Archive for February, 2012

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What’s Engagement Now? Experts Discuss Emerging Challenges

Patricia Barrett
Wednesday, February 29th, 2012

This interview with Patricia Barrett is the fourth in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts—among them our CFAH Board of Trustees—who have devoted their careers to helping people find good health care and make the most of it.

Patricia Barrett, MHSA, joined NCQA in 2008 as the Vice President for Product Development. In this role, she is responsible for exploring new product concepts and evolving existing products to meet the needs of a changing health care environment. Prior to joining NCQA, Ms. Barrett was the lead consultant for General Motors on managed care. Ms. Barrett attended the University of Michigan receiving a Bachelors degree in Sociology and a Masters Degree in Health Services Administration from the School of Public Health.

Embedding Engagement into Quality Measurement

 

Gruman:  I’m interested in learning about how the National Committee for Quality Assurance contributes to individuals’ abilities to engage knowledgeably in their health care.  I know NCQA is generally in the business of setting standards for the quality of health care and then measuring the performance of various players – health plans, clinical practices and physicians, for example – against those standards.

Patricia Barrett: Yes, one main part of our work involves figuring out what constitutes high quality health care and developing measures that will accurately reflect the extent to which the care in a given setting meets that standard.

The other main part of our work involves using those measures to assess health plans, disease management and behavioral health companies, individual clinicians and practices.

Gruman: And you report the results of your assessments publicly, right?

Patricia Barrett: We do. Information is available on the NCQA Website and we use a number of different strategies to get it directly in the hands of those who can use it, including those clinicians and institutions that were assessed. For example, our public health plan report card tells people how the plan performs in key areas such as keeping people healthy and helping people live well with chronic illness. Health plans and purchasers license the data on clinicians and practices that perform well so they can be identified in provider directories.

We know that those who are being rated “teach to the test,” that is, they work to improve their ratings if they know that the public and their peers can see how well or poorly they are doing. We also know that in working to improve ratings on specific measures they put systems and processes in place that improve quality overall.

Gruman: It looks like NCQA has real leverage to increase people’s abilities to participate positively in their health care.

Patricia Barrett:  We do, using two approaches:

One way we look at patient engagement is in the choice arena, by helping people pick who they’ll get their care from. We provide information for people and purchasers to use to make choices about individual clinicians, practices and health plans, for example, based on objective ratings. Our seal of approval and report cards help companies choose the best health plans for their employees and help people find a doctor to help them manage their diabetes or one that can serve as their primary care practice. The idea is that if people know that a nurse practitioner or doctor or practice has been recognized by NCQA as providing high quality diabetes care, for example, it will help them to pick a clinician or practice that meets their needs. We rank health plans every year and license the results to major publishers so it reaches millions of consumers.

Gruman: And the second approach to leveraging attention to supporting patient engagement…?

Patricia Barrett: Is by defining as “high quality” the provision of care that facilitates and supports people’s engagement in their own health care.  When we are deciding what goes into an evaluation like this, we try to include things that will help make sure that people get the opportunity to be more engaged in their care. Care management, self-management support, patient experience measurement…these are all embedded in many of our recognition, accreditation and certification programs.

Gruman: How does the public learn about these recognition and accreditation programs?

Patricia Barrett:  Many clinicians and organizations use them as part of their credentials; you can often find them noted on their websites, for example.  They are also used by health plans – you know, published in health plan directories and of course they are listed on NCQA’s site.  Health plans may give extra payment to doctors who are recognized.

Gruman: Are there other recognition programs?

Patricia Barrett: Yes.  We have programs to assess the systems in place in outpatient practices to assure high quality care. There is a program for Patient-Centered Medical Homes (primary care practices) and one for specialist practices. We look at how the practice is organized and its attentiveness to access, population health, care management, tailoring to needs of patients, consideration of what community resources need to be brought to bear and quality improvement work.  Practice recognition is not about quantifiable performance measures and whether they hit percentages (unlike the programs for individual clinicians). For this program, we also look at how the practice is using health information technology, for example, how widely and often are they using their electronic health record system capability.

Within Patient-Centered Medical Homes, the practices are required to seek out the patient voice, heed it and include it in their efforts to provide better care. We specifically encourage patient involvement by expecting that those practices will include patients and families in their quality improvement work. They have to gather patient experience data using a patient survey like the standard Consumer Assessment of Healthcare Providers Survey (CAHPS) or something else like the CAHPS survey developed for medical homes.  The practice has to involve patients and families in the qualitative assessment of clinicians and in what they will do to improve.  Patients are also expected to be represented on committees and boards.

Our concern about patient engagement is really fundamental.  We think it should be embedded within care management, case management, health plans, disease management, medical homes or ACOs – no matter who is doing it, they should be making sure care is tailored to the needs, preferences and expectations of patients and caregivers.

Gruman: That’s a pretty demanding list of concerns. How do you actually measure this?

Patricia Barrett: NCQA expects that those entities are getting from the patient or caregiver information about their cultural and linguistic needs and their preferences and goals for care and then tailoring support programs specifically to address those goals.  These are qualitative attributes. The measure is whether there is credible evidence in the chart when the assessors go look at records; whether the patient was asked about these things; whether the patient was involved in the care plan development.

Our current thinking is that it’s difficult to really understand the qualitative value of the conversations between clinician and patient, but you can at least see that there is a process in place to encourage practices to elicit and document patient preferences.

We want to measure a collaborative process, not outcomes. It’s a trick to measure the right things that get at whether a good conversation is taking place and not create an unintended consequence to push individuals to a particular decision where that might not be a rational, appropriate decision for that person.

But the idea is that if this is done well, you will end up with better health outcomes and better performance on quality outcomes. But this is only true if you know what good care looks like and that it’s not preference sensitive.

Gruman: What do you mean by “preference sensitive” in this context?

Patricia Barrett:  Our aim is to have measures that, no matter what a patient’s preferences are, there is a right answer for most patients and the exceptions are seldom enough that it won’t adversely affect the overall practice of a doctor or plan.  We need to get better at acknowledging those exceptions.

What’s Engagement Now? Experts Discuss Emerging Challenges series:

Interviews with CFAH’s Ziff Fellows on the challenges of patient engagement:

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Guest Blog: Costs of Care…and Coercion?

John Schumann
Tuesday, February 28th, 2012

Costs of Care (Twitter: @CostsOfCare), where this post was originally published, is a Boston-based nonprofit organization that helps caregivers deflate medical bills and provide high value care. As part of the 2011 Costs of Care Essay Contest, more than 100 anecdotes were shared by patients and providers around the country that illustrate the role of cost-awareness in medicine.

The following anecdote is written by Dr. John Schumann, Associate Professor of Medicine at the University of Oklahoma. His story was a finalist in the 2011 Costs of Care Contest, and will be featured on American Public Media’s Marketplace. This post first appeared on Cost of Care’s blog on February 27, 2012.

[All names and identifying features of characters in this story have been changed.]

Nora, a third year medical student, came to me in moral distress. Ms. DiFazio, one of the hospitalized patients on her Internal Medicine rotation, was frightened to undergo an invasive (and expensive) medical procedure: cardiac catheterization. The first year doctor [‘intern’] with whom Nora was paired, Dr. White, vented to her:“These patients come to us seeking our help and then refuse what we have to offer them,” Dr. White steamed.

At the bedside, the intern demanded to know why Ms. DiFazio refused the procedure. When no reason beyond “I don’t want to” was offered, Dr. White told Ms. DiFazio that there was no longer cause for her to stay in the hospital.

By declining the procedure, Dr. White informed Ms. DiFazio that she would have to sign out ‘against medical advice’ (AMA). To signify this she would have to acknowledge that leaving AMA could result in serious harm or death. In addition, Ms. DiFazio would bear responsibility for any and all hospital charges incurred and not reimbursed by her insurance due to such a decision.

“The threat of a huge hospital bill got Ms. DiFazio to stay and take the test,” Nora related. “It just seems so wrong to bludgeon a patient this way. Can it possibly be true?”

I’d been out of medical school myself for eight years at that point; until then I’d never heard that patients who sign out against medical advice risk bearing the costs of their hospitalization. What about a patient’s freedom of choice, or as we like to call it in medicine, their autonomy? I told Nora I didn’t know, but was determined to find out. Ethically, the notion that patients in the hospital must do our bidding or pay the price seemed dubious. Yet in a world of co-pays, deductibles, and ‘preexisting conditions,’ a mere grain of plausibility made this idea seem vaguely credible.

I asked around. To my surprise, many fellow attending physicians told me they had been taught the very same thing. My colleagues had trained at teaching institutions around the country, so I began to see this as a pervasive and widely-held belief. I straw polled some of our residents, and like Dr. White, found that they almost unanimously believed that AMA discharges incurred financial penalties. Where did they learn this?

From their attendings.

From the nurses.

From the AMA form itself, with language stating that the patient, by signing, acknowledges financial risk.

We needed to find the truth.

Colleagues helped us sift through nearly ten years of AMA discharges from our teaching hospital. And though the results are in press at a medical journal, I can say that out of hundreds of cases of AMA discharges over a decade, in only a handful was the bill was not paid—and that was invariably due to ‘administrative issues,’ not because of the AMA discharge.

I also thought it important to go to the source: I called the insurance companies themselves. I talked with VPs and media relations people from several of the nation’s largest private insurance carriers. Each of them told me that the idea of a patient leaving AMA and having to foot their bill is bunk: nothing more than a medical urban legend.

They were glad to tell me so, as this was a rare occasion of insurance companies looking magnanimous. One director went so far as to poll his company’s own medical directors—a half dozen of them–and found that several of them had been taught and believed the canard about AMA discharge and financial responsibility. He was happy to set the record straight.

So patients and doctors beware: The next time you or your loved one has decided that it’s time to leave the hospital, don’t let us doctors coerce you into staying by threatening you with the bill.

It simply isn’t true that leaving against medical advice makes it fall entirely upon your pocketbook.

Future Noras should feel empowered to set the record straight with their interns and residents. Most of all, the Ms. DiFazios of the world won’t have to submit to procedures that they don’t wish to undergo.

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The Clinician’s Role in Patient Engagement

Inside Health Care
Monday, February 27th, 2012

Inside Health Care posts feature recent news and blog posts from the health care community and are part of the Center for Advancing Health’s portfolio of free, evidence-based coverage of what it takes to find good care and make the most of it.  By Monica Kriete, CFAH Communications Associate.

Patient engagement initiatives often focus on how patients can or should change their behavior. Certainly, more of the responsibility for finding good care and making the most of it falls on patients and their caregivers.  But recently, several health care insiders noted the importance of providers’ behavior in promoting and/or preventing patient engagement.

At Mind the Gap, Stephen Wilkins asks, “Patient engagement versus physician engagement – which comes first?“  He points out that “Research shows that on average, physicians interrupt [patients'] opening statements within 18 seconds.” He adds, “How do you feel when a friend, a colleague, or your spouse interrupts you when you are trying to make a point?”  Stephen suggests that a clinician who is unwilling to consider the patient’s values and desires, for example, about using medication as a first course of treatment, can effectively block patients’ attempts to become engaged.

Patient safety expert Dr. Peter Pronovost also emphasizes the importance of listening to patients at The Doctor Weighs In.  In What I learned from listening to a patient he writes, “Health care needs to recognize that patients or their parents or spouses have the tacit wisdom, from years of experience, to understand the ins and outs of a particular scenario, and that this type of wisdom can complement the physician’s wisdom.  Sometimes it is even more important.”  Listening to patients and their loved ones, as well as to less senior clinicians, is a key component of creating a culture that values patients’ care and safety over individual doctors’ authority, he explains.

Health Beat’s Anne Polta echoes Peter’s sentiments in her blog When the Patient Complains.  “When patients complain,” she writes, “it’s often a reliable sign that a health care organization is falling short in some area.”  Changing attitudes about patient satisfaction now lead some care providers and administrators to view these complaints not as mere criticism, but as an opportunity to receive feedback and improve patients’ care.

 

Related Links:

 

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The Unanticipated Price of Successful Cancer Treatment: Appropriate Health Care for Survivors

Jessie Gruman
Wednesday, February 22nd, 2012

Jessie C. Gruman, PhD is president and founder of the non-profit organization Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life threatening illnesses — informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter at @JessieGruman. More…

Book review: Health Services for Cancer Survivors: Practice, Policy and Research

The day I completed treatment for Hodgkin Disease in 1974, my oncologist shook my hand, wished me luck and said good-bye.

“But how will I know if the cancer comes back?” I asked.

“Oh, you’ll know. You won’t feel well.”

And that was it. I was on my own.

He was wrong about not feeling well. Since then I have received three additional cancer-related diagnoses: two discovered as part of regular screening and one through the vigilance of a physician.  Each time I felt fine until the moment I got the news. But he was also wrong to say good-bye without any mention of ongoing follow-up or even a reminder to check in with my primary care doctor.

Much has been learned since 1974.  Research has produced useful evidence about the long-term implications and impact of the diagnosis and treatment on cancer survivors. That research, combined with the growing survivors population (currently 12 million), forms the basis of the argument that people who have been treated for cancer are at considerable risk for recurrence, new cancers, late effects of treatment and related declines in physical and psychosocial functioning. Many of these can be prevented, treated and managed should appropriate health care services become available.[i]

This argument has been made – and evidence arrayed to support it — in a number of reports by the Institute of Medicine, the most prominent of which is From Cancer Patient to Cancer Survivor: Lost in Transition.  The recent book Health Services for Cancer Survivors: Practice, Policy and Research[ii] revisits the IOM report’s basic argument and updates it by providing a detailed snapshot of the state of the science and art of providing such care.

This book is a collection of well-sourced individual chapters that are both comprehensive and thoughtful. Reading straight through (a strategy not recommended for any edited collection!) sparked these observations:

People who have been treated for cancer need special health care services for the balance of their lives. The reason my original oncologist didn’t talk about risks for recurrence or long-term effects of treatment was because very little was known about them. In 1974 I was part of a clinical trial that today produces a stream of evidence that influences treatment protocols and uncovers new risks and late effects of treatment as trial participants age. Registries and trials generate similar volumes of information about risk and late effects for many cancers.

This growing body of information – when represented as guidelines and standards — constitutes the evidence base for special health care services for cancer survivors.

Implementing health care services for cancer survivors appears to be hellishly complicated. Such care requires an approach that is novel for many primary care and specialty clinicians (i.e., planned, proactive monitoring and treatment over time vs. reacting to disease and symptoms).  It requires expertise in a broad range of issues: managing symptoms, regular checking for effects on multiple organ systems and addressing physical rehabilitation and psychosocial functioning. And of course, we survivors differ wildly in the complexity of our needs, which may ebb and flow throughout our lives.

What do clinicians need to be able to deliver care to the diverse and growing group of people who have been treated for cancer: Training? Time? Additional staff? Guidelines? Reimbursement? Quality measures? Administrative support? All these and more.  At a time when health care services are increasingly constrained, the models of survivorship care presented in this book are generous…aspirational, perhaps?

The question of who will provide care to cancer survivors remains open. Clinicians must believe that special care for cancer survivors is important and learn how to provide it. The debate about whether primary care clinicians or oncologists are better suited or more willing to provide such care is described in multiple chapters. To re-cap: surveys have found that many primary care clinicians have doubts about their ability to provide this kind of care. Those doubts are shared by many oncologists, a good number of whom are not interested in providing care to survivors. Beyond this, however, the predicted shortage of both primary care clinicians and oncologists, documented in the book’s chapter on building the workforce  to provide this care, raises doubts about the availability of clinicians to care for the majority of cancer survivors in the future.

The development of a treatment summary and survivorship care plan for each individual at the end of treatment is necessary to guide ongoing care. We need to know how to care for ourselves and exactly what care we should seek when we are through with active treatment. This is particularly important because many of us will be cobbling our care together ourselves, given our propensity to get “lost in transition” when our treatment comes to an end. To date, there is only modest uptake by oncologists to complete treatment summaries, despite quality measures that reinforce doing so.  Survivorship care plans enjoy similar modest popularity.  Both are necessary if we are to act independently on our own behalf.

The National Coalition of Cancer Survivorship, the American Society of Clinical Oncologists the Lance Armstrong Foundation and others have developed web- and print-based templates for care plans and each has active outreach efforts to make sure people know they need a survivorship care plan, that they complete the plan in collaboration with their oncologist and that they follow it. Alas, only a tiny percentage of cancer survivors currently have one.

Recent health care reform initiatives include provisions that may make it more likely that cancer survivors can get the health care services they need.  Better access to insurance coverage, the prohibition of rescissions (cancellations), a ban on lifetime and some annual coverage limits, coverage of dependents through age 26, all part of the Affordable Care Act, remove some barriers to ongoing care for cancer survivors. Federal investment in the implementation of Electronic Health Records should also make it easier to locate treatment records.

Where the IOM’s Lost in Transition report defined the terrain of health care for cancer survivors, Health Services for Cancer Survivors: Practice, Policy and Research provides a map.  Upon finishing the book, however, this thought still nags at me:

If special care for cancer survivors is the price of successful treatment, there seems to be a singular unwillingness to pay it.

While the diagnosis and treatment of cancer have vastly improved since my oncologist bid me farewell in 1974 with a handshake, too many Americans receive essentially the same when they finish treatment today.  Primary care and specialty clinicians have their own unique reasons to eschew providing care for cancer survivors.  Federal research dollars devoted to exploring post-treatment care for cancer survivors remain paltry. Health plans balk at paying for specialized screening and psychosocial services. And many of us finish treatment and just walk away from our whole cancer experience or we stick with the monitoring for five years and then disappear if those years have been uneventful.

Those of us who have been treated for cancer and are alive today are the fortunate beneficiaries of the U.S. taxpayers’ investment towards preventing and curing cancer.  Whether and how we and our clinicians monitor the risks that accrue to us, address the late effects of treatment we experience, and participate in the treatments of our second, third and fourth cancers are critical indicators of progress in that war.  Appropriate, evidence-based health care for all cancer survivors is the only way we will fully capture the value of our investment.

[i]  Cancer “survivor” is more commonly used to describe individuals from the point of diagnosis for the balance of their lives. However, this book uses the narrower definition and focuses on health care following active treatment.

[ii]  Michael Feuerstein and Patricia Ganz (ed).  Springer, 2011.

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