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The PCORI Patient Engagement Awards: A Call for Proposals

By Anne C. Beal, MD, Susan Sheridan & Suzanne Schrandt

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?

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By James Salwitz, MD

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.

By Berenson, Pronovost & Krumholz

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

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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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Is Patient Engagement the Solution…or a Healthcare Urban Legend?

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By AL LEWIS

The following statistic from the Centers for Disease Control and Prevention (CDC) never fails to shock: the 133-million adults – or “nearly 1 in 2” — with chronic disease account for 75% of spending.   Engaging those high utilizers, the story continues, will help bring healthcare spending under control.

This storyline is a classic healthcare urban legend.  Essentially nothing in that paragraph makes sense as a matter of policy, or even arithmetic.

Yes, the CDC got their arithmetic wrong.  133-million Americans comprise about 60% of adults, not “nearly 1 in 2.”   Second, their definition of “chronic disease” specifically includes stroke, which is a medical event, not a chronic disease, and cancer, many of which would not fit that definition either.    (Sloppy editing and arithmetic is a CDC trademark.  They also observe that ”almost 1 in 5 youth…has a BMI in or above the 95th percentile” on their growth chart, which of course is mathematically impossible as written.)

Third, speaking of definitions, how are they defining “chronic disease” so broadly that 60% of us have at least one?   Are they counting tooth decay?  Dandruff?  Ring around the collar?

Corrected or Not, The Statistic Itself Makes No Sense

The statistic is intended to demonstrate that a concentration of costs among people with out-of-control chronic disease but actually shows the opposite.  It shows a diffusion of costs, not a concentration.   60% of adults accounting for 75% of spending – or even the incorrect 50% of adults accounting for 75% of spending — is about as far from a 20-80 rule as one can get.    Basically costs are not concentrated in ongoing day-to-day chronic disease.

Second, that 75% covers all expenses of that 60%, not just being out of control and needing to go to the hospital, which seems to be the underlying assumption behind the flurry of activity designed to engage these people and control their conditions.  Quite the contrary: in many conditions (rare diseases, high blood pressure and asthma come to mind) preventive drugs already overwhelm medical events as a expense category.  In a typical commercial or even TANF Medicaid population, only about 10% of hospitalizations are for the five “common chronics” of asthma, diabetes (and its complications), CAD, COPD and heart failure.    (In Medicare this percentage and absolute number are much higher – that is indeed a population where control of chronic disease matters.)

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Why Patient Engagement Really Does Matter and Why So Many People Are Getting It Wrong

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By Rob Lamberts, MD

“Patient engagement.”

What is “Patient Engagement?” It sounds like a season of “The Bachelor” where a doctor dates hot patients. It wouldn’t surprise me if it was. After all, patient engagement is hot; it’s the new buzz phrase for health wonks. There was a even an entire day at the recent HIMSS conference dedicated to “Patient engagement.” I think the next season of “The Bachelor” should feature a wonk at HIMSS looking for a wonkettes to love.

Here’s how the Internets define “Patient engagement”:

The Get Well Network (with a smiley face) calls it: “A national health priority and a core strategy for performance improvement.”
Leonard Kish refers to it as “The Blockbuster Drug of the Century” (it narrowly beat out Viagra) – HT to Dave Chase.
Steve Wilkins refers to it as “The Holy Grail of Health Care” (it also narrowly beat out Viagra) – HT to Kevin MD.
On the HIMSS Patient Engagement Day, the following topics were discussed:

-How to make Patients Your Partners in Satisfying Meaningful Use Stage 2 Objectives; Case Studies in Patient Engagement, session #64;
-Review Business Cases for Implementing a Patient-Centered Communication Strategy and Building Patient 2.0, session #84;: and
-Engaging People in Health Through Consumer-Facing Devices and Tools, session #102.

So then, “patient engagement” is:

-a strategy
-a drug
-a grail (although I already have a grail)
-a “meaningful use” objective
-something that requires a business case
-something that requires “consumer-facing devices and tools” (I already have one of those too).

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When Technology Understands What People Want From Healthcare, Our System Has A Chance

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By Jordan Shlain, MD

As a primary care doctor in San Francisco and Silicon Valley, I have been searching for the holy grail of patient engagement for over 15 years. My journey began with an alpha-numeric pager and a medical degree. I shared my pager number with my patients along with a pledge to call them back within 15-minutes, 24-hours a day. My communications evolved into email and texting, with the predicate that by enhancing communication, I could carefully guide my patients down the byzantine corridors of healthcare – with a high probability we could avoid mistakes – if they would agree to share the ownership of their treatment plan. My life’s work has been where the rubber meets the road; where doctors interface with patients: office, hospital or smartphone.

Technology has washed over almost every industry and transformed it, radically. Healthcare is on the precipice of destiny. The wave is here.

Over the past three decades healthcare has lurched from one existential crisis to another; often manifested by an acronym solution: HMO, ACO, PCMH, P4P, PQRS; each a valiant attempt to reign in costs and solve for aligning incentives. However, we can’t have hospitals, doctors, health systems and payers accountable to healthy outcomes if the 300,000,000 people are not paramount to the equation.
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The Patient-Centered Practice, Revisited

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By Michael L.  Millenson

It is as natural for doctors, hospitals, health plans and others to aggressively affirm their “patient-centeredness” as it is for politicians to loudly proclaim their fealty to the hard-working American middle class. Like the politicians, the health care professionals no doubt believe every word they say.
The most accurate measure of “patient-centered” care, however, lies not in intentions but implementation. Ask one simple question ­– what effect does this policy have on patients’ ability to control their own lives? ­­­– and you start to separate the revolutionary from the repackaged. “A reform is a correction of abuses,” the 19th-century British Parliament member Edward Bulwer-Lytton noted. “A revolution is a transfer of power.”

With that in mind, which purportedly patient-centric policy proposals portend a true power shift, and which are flying a false flag?

Falling Short Of Shifting Power

The two most prominent examples of initiatives whose names suggest power sharing but whose reality is quite different are so-called “consumer-driven health plans” (CDHP) and the “patient-centered medical home” (PCMH). Both may be worthy policies on their merits, but their names are public relations spin designed to put a more attractive public face on “defined contribution health insurance” and “increased primary-care reimbursement.

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Engaged Patients Translate to Better Outcomes and Costs

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By JUDITH HIBBARD and JESSICA GREENE

The expansion of health insurance coverage may be the most visible aspect of health reform, but other elements will ultimately have a significant impact on how we all experience health care. One pivotal change is how health care organizations are paid. New payment approaches will reward providers based on whether services actually improve patients’ health and keep costs down versus simply incentivizing them to provide more care.

One of the more consequential changes will be a greater focus on helping patients to be more involved in their care. There is ample evidence that the behaviors people engage in and the health care choices they make have a very clear effect on both health and costs, positively and negatively. The most innovative health care delivery systems recognize this and see their patients as assets who can help them achieve the goals of better health at lower costs. From this point of view, “investing” in patients and helping them to be more effective partners in care makes good sense.

Our study, reported in the February issue of Health Affairs, highlights this role that patients play in determining health-related outcomes. We found that patients who were more knowledgeable, skilled and confident about managing their day-to-day health and health care (also known as “patient activation,” measured by the Patient Activation Measure) had health care costs that were 8 percent lower in the base year and 21 percent lower in the next year compared to patients who lacked this type of confidence and skill. These savings held true even after adjusting for patient differences, such as demographic factors and the severity of illnesses.

Even among patients with the same chronic illness, those who were more “activated” had lower overall health care costs than patients who were less so. Among asthma patients, the least activated patients had costs that were 21 percent higher than the most activated patients. With high blood pressure, the cost differential was 14 percent.

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Patient Satisfaction: The New Rules of Engagement

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By Holly Korda, Ph.D.

Patient satisfaction has garnered new attention as an indicator of provider performance and an important dimension of value-based health care under the Affordable Care Act (ACA). Defined in any number of ways, it is often publicly reported to help patients choose among health care providers.

This month, patient satisfaction takes on even greater importance as ACA provisions set to begin October 1, 2012, tie patient satisfaction to Medicare reimbursement, as measured by the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey. HCAHPS scores reflect patients’ perspectives on several aspects of care: communication with doctors and nurses, responsiveness of hospital staff, pain management, communication about medicines, discharge information, cleanliness of the hospital environment, and quietness of the hospital environment—and are estimated to place at risk an average of $500,000 to $850,000 annually per hospital.(1)There’s a lot riding on patients’ perceptions of the health care experience, our satisfaction with the care we receive. But what do we really know about patient satisfaction, its relationship to patient outcomes and cost—and just what is it we are rewarding?Continue reading…