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Patient Engagement: On Metrics and Meaning

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.

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Creating Conditions for Humanity in Hospitals

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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Nurses Will Play a Vital Role in the Enactment of the Affordable Care Act

While in the care of a nurse, patients have a champion: a health care professional working to assure timely tests, procedures, and rehabilitative activities that foster better and faster recovery.  Prior to discharge from a health facility, it is often the nurse who assesses a patient’s self-care ability (or access to home caregivers) to provide the type of treatments and medications needed to prevent relapse or even costly return to a hospital.

Responsibility for optimal recovery is of course shared by all health team members, but the unique position of nurses at the patient’s bedside (literally and metaphorically) gives us many avenues to influence care and cure.

Though nurses already play a central role in cost containment, care quality, and patient safety, current trends in nursing education have us poised for even greater contributions. That’s because good baccalaureate and graduate programs in nursing increasingly incorporate quality improvement in care settings. Through attention to ‘microsystem’ processes, we work toward better outcomes not only for individuals but also for health systems as a whole. Nursing prepares leaders, administrators, and researchers who can improve care processes and related analytics around outcomes and cost.

The coming enactment of reforms included in the Affordable Care Act will increase the opportunities for nurses to make both individuals and care systems as healthy as they can possibly be. Patient communication, preventive care, and navigation across the vast medical landscape are well-established foci in the curriculum at major U.S. nursing schools. These areas of expertise could not be more essential now that new insurance options and Medicaid expansion are bringing millions of individuals into a national primary care system already taxed by provider shortages.

Nurse navigators and transitional care nurses are stepping up to central coordinating roles within Accountable Care Organizations—the model wherein participating health care providers are collectively responsible for their enrollees’ care, and also can share savings resulting from efficiency and improvements in that care.

Nursing as a profession actively engages in leading efforts to improve patient care and reduce costs; this is integral to our professional values, knowledge base, and skills. We have earned the trust of Americans (we’re voted most ethical and honest in Gallup polls), and will use that trust, along with our health promotion expertise, to communicate with patients about the best prevention, timely care, and most efficient ways to get needed help as they navigate together through America’s evolving system of care.

Kathleen Potempa, PhD, RN, FAAN, is the Dean of the University of Michigan School of Nursing and a national leader in health promotion, nursing education, and research. Dr. Potempa is the immediate past president of the American Associate of Colleges of Nursing and recently concluded a four-year term on the NIH’s National Institute of Nursing Research Council.

Why a New Healthcare Technology Designed to Cut Costs and Increase Efficiency Probably Won’t Put Anesthesiologists Out of Work

The Wall Street Journal recently contacted me regarding an upcoming article on Sedasys, the new gadget that is supposed to be able to infuse propofol by computer while monitoring vital signs.

If you’ve read anything I’ve written previously, you’ll know that I am NOT a big proponent of technology as a means of “improving” patient care. To me, the more technology you put between the patient and the caregiver, the less medicine you’re practicing, and the more data-entry and computer programming you’re doing.

Sedasys is designed specifically to administer propofol.  Propofol is a milk-like substance that produces a range of effects from sedation to general anesthesia.  For sedation you just use less,  for general anesthesia you use more.  Its very quick onset and very quick recovery make it great for outpatient sedation.  It has to be given in a continuous drip because its effect goes away so fast.  GI docs love it because its so effective.  I suspect they also love it because propofol comes with an anesthesiologist to give it.

The only problem is the one Michael Jackson encountered: it has this pesky side effect of causing you to stop breathing.  And you can’t tell by looking at a person how much will sedate them and how much will make them stop breathing.

A little old lady with a million health problems might sedate at, say, 40 mg and stop breathing at 60 mg, while an 19-year-old could probably take 150 mg and still be fighting you.  It’s not necessarily weight-based.

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Providers Are Held Accountable. Why Aren’t Technology Vendors?

As healthcare shifts from fee-for-service to fee-for-value, hospitals and physicians are increasingly being held accountable for outcomes by the government, payers and patients. Historically, provider organizations only had to meet performance criteria to earn a pay-for-performance bonuses or hospital certification, but with the arrival of Accountable Care Organizations (ACO), Meaningful Use and other programs, payment is now based on to quality of care rather than quantity of services.

Health information technology (HIT) systems are able to track physician actions and measure outcomes down to the individual patient level and allow organizations to closely monitor the quality levels of a given physician. These same tools should be able to monitor the performance of the vendors who are there to support these clinicians. With patient engagement solutions, for example, vendors claim they can help improve HCAHPS scores, treatment adherence, patient outcomes, and reduce costs, but have no evidence to back it up.

Vendors should be willing to commit to their patient engagement promises, present proof showing improved outcomes and face some financial risk for failing to deliver.

Global accountability

Since patient engagement was included in the Centers for Medicare and Medicaid Solutions’ Meaningful Use of Electronic Health Records program, it has become a popular buzzword. Every HIT vendor claims to offer tools to assist providers with this important clinical quality issue, but no one is holding anyone accountable.

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The Affordable Care Act Will Fail Without Patient Engagement

What’s behind the recent EHR public relations blitz and our passionate debate in The Health Care Blog? It’s fear for the Affordable Care Act’s future. Oh, the ACA can weather political challenge in the short term, but in the long run, only health cost containment will matter. EHRs are the ship that institutions are counting on to navigate payment reform and, from the institutional perspective, physicians and patients are just along for the ride. From the citizen perspective however, cost containment will be seen as rationing unless patients and physicians are appropriately engaged in the most costly decisions.

The impact of yet more regulations, such as Stage 3 Meaningful Use, could be too late to save the ACA. For now, the administration and those of us that hope the ACA succeeds must work to shift EHR vendors and their institutional customers toward patient engagement using the tools of policy guidance, public relations and federal procurement.

First, a crash course in health economics. If you have a few minutes, read Accountable Care Organizations: Can We Have Our Cake and Eat It Too? by Jessica L. Mantel. Otherwise, just struggle through the next two paragraphs summarizing why EHRs are the lynchpin of health reform via the ACA.

Cost containment requires either cost controls or a shift away from fee-for-service payment. The ACA is based on accountable care as an alternative to fee-for-service. Accountable Care Organization (ACO) is shorthand for the new health care payments regime. By paying ACO institutions instead of individual service providers, health insurance companies and Medicare provide direct economic incentives to reduce waste, lower costs and, if we’re not careful, withhold needed care. An ACO is by definition an organization or institutional construct.

The EHR is is not the Jedi knight’s lightsaber, it is an institutional tool designed to bind the individual service providers into the Federation’s collective. Not surprisingly, patient engagement is an afterthought.

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The PCORI Patient Engagement Awards: A Call for Proposals

One of our core beliefs at PCORI is that patients, clinicians, and other front-line caregivers, and others across the healthcare community have the potential to become valued and real partners in the patient-centered outcomes research (PCOR) we support. We practice what we preach in the requirements we place on applicants for our funding and the way we evaluate their proposals.

So we’re pleased today to announce the latest example of how we’re making that principle real – a new funding program called the PCORI Engagement Awards and the first funding opportunity under this program, the Pipeline to Proposals Award.

Listening to our stakeholders

We got the idea for the Engagement Awards program last October, during our first patient engagement workshop. We asked workshop participants to provide input into how we can better serve and connect with patients and the communities interested in being involved with rigorous PCOR– which is, comparative clinical effectiveness research focused on and guided by the needs and concerns of patients. The response was a clear and broad expression of passion, expertise, and willingness within the patient and broader healthcare community to help us pursue this approach to research. The question was how best to do it.

engagement-awards-graphic

From that discussion was born our Engagement Awards program, which is designed to leverage the community’s passion and expertise by offering targeted funding to dozens of groups of patients, providers and other healthcare community stakeholders interested in supporting the expansion of high-quality, useful PCOR and the implementation of its results.

Our philosophy is that, when the research process incorporates the perspectives of the entire healthcare system and focuses on the questions important to patients and those who care for them, the results are far more likely to be meaningfully incorporated into clinical decision-making and practice.

The Engagement Awards program will have three distinct categories:

  • Knowledge Awards, which will fund activities such as background papers, landscape reviews, and development of mechanisms to share research results.
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Why Is the Doctor Angry?

I had a patient this week that really screwed up his medical care when he experienced a predicted side effect of curative chemotherapy.  Despite clear instructions and access to every number my partners, my staff and I have, including office, triage, cell, and answering service, he did not reach out.  Day-by-day he lay in bed, as he grew weaker and multiple systems failed.  No one contacted me.  Finally, he sent an email to a doctor 3000 miles away, in California.  That doc forwarded the email to me.  I sent the patient to the hospital.

Did we rush to the emergency room, to salvage his life?  Of course.  Were there innumerable tests, complex treatments, multiple consults and an ICU admission?  You bet.  Did I patiently explain to him what was happening?  Yes.  Did I look him in the eye and tell him that I was upset, that he had neglected his own care by not reaching out and in doing so he violated the basic tenants of a relationship which said that he was the patient and I was the doctor?  Did I remind him what I expect from him and what he can expect from me?  You better believe it, I was really pissed!

The practice of medicine for most doctors is fueled by a passion to help our fellowman.  This is not a vague, misty, group hug sort of passion.  This is a tear-down-the-walls and go-to-war passion.  We do not do this for money, fame, power or babes; we do this because we care.  Without an overwhelming desire to treat, cure and alleviate suffering, it would not be possible to walk into an oncology practice each morning.  Therefore, just as we expect a lot of ourselves, we darn well expect a lot out of our patients.

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4. Measure patient experience with care and patient-reported outcomes as ends in themselves.

Performance measurement has too often been plagued by inordinate focus on technical aspects of clinical care—ordering a particular test or prescribing from a class of medication—such that the patient’s perspective of the care received may be totally ignored. Moreover, many patients, even with successful treatment, too often feel disrespected. Patients care not only about the outcomes of care but also and their personal experience with care.

There is marked heterogeneity in the patient experience, and the quality of attention to patients’ needs and values can influence their course, whether or not short-term clinical outcomes are affected. Some patients have rapid recovery of function and strength, and minimal or no symptoms. Other patients may be markedly impaired, living with decreased function, substantial pain, and other symptoms, and with markedly diminished quality of life. It would be remiss to assume that these two groups of patients have similar outcomes just because they have avoided adverse clinical outcomes such as death or readmission.

In recommending a focus on measuring outcomes rather than care processes, we consider surveys or other approaches to obtaining the perspectives of patients on the care they receive to be an essential component of such outcomes. When designed and administered appropriately, patient experience surveys provide robust measures of quality, and can capture patient evaluation of care-focused communication with nurses and physicians [24]. And while patient-reported measures appear to be correlated with better outcomes, we believe they are worth collecting and working to improve in their own right, whether or not better experiences are associated with improved clinical outcomes [25].

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

[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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