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Is A Study Of HIV Treatment For Mothers In Africa Unethical?


October 1st, 2014

A global health controversy erupted this summer when the prominent scientific journal Nature ran an article entitled “HIV trial attacked.” Within, commentators squared off over whether a huge ongoing study provides suboptimal and thus unethical treatment options to mothers with HIV in the developing world.

The multinational PROMISE study (for Promoting Maternal and Infant Survival Everywhere) is enrolling thousands of pregnant women with HIV in hopes of comparing mortality and other clinical outcomes between mothers who receive lifelong HIV therapy to mothers who receive shorter treatment durations if they have less advanced HIV disease.

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Turning Family Caregivers Into A Political Force


October 1st, 2014

Suzanne Mintz’s memorable Narrative Matters essay in the September issue of Health Affairs calls for attention to and support for family caregivers, and puts many important policy and practice improvements on the policy table. But the piece stops just a step short of giving voice to the fury that is needed to mobilize change. Why are family caregivers so polite? We ask for the bare essentials and say “please.” We beg for mere recognition and some honesty about the situation. Why are we so polite?

Are we waiting for hospitals, specialty physicians, health systems, pharmaceutical manufacturers, and others who are deeply invested in current patterns of care, thinking they might wake up one morning and start advocating against short-term self-interest? Or set out to learn about supportive services and family caregivers?

Of course, everyone loves family caregivers. Virtually anyone over the age of 50 can share tear-inducing stories of someone’s devotion to a frail elderly parent or a long-term disabled friend or relative. But we, the public, respond to the despair and frustration of family caregivers with the same shrug we give to young mothers whose lives are suddenly governed by feedings and changings. Our response to family caregivers has to change. The challenges are so great, and the level of support so deficient, for so many family caregivers.

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How Engaging Patients Can Improve Care And Health Outcomes


September 26th, 2014

Patients and caregivers are gaining momentum as powerful new resources in efforts to improve the health care system. They are increasingly becoming active partners in their own care, as well as seeking to make the health care delivery system more responsive to their needs and easier to navigate. And they are increasingly engaging as collaborators in planning and conducting research, and disseminating its results, with the goal of producing evidence that can help patients and those who care for them make better-informed decisions about the clinical choices they face.

It is this last trend that led the Patient-Centered Outcomes Research Institute (PCORI) to support Health Affairs in developing a series of videos illustrating some of the ways that patients are bringing their unique experiences and community connections to efforts to improve care for themselves and others. This includes stories of how patients are becoming partners in research designed to address the outcomes important to them, taking account of their own concerns and circumstances.

Seen through this lens, being a research partner goes well beyond being the subject of a trial. Rather, it means helping to guide researchers in formulating the questions to be studied, making the right clinical comparisons, looking at appropriate populations, and focusing on the outcomes important to patients. This should greatly increase the chance that the research findings will produce relevant results that can have a real-world impact — something we plan to evaluate carefully over time.

Meaningful patient engagement is at the heart of PCORI’s approach to research, and several of the patients featured in the videos have in fact partnered with researchers in just this way in patient-centered outcomes research (PCOR) studies we fund. They recognize that PCOR, a form of comparative clinical effectiveness research that focuses on issues of concern to patients, is a vital building block for developing truly patient-centered care and health policy, more effective treatments, and better outcomes.

In the following sections, we highlight the projects mentioned in the videos to give you an idea of how patients and community members are partnering in research projects.

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IOM Report Calls For Transformation Of Care For The Seriously Ill


September 24th, 2014

The new Institute of Medicine (IOM) report on care near the end of life in the United States was released last week. I had the privilege of serving on the Committee for the last two years, involved both in the writing of the report itself and in coming to consensus on its recommendations.

The name of the report and the charge to the Committee from the IOM was focused on “end of life.” However, the title, “Dying in America,” is something of a misnomer. The report itself focuses extensively on people with serious and chronic illness with indeterminate prognoses, why the current health care system fails so consistently to meet their needs, and what must change to improve the situation.

Hospice is the gold standard of care quality for those that are predictably dying and clearly at the end of life, and we are fortunate as a nation to have such a strong (mostly home) hospice infrastructure, but that’s not where most of the problems lie. The problems lie in the lack of options for people who are either not hospice-eligible (prognosis uncertain or continuing to want and benefit from disease treatment) or are referred to hospice much too late in their disease course to influence their experience and their families’.

The new report builds on the 1998 IOM report “Approaching Death” and goes well beyond the usual nostrums of calling for reimbursement for advance care planning and decrying all the “waste” in health care spending during the last year of life.

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Reconceptualizing Health and Health Care: Why Our Cancer Care Delivery System Is In Crisis


September 23rd, 2014

Cancer Care System in Crisis

Americans fear cancer. In a poll for MetLife, when participants were asked which major disease they feared most, 41 percent said cancer, 31 percent said Alzheimer’s disease, and small percentages of other respondents said other diseases. Not surprisingly, The National Institutes of Health has a budget allocation of $4.9 billion for 2014 to The National Cancer Institute, far more than any other Institute and over 25 percent of the NIH’s total funding to study organ-based diseases ($19.2 billion).

Despite this longstanding commitment to cancer research, the Institute of Medicine (IOM) reported in September 2013 that America’s cancer care delivery system is “in crisis.” The IOM determined that physicians ask for patients’ preferences in medical decisions only 50 percent of the time and that 25 percent of patients report that their clinicians fail to share important information, such as test results or medical history, with other care providers.

Of bankruptcies in the U.S., 33 percent are related to medical concerns, and many people are referring to the astounding cost of cancer therapies as another “toxicity” of the disease. Patients are too often prescribed cancer treatments that can cost double the conventional treatment options but have no evidence-based incremental benefits.

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Pediatric Asthma: An Opportunity In Payment Reform And Public Health


September 18th, 2014

Editor’s note: The post is informed by a case study, the third in a series made possible through the Merkin Initiative on Physician Payment Reform and Clinical Leadership, a special project to develop clinician leadership in health care delivery and financing reform. The case study will be presented on Wednesday, September 24 using a “MEDTalk” format featuring live story-telling and knowledge-sharing from patients, providers, and policymakers. 

The Clinical Challenge: A Chronic, but Manageable Illness

Asthma affects 7 million children – more than 10 percent of kids in the U.S. – and is the most common chronic childhood disease. Yet even with high levels of insurance coverage, 46 percent of pediatric patients have uncontrolled asthma. There are substantial gaps in appropriate prescribing and adherence to effective medications. In addition, a multitude of non-medical issues influence a child’s ability to control their asthma: low parental health literacy, poor quality housing, and environmental triggers such as pests, mold, and cleaning chemicals. As a result 800,000 kids visit the emergency department (ED) for asthma each year.

In 2007 (the latest year which data are available) the U.S. spent over $56 billion on asthma care, of which nearly $27 billion was spent on pediatric asthma. Medicaid is the primary payer for pediatric asthma related hospitalizations with 55 percent of the market. Better control may also mean lower medical costs, due to reductions in ED visits, admissions, and other health care utilization – patients with poorly controlled severe asthma cost nearly $5,000 more per patient per year compared to average pediatric asthmatic costs.

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Advancing Innovation To Eliminate Health Disparities


September 4th, 2014

The advent of population health management, community-based care coordination and mobile health technologies provide a promising opportunity to address longstanding and persistent health disparities. Separately each adds a new dimension to research and analysis, and to individual and community-level public health prevention and access to quality care. Together, providers, payers and researchers alike can acquire a richer understanding of contextual, environmental, and behavioral factors that contribute to disparate outcomes in health.

Existing innovations in data capture, epidemiologic profiling, clinical translation, and workforce development have yet to be taken to scale or appropriately deployed in a manner that would benefit vulnerable populations. Meaningful use technologies, for example, appear to be stuck in the proverbial pipeline with resistance in uptake and limited distribution of incentives. Meaning access and application in poor and disparate communities where they are more often subjects of research and not partners in innovation is far off.

What public health, and community-based and clinically focused interventions need is a fresh look at how health disparities are measured and the processes for application of solutions to needy populations.

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Exhibit Of The Month: Income-Related Disparities Associated With Negative Health Outcomes


August 29th, 2014

Editor’s note: This post is part of an ongoing “Exhibit of the Month” series. Readers who’d like to highlight other noteworthy exhibits from the same issue are encouraged to make their pitch in the comments section below.

Much is known about income-related disparities when it comes to preventative care and chronic conditions, but less so about the associations between poverty and negative health outcomes.

In “Geographic Clustering Of Diabetic Lower-Extremity Amputations In Low-Income Regions Of California,” published in the August issue of Health Affairs, authors Carl Stevens et al. identify diabetic amputation “hot spots” in low-income urban and rural areas of California (Exhibit 2).

Based on California data from 2009, they isolated 7,973 lower-extremity amputations in 6,828 adults with diabetes. They compare this to a corresponding map of poverty rates in the same region based on households who reported incomes below 200 percent of the poverty level (Exhibit 3).

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Remembering Jessie Gruman


August 15th, 2014

Jessie Gruman, founding president of the Center for Advancing Health, died on July 14 after a fifth bout with cancer. Jessie was a hero to patients, families, and health care providers for her selfless work to help people better understand their role and responsibilities in supporting their own health.

Jessie was an extraordinary soul and a pioneering activist in the person-centered care movement. She used her personal experience with illness to inspire a life’s work aimed at developing practical resources that support peoples’ engagement with their health care. She improved care and improved lives.

Jessie was first diagnosed with cancer at the age of twenty. She was thrown into a world that spoke in a foreign tongue: “medicalese.” She was expected to self-administer a complex medication regime, which she openly admits she sometimes skipped. Jessie described the hard-working health care professionals who fought to make her better all relying on her, a scared twenty-year-old, to understand what they said and implement their plan. She realized the enormous power of people who are engaged in their own health, while also recognizing the challenges to such engagement.

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Narrative Matters: How Acute Care Training Is Failing Patients With Chronic Disease


August 8th, 2014

In the August Health Affairs Narrative Matters essay, a doctor questions how well acute care medical training serves those with chronic disease while watching the decline of two patients with kidney failure, one healthier and one frail. Dena Rifkin’s article is freely available to all readers, or you can listen to the podcast.

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The Double-Faced Pain Problem: Reflections On July’s Narrative Matters Essay


July 28th, 2014

Reading Janice Lynch Schuster’s tormented account of her persistent pain and her journey through the medical maze of care in the July issue of Health Affairs, I’m reminded of how millions of Americans are living with not one, but two, pain challenges. The first is the epidemic of over-prescription; the second is the condition of endemic under-medication.

In her essay “Down The Rabbit Hole: A Chronic Pain Sufferer Navigates The Maze Of Opioid Use,” Schuster herself hints at the dual issues when she writes: “pain patients like me often feel trapped between the clinical need to treat and manage pain and the social imperative to restrict access to such drugs and promote public safety.”

People coping with chronic pain confront a double-faced problem: a society simultaneously providing too much relief and too little. Which face of the American pain dilemma any patient will experience depends on where they live, who they are, and what kind of practitioner they encounter in their pursuit of relief. As Schuster writes, the situation is perplexing, maddening, and sometimes arbitrary.

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Investing In The Social Safety Net: Health Care’s Next Frontier


July 7th, 2014

Editor’s note: In addition to Jennifer DeCubellis, Leon Evans also coauthored this post. 

The United States spends 250 percent more than any other developed country on health care services, yet we are ranked below 16 other countries in overall life expectancy. A less frequently discussed statistic, however, is the degree to which the U.S. under-invests in social services: for every dollar spent on health care, only 50 cents is invested in social services. In comparison, other developed countries spend roughly $2 on social services for every dollar spent on health care. The U.S. is 10th among developed countries in its combined investment in health care and social services.

This imbalance has ramifications for the nation’s Medicaid program, where just five percent of beneficiaries with complex health and social problems drive more than 50 percent of all program costs. Many individuals in this high-cost group have chronic complex medical, behavioral health, and/or supportive service needs, and in the absence of coordinated intervention, they tend to be frequent visitors to emergency rooms and have high rates of avoidable hospital admissions.

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Payment And Delivery Reform Case Study: Cancer Care


July 3rd, 2014

Editor’s note: In addition to Darshak Sanghavi, Mark McClellan, and Kavita Patel, this post is also authored by Kate Samuels, project manager at Brookings. It is adapted from a forthcoming full-length case study, the second in a series from the Engelberg Center’s Merkin Initiative on Physician Payment Reform and Clinical Leadership designed to support clinician leadership of health care delivery, payment, and financing reform. The case study will be presented during the Merkin Initiative’s “MEDTalk” event on July 9 from 10:30 AM to 12:30 PM EDT, featuring live story-telling and knowledge-sharing from patients, providers, and policymakers.

Oncology practices and hospitals across the nation struggle with providing sustainable, comprehensive, and coordinated cancer care. Clinical leaders with strategies and models to improve the quality and value of health care often don’t know how to navigate the landscape of payment and delivery reform options to sustain their innovations.

We use a case study approach to investigate and tell the story of the New Mexico Cancer Center (NMCC), an independent cancer center that is experimenting with innovative ways to improve patient-centered oncology care. We identify challenges for creating sustainable and supportive payments models, and we share the broader strategic and policy lessons for adopting alternative payment models.

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Family Caregiving And Palliative Care: Closing The Policy Gap


July 2nd, 2014

Editor’s note: Carol O’Shaughnessy also coauthored this post. This post is part of a periodic Health Affairs Blog series on palliative care, health policy, and health reform. The series features essays adapted from and drawing on an upcoming volume, Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform, in which clinicians, researchers and policy leaders address 16 key areas where real-world policy options to improve access to quality palliative care could have a substantial role in improving value.

Family caregivers — what would we do without them?  So why can’t we do more for and with them?

Many studies have demonstrated that family caregivers provide a wide range of essential care to people with serious chronic illnesses or disabilities — the same people who can benefit from palliative care applied as an ongoing approach to care, not just a hospital-based intervention.

It is family caregivers who are responsible for much of the complex care at home, including managing pain and other medications, monitoring equipment, and communicating with the palliative care team.  To say that most family caregivers are not prepared to take on this demanding role is an understatement.

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New Drug And Device Approval: What Is Sufficient Evidence?


July 1st, 2014

Editor’s note: In addition to Jonathan Darrow, this post is also coauthored by Aaron Kesselheim. 

The federal Food, Drug, and Cosmetic Act gives the Food and Drug Administration (FDA) the authority to evaluate all prescription drugs and high-risk medical devices before they can be marketed to physicians and patients to ensure that they are safe and effective.

However, there is growing pressure to lessen the traditional standards for defining “safe and effective” for particularly promising therapies and accelerate patient access to these products.

A recent national health policy conference in Washington, D.C., explored the nature of the evidence needed for the regulatory approval of new therapeutics and the implications for patient care. The conference was organized by the Program On Regulation, Therapeutics, And Law (PORTAL) at Brigham and Women’s Hospital/Harvard Medical School, the National Center for Health Research, and the American Academy for the Advancement of Science (AAAS).

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Call For Papers: Care Of Older Adults


June 27th, 2014

Health Affairs encourages submissions from authors on topics surrounding the care of older adults, including new models of care and the management of multiple chronic conditions among this population. We are interested in work that spans the full range of care settings, including primary care and specialty practices, hospitals, nursing homes and other long-term care settings.

In addition to exploring topics that are directly related to the provision of care, we also welcome papers on a broad array of related dimensions that affect care, access, and affordability, such as financing models, coverage, and size and composition of the workforce. We are grateful to The John A. Hartford Foundation for providing support for our ongoing coverage of these topics.

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Correcting The Blind Spot In Accountability: The Role Of Pharmacy Care


June 25th, 2014

Editor’s note: In addition to William Shrank, this post is also coauthored by Andrew Sussman, Patrick Gilligan, and Troyen Brennan.

The Centers for Medicare and Medicaid Services (CMS) recently issued a Request for Information (RFI) to solicit suggestions about how to improve the Accountable Care Organization (ACO) programs. CMS stated that they seek recommendations about how the ACO program might evolve to “encourage greater care integration and financial accountability.”

The RFI explicitly stated that they seek information about how to better integrate Part D expenditures into ACO cost calculations to make pharmaceuticals part of the approach to care delivery and health care transformation.

The deadline for comments about encouraging Part D integration in ACOs has now passed. But the issue extends beyond ACOs. In addition, bundled payments and patient-centered medical home programs target hospitals and primary care providers to promote higher quality and lower cost care. All these programs have largely excluded prescription drug costs in their calculus, and offer no direct incentives for Part D plans to participate in and improve care.

Nonetheless, retail pharmacies and Part D plans have developed a number of strategies to participate. As CMS and policymakers reconsider ACO regulations to stimulate greater integration of prescription drug use in delivery system reform, we thought it important to offer a description of the marketplace response to payment reform activities at large.

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Treated Prevalence Versus Spending Per Case: Responding To Starr And Coauthors


June 17th, 2014

I was surprised but pleased to see the Martha Starr, Laura Dominiak, and Ana Aizcorbe article in the May issue of Health Affairs replicating earlier work of Charles Roehrig and David Rousseau. These papers attempt to understand the role that treated disease prevalence and spending per case treated assume in accounting for the growth in average per capita healthcare spending. (Treated disease prevalence can increase when either a disease becomes more common or is diagnosed more frequently.) Starr and coauthors, like Roehrig and Rousseau, conclude that spending per case treated accounts for more of the growth in per capita spending than treated prevalence.

In our own work, my colleagues and I have addressed a different question. Our line of research focuses on changes in total health care spending – as opposed to per capita spending — over time. We have updated this work now through 2011 and our major conclusion remains the same; the rise in treated disease prevalence accounts for a slightly larger share of the growth in total healthcare spending than spending per case treated.

The three research teams employ different methods and use different spending measures. (In an earlier appendix, we described in detail the differences between our approach and that of Roehrig and Rousseau.) For example, our expenditures include home health and dental services, which are excluded in the paper by Starr and colleagues.

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Health Affairs June Issue: Where Can We Find Savings In Health Care?


June 2nd, 2014

The June issue of Health Affairs, released today, features various approaches to cost-savings in the U.S. health care system. A variety of articles analyze the effects of potential policy solutions on the Medicare and Medicaid programs and their impact on the health of beneficiaries and tax payer wallets.

Federal approaches to reduce obesity and Type 2 diabetes rates by improving nutrition could work—but the how matters. Sanjay Basu of the Stanford University School of Medicine and coauthors modeled the effects of two policy approaches to reforming the Supplemental Nutrition Assistance Program (SNAP), which serves one in seven Americans. They found that ending a subsidy for sugar-sweetened beverage purchases with SNAP dollars would result in a decrease in obesity of 281,000 adults and 141,000 children, through a 15.4 percent reduction in calories by the lowering of purchases of this source. They also found that a $0.30 credit back on every dollar spent on qualifying fruits and vegetables could more than double the number of SNAP participants who meet federal guidelines for fruit and vegetable consumption.

With more than forty-six million people receiving SNAP food stamp benefits, the authors suggest that policy makers closely examine the implications of such proposals at the population level to determine which will benefit people’s health the most and prove most cost-effective.

If you’re between ages 15–39 when you are diagnosed with cancer, the implications later in life extend well beyond your health. Gery P. Guy Jr. of the Centers for Disease Control and Prevention and coauthors examined Medical Expenditure Panel Survey data and determined that survivors of adolescent and young adult cancers had annual per person medical expenditures of $7,417, compared to $4,247 for adults without a cancer history. They also found an annual per capita lost productivity of $4,564 per cancer survivor — because of employment disability, missed workdays, and an increased number of additional days spent in bed as a result of poor health — compared to $2,314 for adults without a cancer history.

The authors suggest that the disparities are associated with ongoing medical care needs and employment challenges connected to cancer survivorship, and that having health insurance alone is not enough to close the gap. They stress the importance of access to lifelong follow-up care and education to help lessen the economic burden of this important population of cancer survivors.

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Reducing Barriers To Care For Patients With Parkinson’s And Other Chronic Diseases


May 29th, 2014

Editor’s note: For more on this topic, see the February issue of Health Affairs, which features a series of articles on connected health. 

It is one of the greatest ironies of our time that the United States is home to some of the highest-quality medical care in the world, yet millions of Americans cannot access it. This problem is all too familiar for Parkinson’s patients who could receive better clinical outcomes simply by being connected to a specialist outside of their immediate vicinity.

Every year, approximately 60,000 people in the U.S. are diagnosed with Parkinson’s disease, a chronic, progressive neurological disease for which there is no cure. But there is hope.

The TELE-MED Act

With the use of technology, there is an easy way to allow patients to integrate their complex disease management into their daily lives while eliminating frequent and disruptive travel. Unfortunately, this option – popularly known as telemedicine – is not properly regulated, and lawmakers need to update licensure regulations though common sense solutions such as the TELE-MED Act (HR 3077).

This bipartisan measure introduced by Congressmen Nunes (R-CA) and Pallone (D-NJ) would enable health care providers in the Medicare program to treat Medicare patients virtually across state lines without having to obtain additional state medical licenses.

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