEI proposal assumes that eliminating the employer coverage tax preference will result in most individuals obtaining coverage through a national exchange, with national regulation of insurance plans. Current Medicaid eligibles will be included, with the replacement of acute care Medicaid funding by subsidies for conventional coverage. All individuals will be able to choose between fully-subsidized “basic plans” and more generous partially-subsidized options, typically with substantial deductibles tied to income and health status. Insurers will be encouraged to offer multi-year coverage and, unlike in the ACA, medical underwriting will be allowed. The only government financing will be for premium subsidies, to be funded by the additional income and payroll tax revenues resulting from elimination of the employer tax preference and by redirecting federal and state Medicaid payments.
I was a bit surprised by the front-page headline and accompanying article in the weekend Wall Street Journal (IBM to Move Retirees Off Its Health Rolls). The headline and subtext of the article are that IBM is ending health benefits for retirees, leaving them to fend for themselves. But as I read through the specifics that doesn’t appear to be at all what’s happening. Unfortunately, the article’s main impact is to leave an unduly negative impression of private health insurance exchanges.
Retiree health benefits are a big deal, especially for employees who retire before they reach the Medicare eligibility age of 65. A typical early retiree in his or her 50s will face high premiums in the individual market compared to a younger, and typically healthier, person. If they are among the few whose company provides generous coverage they are very lucky.
[On a side note, life is about to get easier for early retirees who have to buy their own insurance, thanks to Obamacare’s banning of medical underwriting and limits on the ratio of premiums charged to older people versus younger ones.]
When a person turns 65 life gets a lot easier on the health insurance front as the federal government takes over the vast majority of costs. As a result, a retiree on Medicare is much cheaper for an employer to provide health care benefits to, since they are essentially just paying for supplemental coverage.
A likely unanticipated consequence of the AMA’s decision to label obesity a disease, even though their own scientific council said not to, is that this might serve as the macguffin leading to furtherance of a protected class of people. This has serious implications not only for employment discrimination, but also for wellness programs, which often hinge vastly overblown claims of being able to help the obese who they almost universally label as “high risk” people.
Well, what if people who are obese, who are no doubt tired of being condescended to, first by wellness companies, and now by the AMA, decide that they are going to seek medical approval to opt out of wellness programs? A study recently published in the journal Translational Behavioral Medicine reports on a highly coercive, electronically monitored walking program for obese people: 17% opted not to participate and another 5% actually got their physician’s approval to opt out. The physician approval to opt out is key to any resistance strategy.
Under the final wellness rules issued by the federal government earlier this year, physician certification that it is medically unadvisable for an employee to participate in a wellness program creates a burden for the employer and wellness vendor. They must provide reasonable alternatives that do not disadvantage the employee in terms of either time or cost and that address the physician’s concerns.
Further, if the employee’s physician disagrees with offered alternative, the employer and wellness vendor must provide a second alternative. The coup de grace is that “adverse benefit determinations based on whether a participant or beneficiary is entitled to a reasonable alternative standard for a reward under a wellness program are considered to involve medical judgment and therefore are eligible for Federal external review.”
Targeting people based on body mass index (BMI) is an intellectually, morally, scientifically, and mathematically bankrupt approach. The AMA’s decision will actually help obese people and advocates for their dignified treatment in the workplace and society start to understand that they can refuse to opt in to these insulting programs and, simultaneously, be protected from penalties. Clearly, this is the opposite of what unsuspecting employers expect when vendors (and their own brokers) sell them these programs: more useless doctor visits, less leverage with penalties…and more employee disgruntlement. Not just the obese will be disgruntled, but also those who have to pay the penalties because their BMI is too high to get the reward but not high enough to get a doctor’s note.
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