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Patient Engagement: On Metrics and Meaning

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By Leslie Kernisan, MD

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.

Continue reading…

When Foundation-Approved Apps Founder

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By Leslie Kernisan, MD

What does it mean when an app wins a major foundation’s developer challenge, and then isn’t updated for two and a half years?

Today, as I was doing a little background research on task management apps for caregivers, I came across a 2012 post listing Pain Care as a handy app for caregivers.

Pain is certainly something that comes up a lot when it comes to geriatrics and supporting caregivers, so I decided to learn a little more about this app.

“The Pain Care app won the “Project HealthDesign” challenge by the Robert Wood Johnson Foundation and California HealthCare Foundation,” reads the descriptive text in the Google Play Store.

Well, well, well! RWJF and CHCF are big respectable players in my world, so I was impressed.

But then as I looked at the user reviews, I noticed something odd. Namely, that the most recent one seems to be from April 2012, which is like 2-3 generations ago when it comes to apps.

And furthermore, the app itself was last updated in February 2011. This is like a lifetime ago when it comes to apps.

I decided to download the app and give it a whirl. It’s ok. Seems to be an app for journaling and documenting pain episodes, along with associated triggers. Really looks like something developed by doctors: one of the options for describing the type of pain is “lancinating,” and in a list of “side-effects” (side effects of what? the pain medication one may have just taken?) there is the option to check “sexual dysfunction.” Or you could check “Difficulty with breathing.” (In case you just overdosed on your opiates, perhaps.)

The app does connect to a browser-based account where I was able to view a summary of the pain episode I’d documented. It looked like something that one should print and give to a doctor, and in truth, it would probably be helpful.

Setting snarky comments about the vocabulary aside: this app actually looks like a good start for a pain journal. But it needs improvement and refining, in order to improve usability and quality. Also, although I don’t know much about app development and maintenance, I assume that apps should be periodically upgraded to maintain good performance as the operating systems of iPhones and Android phones evolve.

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Creating Conditions for Humanity in Hospitals

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By Leslie Kernisan, MD

Why aren’t people in hospitals more attentive to the needs of patients?

In a recent post, Dr. Ashish Jha raises this issue as he relates his own story of coming to an ED with a very painful dislocated shoulder. Unsurprisingly, prompt treatment of his pain was deferred while staff diligently completed registration, sent him for an xray, and waited for a physician to see him.

On the bike path where Jha took his initial tumble, people went out of their way to respond to his injury with attention and concern. But as he lay moaning on a gurney in the hospital corridors, waiting for an xray and not yet treated for pain, people avoided his eyes and even walked by a little faster.

What gives? Why aren’t people in the hospital more empathetic and attentive? Is this a “wonderful people, bad system” issue?

In reflecting on his experience, Jha remarks that people seem to leave their humanity at the door when they arrive at the hospital for work, and posits that we get desensitized to suffering. He notes that some workers were able to “break out of that trap,” and responded to him more empathetically when he directly solicited their help and attention.

“It is the job of healthcare leaders to create a culture where we retain our humanity despite the constant exposure to patients who are suffering,” writes Jha.

Culture change is necessary but not sufficient

Culture is important. Yes I’ll admit that I’m usually a bit skeptical when I hear of a plan to tackle a problem through culture change. In my own experience, this has consisted of leaders trying to “create culture” by describing to front-line staff  what they should be doing, and repeatedly exhorting them to do it. (And maybe giving out gold stars to those who do it.)

This, of course, is never enough. Talking the talk does not mean people start to walk the walk, especially if the walk involves a slog uphill rather than an easier stroll down a path of lesser resistance.

If we – whether healthcare leaders or  just concerned citizens who want to see healthcare improve – really want healthcare workers to demonstrate more compassion and empathy while on the job, then here is what we need to do:

  1. We should take seriously the task of understanding what might be interfering with this compassion and engagement. This means not only studying workflow, but also the behavioral psychology of individuals as well as groups.
  2. We should then be serious about creating the conditions that would allow regular human beings to reliably produce the desired behaviors.

Why it can be hard to help people in the hospital

What interferes with showing compassion and engagement? In reading Jha’s piece, I reflected on my own hospital days. Here are the obstacles that I remember, and the impact on me.

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Not Walking Away From Medicare

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By Leslie Kernisan, MD

This past week, the NYT New Old Age Blog featured a post about me and my practice. Titled “Walking Away from Medicare,” it describes my decision to opt-out of Medicare and create a different kind of geriatric practice.

It has generated quite a lot of comments: 163 at my latest count. Most of them judge me pretty harshly. It seems that many people feel that I’m doing this for the money. And that I don’t care about society or older people.

Of course, if you know me or if you’ve been reading this blog, then you’ll know that nothing could be further from the truth. My practice is fairly small, in part because my goal in having this practice was to have a way to keep working with patients and families, while having the flexibility to pursue my other professional interests. Since I started the practice, I’ve spent most of my time writing for this blog, learning about the worlds of digital health and healthcare innovation, and thinking about how we can teach geriatrics directly to caregivers.

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How Patients Can Assess the Quality of Their Outpatient Care

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By Leslie Kernisan, MD

Even before I launched my geriatric consultation practice, I found myself often pouring over another doctor’s outpatient notes, trying to explain to a patient what the other doctor was doing.

Sometimes these other doctors were specialists to whom I’d referred the patient. But often they were simply clinicians – either previous PCPs or currently involved specialists — whose involvement with the patient predated my own.

Not every patient had questions and concerns about what their other healthcare providers were saying, and doing, but a fair number of them did. And family caregivers, in particular, were often concerned that perhaps their older loved one hadn’t been getting the “right” medical care.

These are, in truth, legitimate concerns patients have. In a busy outpatient setting, doctors often don’t have the time to explain the assessment and plan to a patient and family. And in many cases, the care that clinicians provide may not correspond to best practice guidelines – if applicable to the situation – or to the patient’s preferences and values.

So if you are a concerned patient or family member, and you’re not entirely sure about the medical care you’re getting, what to do?

Should you:

  1. Look up the provider’s quality ratings online, through a government, non-profit, or other website?
  2. Figure that the ACO or payer is on top of it, now that we are moving to pay-for-quality and fee-for-value?
  3. See what other patients have said about the provider’s care?
  4. See how many doctors are referring to the provider in question, and assume that if many doctors refer to this clinician, the clinician must be good?
  5. Look up your medical problems online, and try to determine for yourself whether you’d been getting the right medical care?
  6. Get a second opinion from another doctor?

My guess is that most patients and families end up trying one – or both – of the last options. In this post, I’ll explain why I’ve come to believe that facilitating second opinions is integral to empowering patients, and to improving the quality of outpatient care.

Why seek a second opinion

I don’t know about you, but when I’ve found myself trying to solve a problem in which I lacked adequate expertise, I’ve turned to a professional for help. (I haven’t had to do this for medical reasons in the past decade, but have done it for issues such as home renovation and website design.)

And in many cases, after meeting with an expert for a while, I’ve then turned to yet another expert to get an additional perspective on the issue at hand.

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Designing for Caregivers

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By Leslie Kernisan, MD

What user personas do healthcare technology designers and entrepreneurs have in mind as they create their products? And how often is it the family caregiver of an elderly person?

This is the question I found myself mulling over as I wandered around the Health Refactored conference recently, surrounded by developers, designers, and entrepreneurs.

The issue particularly popped into my head when I decided to try Microsoft Healthvault after listening to Microsoft’s Sean Nolan give a very good keynote on the perils of pilots and the praises of platforms (such as HealthVault).

As some know, I’ve been in search of apps and services that can help older adults and their families keep track of lengthy and frequently-changing medication lists. For years now I’ve been urging family caregivers to maintain some kind of online list of medications, but so far I haven’t found a specific app or service to recommend.

Why? Because they all require way too much effort to enter long medication lists. Which means they are hardly usable for my patients’ families.

Could HealthVault do better? Having heard generally promising things about the service these past several months, I signed up and decided to pretend I was the daughter of one of my elderly patients, who had finally decided to take Dr. Kernisan’s advice and find some online way to keep track of Mom’s 15 medications.

Sigh. It’s nice and easy to sign up for HealthVault. However, it’s not so easy to add 15 medications into the system. When I click the “+” sign next to current medications, I am offered a pop-up box with several fields to complete.

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Medicine in Denial: What Larry Weed Can Teach Us About Patient Empowerment

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By Leslie Kernisan, MD

[This post is the third and final part of a commentary on “Medicine in Denial,”(2011) by Dr. Lawrence Weed and Lincoln Weed. You can read Part 1 here and Part 2 here.]

It seems that Dr. Larry Weed is commonly referred to as the father of the SOAP note and of the problem list.

Having read his book, I’d say he should also be known as the father of orderly patient-centered care, and I’d encourage all those interested in patient empowerment and personalized care to learn more about his ideas. (Digital health enthusiasts, this means you too.)

Skeptical of this paternity claim? Consider this:

“The patient must have a copy of his own record. He must be involved with organizing and recording the variables so that the course of his own data on disease and treatment will slowly reveal to him what the best care for him should be.”

“Our job is to give the patient the tools and responsibility to organize the knowledge and slowly learn to integrate it. This can be done with modern guidance tools.”

These quotes of Dr. Weed’s were published in 1975, in a book titled “Your Health Care and How to Manage It.” The introduction to this older book is conveniently included as an appendix within “Medicine in Denial.” I highlighted it this section intensely, astounded at how forward-thinking and pragmatically patient-centered Dr. Weed’s ideas were back in 1975.

Thirty-eight years ago, Dr. Weed was encouraging patients to self-track and to participate in identifying the best course of medical management for themselves. Plus he thought they should have access to their records.

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The Problem-Oriented Medical Record

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By Leslie Kernisan, MD

[This post is Part 2 of a commentary on “Medicine in Denial,”(2011) by Dr. Lawrence Weed and Lincoln Weed. You can read Part 1 here.]

An excellent chapter in “Medicine in Denial” discusses the problem-oriented medical record (POMR), a comprehensive charting approach that Dr. Larry Weed began developing in the late 1950s.

The Weeds begin by detailing what a good health care record should allow clinicians, and the healthcare system to do. In other words, they start by clearly defining the needs of patients, the purpose of the medical record, and the kind of health care it should support.

Specifically, the Weeds make the following points:

  • Managing chronic illness often involves multiple interventions that require adjustment over time, rather than a single treatment that results in cure/resolution. This requires tracking of physiologic variables and medical interventions over time.
  • Chronic care of medically complex patients, especially those with multimorbidity, requires coordination of care among multiple clinicians at multiple sites over time.
  • For the many people suffering from multi-morbidity, chronic medical problems and their associated interventions often interact. This makes it particularly important that care be individualized, and carefully tracked over time.
  • Enabling patient awareness, participation, and commitment is essential, with the Weeds noting that “unavoidable complexity must somehow be made manageable by patients who need to cope with what is happening to their own bodies and minds.”
  • Patient care – and hence the charting of medical data — must be oriented towards a single purpose: individualized medical problem solving for unique patients.

In other words, the Weeds consider the longitudinal, comprehensive, person-centered, individualized, collaborative care of the medically complex patient to be a fundamental base scenario around which we should design healthcare, and healthcare information systems.

Continue reading…

Medicine in Denial

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By Leslie Kernisan, MD

“Any system of care that depends on the personal knowledge and analytic capabilities of physicians cannot be trusted.”

Finally, I’ve come across a really spot-on analysis of what ails healthcare, and some proposals that have serious potential to improve healthcare for people like my patients. Come to think of it, implementing these proposals would surely improve care for all patients.

The analysis, and the proposed fixes, are detailed by Dr. Lawrence Weed and his son Lincoln Weed, in their book “Medicine in Denial.” (The quote above is from this book.)

The book is a little long, but for those who are interested in leveraging technology to make healthcare more consistent and more patient-centered, I’d say it’s a must-read and must-discuss. (I’m a bit surprised that this book doesn’t seem to have many reviews, and that Dr. Weed’s ideas are not more often cited by those advocating for digital health and patient empowerment.) In particular, the Weeds’ book provides:

  1. An excellent description and analysis of two huge fundamental problems in healthcare. One is the way we persist in relying on fallible physician minds to manage the process of evaluating, diagnosing, and managing medical problems. The other is our lack of standards for consistently documenting and organizing information related to our evaluation and management of patients. Both lead to idiosyncratic, disorganized healthcare that generally serves patients poorly, especially those who are medically complex or have multiple chronic conditions.
  2. A proposed method of using computers and technology to consistently connect patient data to medical knowledge, leading to better diagnosis and medical management.

    3. Continue reading…

An Indecent Proposal That Just Might Solve the Primary Care Crisis: Meet the 35 Hour Work Week

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By Leslie Kernisan, MD

A few weeks ago, The Health Care Blog published a truly outstanding commentary by Jeff Goldsmith, on why practice redesign isn’t going to solve the primary care shortage. In the post, Goldsmith explains why a proposed model of high-volume primary care practice — having docs see even more patients per day, and grouping them in pods — is unlikely to be accepted by either tomorrow’s doctors or tomorrow’s boomer patients. He points out that we are replacing a generation of workaholic boomer PCPs with “Gen Y physicians with a revealed preference for 35-hour work weeks.” (Guilty as charged.) Goldsmith ends by predicting a “horrendous shortfall” of front-line clinicians in the next decade.

Now, not everyone believes that a shortfall of PCPs is a serious problem.

However, if you believe, as I do, that the most pressing health services problems to solve pertain to Medicare, then a shortfall of PCPs is a very serious problem indeed.

So serious that maybe it’s time to consider the unthinkable: encouraging clinicians to become Medicare PCPs by aligning the job with a 35 hour work week.

I can already hear all clinicians and readers older than myself harrumphing, but bear with me and let’s see if I can make a persuasive case for this.

Continue reading…