AcademyHealth invited longtime member Donald Steinwachs, PhD, Health Policy and Management professor at the Johns Hopkins Bloomberg School of Public Health, to reflect on the recent release of the National Institute of Mental Health “Strategic Plan for Research.” Dr. Steinwachs is a former AcademyHealth board member and the recipient of our 2013 Distinguished Investigator Award. His post follows. 

Recently, Dr. Insel shared a vision for NIMH’s future science that has four objectives, two of which are aligned with health services research (HSR). Objective 3 is to strive for prevention and cures of mental illnesses. Strategies include developing new treatments, tailoring existing and new treatment interventions to optimize outcomes, and to test these interventions in the real world community practice settings. One can envision research teams of clinical and basic scientists working with health services researchers in the evaluation of tailored and new interventions in community practice settings. The HSR field understands that there are many factors that influence the effectiveness of mental health interventions, including characteristics of the practice, its capacity for outreach and follow-up, engagement of the consumer’s family and support network, and the extent to which the consumer’s basic needs are being met for income, housing, and comprehensive health care. An important part of the science to be learned through the translation of clinical interventions into real world settings will be how to tailor delivery of health services to overcome the many barriers persons with mental illness face in accessing care and adhering to treatment over time.

Objective 4 is to strengthen the public health impact of NIMH supported research. The strategies very much reflect an HSR orientation, including (1) research to improve the efficiency and effectiveness of mental health services, (2) establishing research-practice partnerships with a continuous quality improvement emphasis, (3) developing innovative service delivery models to meet the varying needs of diverse communities and populations, and (4) assessing the public health impact of mental health services innovation. To me the public health impact is central to measuring success and identifying and learning when interventions fail to improve public health. I remind myself frequently that persons with serious mental disorders have a life expectancy of about 55 years and their leading causes of death are the same leading causes all of us will die from but many years later. Dr. Insel discusses preemptive medicine as important for reducing the burden of mental illness and improving recovery. This needs to be extended to include comprehensive preemptive care for medical and preventive services for persons with mental illness. Public health impact assessment should take into account the person’s health and wellbeing as key outcomes, not just morbidity and mortality. Progress has been made to improve wellbeing. More mentally ill are able to get jobs today thanks to evidence-based supported employment interventions. Success is limited, however, due to lack of funding by health insurers and by states for supported employment interventions.

I find the NIMH strategic objectives to be exciting but am concerned about the capacity of NIMH, AHRQ, PCORI and others to fully fund the research needed. The personal and social costs to society of mental illness are not widely appreciated. We only need to remember the burden of mental illness; one quarter of us have a mental-emotional problem at any time and half of us having a mental illness during our lifetime.

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Written by John Wilbanks and Erin Holve.

Early last month, Apple announced ResearchKit, a framework for running clinical studies on the iPhone, as well as the first five applications that use ResearchKit. These studies are being run for Parkinsons disease and more than 50,000 people have enrolled in the first two weeks. Each of those participants enrolled via a novel e-consent process developed by Sage Bionetworks  as an EDM Forum Collaborative Project.

There’s a tremendous amount of excitement about these new tools in ResearchKit because they have the potential to make it far easier for more individuals to participate in patient-centered outcomes research (PCOR). Doing so will ideally lead to more interest (and perhaps investment) in research questions prioritized by individuals, patients, caregivers, and communities, as well as the faster uptake and use of new evidence that comes out of these studies. At the same time, privacy and data security are paramount concerns that must be addressed to preserve the public’s trust in research.

Consent is an important part of participant engagement and PCOR for many reasons. From an ethical perspective consent is an important strategy to ensure research participants preserve their autonomy and are fully informed partners in research who understand any risks of participating in research. Consent also asserts an individual’s right to their own data, as authorized by the Health Insurance Portability and Accountability Act (HIPAA) and so can support access and engagement with participants’ own data. However, lengthy consent documents may not promote comprehension of key concepts such as research risks, or facilitate engagement. This is where participant-centered e-consent comes in.

At the beginning of our collaboration to build the e-consent process, we co-developed a multistakeholder process that began with stakeholder interviews from throughout the EDM Forum’s collaborative network, including ethicists, technologists, scientists, patient advocates, clinical data specialists, and more. These interviews fed a user-centered design process that led to the Sage Bionetworks design for e-consent: a tiered, hierarchical information “stack” that use iconography and simple language, paired with a quiz-based assessment of comprehension post-consent before data collection begins. The goal of the approach is to help those running studies to convert a static consent document into processes that extract the most important concepts of an e-research study, and make those concepts easier to understand and remember than rendering large quantities of text on a small screen.

The first “tier” of the information stack is icon-dominant. The screen is divided into elements indicating progress through the consent process, with the primary element devoted to a visual indication of the essential clinical study concept. Concepts for the final RK consents include: study activities, phone sensor data, data processing and use, data protection, potential benefits, risks to privacy, withdrawal, and more. It is essential for study designers to stop and consider: what are the concepts that participants must know to make an informed choice? Those concepts then must be presented at the top “tier” of the consent process.

The second “tier” is text-dominant. This is where clear language about the concept is expressed, providing more detail for those who wish. In future releases we plan to expand the text-dominant tier to include hyperlinks, multimedia, and other, more interactive ways to communicate essential clinical concepts to participants.

The slides below are from the Parkinson mPower app, but reflect a fundamentally shared experience across all five apps at the first tier. Each app of course has completely different text in their second tier of “learn more” screens, and different consent document. Each app was approved by the IRB for the sponsoring institution.

After we developed the first implementation of the concept, as part of our collaborative methods project, the EDM Forum convened a workshop featuring bioethicists, privacy experts, patient advocates, technologists, clinicians, data scientists, and more. Participants came from government, non profit, academia, and corporate sectors. During the workshop we collectively reviewed the core concept of tiered information access as well as the first set of designs for an actual e-consent process.

Thanks to extensive feedback from the workshop and other stakeholders, we began a phase of refinement and regulatory submission. Our Parkinsons study was approved by Western IRB in the fall of 2014, but rather than launching the study immediately, we continued showing our designs to stakeholders and refining. We gave a series of public lectures and posted slides to the internet, using social media and other systems to attempt to gain the widest possible feedback.

As we showed the designs, many parties expressed interest in using one part or another of the design methodology. So we decided to release all of our work as an open source “toolkit” for anyone interested. We released the alpha version of the toolkit during the Trans-NIH Workshop to Explore the Ethical, Legal and Social Implications (ELSI) of Citizen Science ().

All five of the studies launched on March 9 and have achieved impressive enrollment numbers, but the work is far from done. We plan to study the “informedness” of our cohorts over time, and to continue developing additional methods and practices for using technology to assist in making informed consent more “informed” – although the key fundamentally is not technology, but the forcing function that makes a clinician really think about the key concepts in her study, and how to represent them visually.

AcademyHealth’s EDM Forum is committed to bridging diverse perspectives to collaborate and advance these discussions that proved valuable to the development of the e-consent process. The community is welcome to join in the discussion on twitter (@edm_ah) and participate in our ongoing activities by emailing edmforum@academyhealth.org.

The EDM Forum was created through a cooperative agreement from the Agency of Healthcare Research and Quality (AHRQ) grant (U13 HS19564-01). Ongoing support for the EDM Forum and the Concordium meeting comes from AHRQ U18 HS022789-01. Meeting materials, presentations, and eGEMs publications do not reflect the official view of AHRQ or the United States Department of Health and Human Services. 

 

 

 

 

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As I wrote previously, the United Kingdom’s approach to health services coverage decisions offers a contrast to that in the U.S. The U.K.’s National Institute for Health and Care Excellence (NICE) makes coverage recommendations driven in large part by cost-effectiveness, but also considering other factors such as uncertainty, innovation, non-health outcomes, end-of-life considerations, and stakeholder perspectives on quality of life gains. And in the U.S.?

Well, the knock on the U.S. is that we cover treatments too readily, helping to support the application of costly health care technology even when it does little good. Moreover, we have very few institutions that systematically evaluate the strengths and limitations of coverage of various treatments. In this way, we’re very different from the U.K.

But we don’t have zero institutions. A recent article in Health Affairs by James Chambers and colleagues highlights one. Believe it or not, it’s Medicare. The article focuses on Medicare’s national coverage decisions (NCDs), finding the program has become more restrictive over time. Yes, there are things even Medicare won’t cover.

Though speculative, the authors open their article suggesting we might take what’s happened in Medicare as indicative of coverage in general.

Reports from the field suggest that it is becoming increasingly difficult to gain coverage and reimbursement for new medical interventions. [...] [V]arious trends indicate that coverage and reimbursement for new medical interventions are becoming more restrictive.

Thus, though most Medicare coverage decisions are made by regional contractors, NCDs may offer a window of coverage policies across insurers.

The authors related 213 coverage decisions made between 1999 and 2012 to type of evidence considered (e.g., randomized trials, other studies, clinical reviews and guidelines, professional society statements); to volume of evidence (e.g., frequency each type was used for each decision, number of patients included in relevant studies); and to consistency of evidence. Breaking that time span into four quartiles with roughly equal numbers of decisions, they found a downward trend in positive decisions (i.e., to cover a treatment). During the most recent quartile (March 2008-August 2012), about 32% of decisions were positive. During the first quartile (February 1999-January 2002) 80% were positive.

The authors also ran a supplemental analysis that included controls for the availability of alternative medical interventions and cost-effectiveness. The authors concluded that

national coverage determination decision making is consistent to an extent with the evidence base, in that coverage is associated with the included proxy variables that attempt to characterize evidence quality. [...] [W]e found that the availability of alternative interventions and the lack of an associated estimate of cost effectiveness decreased the likelihood of Medicare coverage—even though CMS does not formally consider cost-effectiveness evidence in national coverage determinations for treatment. However, it is notable that the magnitude of the ratio between cost and quality-adjusted life year—that is, the relative cost-effectiveness of the medical intervention—did not appear to influence coverage.

These findings echo a prior publication using NCD data from 1999 through 2007 (195 coverage decisions) that found that good or fair quality supporting evidence and presence of an alternative intervention was positively associated with coverage. But coverage was not associated with an estimate of cost-effectiveness.

For all that, it remains true that most Medicare coverage decisions are made by regional contractors, not at the national level. Moreover, as Nicholas Bagley wrote in an article in The Georgetown Law Journal, Medicare yields the vast majority of clinical decisions to physicians. Its modest number of NCDs don’t exert much influence.

[T]here is suggestive evidence that Medicare contractors do not reliably enforce NCDs []. For just one example, Medicare purports not to cover colonoscopies within ten years of a prior colonoscopy that revealed no abnormalities. Yet Medicare contractors deny only about two percent of claims for inappropriate, repeat colonoscopies.

Perhaps NCDs have trended toward evidence and greater restrictiveness. But their small number and lack of influence may render them relatively meaningless. The U.S. is very different than the U.K.

Austin B. Frakt, PhD, is a health economist with the Department of Veterans Affairs and an associate professor at Boston University’s School of Medicine and School of Public Health. He blogs about health economics and policy at The Incidental Economist and tweets at @afrakt. The views expressed in this post are that of the author and do not necessarily reflect the position of the Department of Veterans Affairs or Boston University.

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Last Fall, I wrote about some research on how the ACA’s young adult provision seems to have impacted outcomes. The short of it was: not too much. But research continues, and a new study from the Journal of Health Economics gives us another data point. “Impacts of the Affordable Care Act dependent coverage provision on health-related outcomes of young adults“:

The first major insurance expansion of the Affordable Care Act – a provision requiring insurers to allow dependents to remain on parents’ health insurance until turning 26 – took effect in September 2010. We estimate this mandate’s impacts on numerous outcomes related to health care access, preventive care utilization, risky behaviors, and self-assessed health. We estimate difference-in-differences models with 23–25 year olds as the treatment group and 27–29 year olds as the control group. 

This study used the Behavioral Risk Factor Surveillance System (BRFSS), a phone survey conducted by state health departments with help from the CDC to collect data on health and behaviors from a national sample. Because it is conducted in waves, data exist both before and after the young adult provisions of the ACA went into effect. For the purpose of these analyses, the researchers compared people age 23-25 to those 27-29. Those who were 26 year olds were excluded because they could fall into either group depending their birthday.

Access-related outcomes of interest included whether young adults had health insurance, had a primary care physician, or had avoided care because of cost in the previous year. They measured preventive care utilization by flu vaccination rates, check-up rates, and PAP tests for women. Risk factors measured included alcohol use, tobacco use, BMI, obesity, and exercise. Finally, measures were created for both physical and mental health, as well as overall health. Analyses controlled for many factors, which are all listed in the manuscript.

One of the clearest results is that access improved along a number of dimensions. The insurance coverage rate among 23-25 year olds improved about 6%. The probability of having a primary care doctor increased by 2-3%, and the chance of avoiding care because of cost dropped about 2%.

However, like in prior work, access does not completely translate into utilization. There was no increase in preventive care utilization. If anything, the rates of flu vaccinations and pap tests seemed to go down after the young adult provision began.

Most risky behaviors were unaffected by the young adult provision, but the probability of risky drinking went up about 1%.  BMI went down, though, as did obesity in a number of models.

Measures of health were improved by the provision, however. Overall excellent health went up about 1.5% and very good/excellent health went up just under 2%. Only the former was statistically significant, though. Most of the individual measures of physical or mental health were unaffected by the changes in insurance.

The ACA has been in effect for about 5 years now, and everyone wants to talk about whether it’s a success or not. This paper is an attempt to answer that question for the young adult provision. The answer remains, unfortunately, complicated. These results suggest, once again, that while access improved, the utilization of preventive care did not. The effect on risky behaviors was mixed. And self-reported health improved at the high end of the spectrum. It appears that the ACA continues to make it potentially easier for people to get care if they need it, but the direct effects of them using that care – those outcomes aren’t as easy to see.

Aaron

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I’ve been writing a lot about suicide in kids lately, first at The Upshot and then over at The Incidental Economist. We even did a Healthcare Triage that touched on new data. But a recent study and editorial in JAMA Pediatrics, “Widening Rural-Urban Disparities in Youth Suicides, United States, 1996-2010,” is worth another look:

Importance  Little is known about recent trends in rural-urban disparities in youth suicide, particularly sex- and method-specific changes. Documenting the extent of these disparities is critical for the development of policies and programs aimed at eliminating geographic disparities.

Objective  To examine trends in US suicide mortality for adolescents and young adults across the rural-urban continuum.

Design, Setting, and Participants  Longitudinal trends in suicide rates by rural and urban areas between January 1, 1996, and December 31, 2010, were analyzed using county-level national mortality data linked to a rural-urban continuum measure that classified all 3141 counties in the United States into distinct groups based on population size and adjacency to metropolitan areas. The population included all suicide decedents aged 10 to 24 years.

Main Outcomes and Measures  Rates of suicide per 100?000 persons.

Over the 15 years of this study, almost 66,600 youths died by suicide. The most startling finding (at least to me) was that the suicide rate in rural areas was almost twice that of urban areas. This held true for both males and females. Further, even after controlling for both individual and geographic variables, the gap between urban and rural suicide rates has been increasing.

Suicides by suffocation/hanging have been increasing (as noted in the TIE post). Firearm rates have gone down. However, the rates of both of these types of suicide were higher in rural areas, and the disparities have been worsening.

But trends only tell part of the story. More than half of all suicides committed during the study were by firearm. An accompanying editorial by JAMA Pediatrics editor Fred Rivara* makes a compelling argument that we’ve been ignoring suicide in our national debate on guns for too long.

First, he cites CDC data. In 2012, there were 33,363 deaths by firearms in the United States. But only 12,093 of these deaths were by homicide. About 62% of deaths by firearms, or 20,666 of them, were suicides. Guns are used far more often in suicides than homicides. He then cites research showing that access to guns can make an impulsive suicide attempt far more likely to succeed. Almost half of patients who have survived a suicide attempt report that the time between thinking about suicide and attempting is was 10 minutes or less.

People, especially kids, aren’t always planning suicide. It’s a spur of the moment decision. And having access to a gun can make things far worse. Guns work. Suicide attempts with a gun succeed more than 85% of the time; suicide attempts with poison or overdoses succeed less than 2% of the time. Meta-analyses show that there is a significant association between having access to a firearm and a higher chance of a suicide succeeding.

If someone wants to commit suicide, they can find a way, with out without access to a gun. That’s very true. But certainly some could be prevented. Moreover, given the impulsivity of suicide attempts by youth, it’s also possible that reducing access of youth to guns even without restricting the sale and ownership of guns by legal adults might make a difference–for example by increasing safe, locked storage apart from ammunition.

Rivara makes three recommendations as to how physicians can help:

  1. In health supervision visits, inquire in a nonjudgmental tone whether firearms are present in the home. If the patient is depressed or has other signs of mental illness, the physician should make greater efforts to inquire about firearms in the home.

  2. If firearms are present, forgo one’s personal philosophical beliefs about firearm ownership and concentrate on the pragmatic matter of safe storage.

  3. Participate in community efforts to promote safe storage of firearms. The success of community campaigns is enhanced by the authoritative voices of police officers who are enlisted as spokespersons on gun safety.

Many have long advocated for these. Yet, recent efforts have made it illegal for physicians to even ask about guns at all in some areas of the country. I think that’s a mistake, as I argued here at The Upshot. We need to continue in our efforts at harm reduction, and continue to work towards making suicide rarer among youth in the United States.

Aaron

*Full disclosure: The pediatric health services research world is small. Fred is a longtime mentor and friend (I trained with him in Seattle), and I serve on the editorial board of JAMA Pediatrics.

 

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A paper published last year by Stryjewski et al. found that Massachusetts health reform was not associated with health improvements for patients with certain chronic conditions. A different paper, published earlier in the year by Sommers et al., found that Massachusetts health reform was associated with reductions in mortality.* How could both findings be true?

The answer: Different samples yield different results. Often such a glib response would be a cop out. But here it isn’t. Let’s look carefully at the samples to see why.

I summarized the sample for the Sommers study in my editorial.

[F]indings [are] based on county-level data from the Centers for Disease Control and Prevention and other sources. These data permit a much larger sample (270 000 adults gaining coverage) than work relying on smaller natural experiments; they also allow a longer follow-up. These reasons may have accounted for the investigators’ finding of a statistically significant reduction in all-cause mortality (2.9%) associated with reform in Massachusetts counties compared with propensity score–selected control counties in other states.

The key here is that the sample included data from all Massachusetts counties, comparing them to matched counties from other states. Hold that in your head as we consider the sample in the Stryjewski study. Quoting the paper:

We examined uninsured and insured patients seen in the Partners HealthCare network, the largest delivery system in Massachusetts. It includes Massachusetts General Hospital (MGH), Brigham and Women’s Hospital (BWH), their outpatient departments, and their 20 outpatient community health centers and satellite locations. [...] At Partners, patients with no insurance had their hospital and outpatient services billed to the uncompensated care pool and were not required to make copayments. Physicians waived their portion of the total care charges for uncompensated care pool patients on a pro bono basis. Uninsured patients were required to pay a $1–$3 monthly copayment for prescription drugs, but a voucher to waive payments was available.

There are two things to note. (1) The study compared “uninsured” to insured patients from before and after health reform in Massachusetts. But, in this sample, “uninsured” patients weren’t that uninsured. They had their care billed to an uncompensated care pool, without copayments! (2) Moreover, the sample is drawn from patients seen at Partners and who had received blood sugar and cholesterol tests. So they were already getting some care for the specific conditions in question before the reform took effect. This is very different from a sample of genuinely uninsured patients not seen by health care providers. Such individuals would have been represented in the data used by Sommers.

To use a technical term, there’s an ascertainment bias in the Stryjewski study. The investigators could only measure characteristics of an “uninsured” (but not really) population that received care. Given the nature of “uninsurance” among those in the sample, that care may have been about as comprehensive as that of insured patients. If the groups basically look the same in that regard, one shouldn’t expect to find a contrast.

This is about all I need to know to explain a big reason why the study authors didn’t observe any improvement for the chronically ill populations it studied (those with high cholesterol, diabetes, or hypertension). The authors turn to the study limitations in their discussion:

Generalizability of our findings to other states should be considered carefully. Compared with Massachusetts, other states might not have as generous a compensated care pool, might not have baseline rates of uninsured patients as low, and might not have as high a concentration of health providers. It is possible that patients with more severe access limitations in other states would have improved outcomes after receiving insurance. On the other hand, it is also possible that other states will have fewer resources for enrolling, subsidizing, or treating uninsured patients after health reform, so that outcomes could be worse compared to those we detected. [...]

[The study design] limits generalizability of our findings to uninsured patients who have contact with the health care system.

Having said all that, what the Stryjewski et al. does tell us is that, for the population studied, the (potentially) chronic care coordination functions of insurance did not seem to make a difference. Maybe those functions weren’t in place or maybe they didn’t work. This is not an insubstantial finding. Chronic disease management is precisely where we should be targeting our efforts to improve health and reduce spending. If insurers aren’t playing a role, why do we have them?

This post begins with links to many others about it.

Austin B. Frakt, PhD, is a health economist with the Department of Veterans Affairs and an associate professor at Boston University’s School of Medicine and School of Public Health. He blogs about health economics and policy at The Incidental Economist and tweets at @afrakt. The views expressed in this post are that of the author and do not necessarily reflect the position of the Department of Veterans Affairs or Boston University.

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There’s little disagreement that health care providers are consolidating. I do not detect a similar degree of agreement about the consequences.

Hospitals and other providers tend to justify consolidation on the grounds that it will improve quality and reduce costs. For years, health policy experts viewed such claims skeptically.

Last summer, Thomas Tsai and Ashish Jha reminded us that there is little evidence that consolidated hospitals improve quality. Quality improvement comes not from size, but from leadership, they wrote. Indeed, work by Jha, and other work by K. John McConnell and others suggests that hospitals boards, CEOs, and other levels of management can play key roles in quality improvement. Moreover, hospitals facing greater competitive pressure have better management practices. In a broad review of the evidence, Martin Gaynor and Robert Town found that, in general, when hospitals consolidate prices go up and quality suffers.

More recent work, published in JAMA, suggests that when they consolidate, “health care organizations and perhaps physicians benefit, in the form of higher prices,” [click to continue…]

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A lot of time, and a lot of ink, has been spent talking about access and Medicaid. Many who oppose the expansion of the program will point to the fact that sometimes evidence shows that fewer doctors accept Medicaid insurance than other types of coverage. There’s some truth there. Medicaid does often reimburse at a lower rate than other insurance coverage, and sometimes doctors don’t want to accept those lower rates. But there’s more to the story.

The recent Medicaid expansion, however, has provided us with the opportunity to explore how children are able to find doctors when on Medicaid and CHIP, especially as Medicaid raised its reimbursement rates as part of Medicare parity. Sandra Decker explored much of this in a recent manuscript, “Acceptance of New Medicaid Patients by Primary Care Physicians and Experiences with Physician Availability among Children on Medicaid or the Children’s Health Insurance Program“:

Objective. To estimate the relationship between physicians’ acceptance of new Medicaid patients and access to health care.

Data Sources. The National Ambulatory Medical Care Survey (NAMCS) Electronic Health Records Survey and the National Health Interview Survey (NHIS) 2011/2012.

Study Design. Linear probability models estimated the relationship between measures of experiences with physician availability among children on Medicaid or the Children’s Health Insurance Program (CHIP) from the NHIS and state-level estimates of the percent of primary care physicians accepting new Medicaid patients from the NAMCS, controlling for other factors.

More children who lived in states where fewer than 60% of primary care providers accepted new Medicaid patients had trouble finding a doctor or difficulty finding someone to see their child (2.9%) than in states where 75% or more of primary care physicians did (1.1%). No such differences existed for those with private insurance. More children in the <60% states didn’t get care in the last year because waits in the office were too long (8.6%) than in the 75%+ states (4.0%), too. The disparities, and the difficulties, were worse for children who had a significant health condition or developmental disability. Almost 16% of kids with significant health conditions or developmental delay experienced a clinic not accepting their insurance in states with less than 60% of primary care docs accepting new Medicaid patients, versus only 3.5% of such kids having this issue in states with at least 75% of primary care docs accepting new Medicaid patients.

One of the nice aspects of the ACA, though, was that it raised reimbursement to more Medicare like levels. This study tried to see if that might make a difference. The answer is a qualified “yes”. The data show that in states where the Medicaid to Medicare primary care fee ratio was under 50%, about 10% of kids with a health condition or developmental delay experienced a doctor’s office or clinic not take their insurance, verses less than 4% of such children having that experience in states with a fee ratio of 75% or more. About 9% of kids like this didn’t get care in the last year because the wait in the office was too long in states with fee ratios less than 50% versus only 4% of kids experiencing this issue in states with a fee ratio of 75% or more.

In other words, when more docs accept Medicaid, fewer kids experience issues with access. When Medicaid reimburses more, fewer kids experience issues with access.

None of this is terribly surprising. Nor is it hard to understand. But it provides a nice data point to bring up when people want to cut Medicaid or make it spend less. The reason it’s so cheap, relative to other types of insurance, is that it does often pay less. However, I’m often struck by how often people who complain about how Medicaid has access issues are also the same people who want to see us spend less on Medicaid. The way to improve access is to spend more. When Medicaid looks more like Medicare, kids have a much easier time.

Of course all this may be moot. The Medicaid fee raises weren’t a permanent part of the ACA. They will expire soon, unless action is taken by Congress.

Aaron

[Editor’s Note: For more insights on the research and data questions policymakers have about Medicaid, please see AcademyHealth’s recently released Listening Project report: Improving the Evidence Base for Medicaid Policymaking.]

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Placebos raise ethical quandaries, as highlighted by a PLOS ONE study published last summer. At their heart is the notion that placebos only work if patients are deceived as to what they really are (inert). However, another PLOS ONE study suggests that this may not be so.

To elicit views on physicians’ use of placebos, Felicity Bishop, Lizzi Aizlewood, and Alison Adams conducted eleven focus groups, collectively including 58 people residing in England (18 men, 40 women, 19-80 years old). Discussions centered on vignettes presented by the investigators in which placebos were variously prescribed to patients with either a serious or mild condition (terminal cancer or a cold) and with or without deception. The ensuing discussions raised the core ethical tension: should doctors tell the full truth about what placebos are when prescribing them (if at all), or is it OK for them to deceive patients in an attempt to maximize (positive) placebo effects?

This ethical tension rests on two beliefs: (1) To many, “placebo” means “ineffective.” And, (2) there is some benefit merely from thinking one is receiving an effective treatment, in the mere expectation of an effect. Therefore, should a physician disclose that she is prescribing a placebo to a patient holding these beliefs, they act to cancel each other out. One can’t think one is receiving an effective treatment if one is also told that one is receiving a “placebo,” synonymous with “ineffective.” (An exception arises if one disbelieves one’s physician, but that is probably rare among patients who actively seek treatment.)

The idea that the placebo effect can only be harnessed by physicians who deceive patients is an uncomfortable principle to endorse. Who wants to be deceived? On the other hand, there are circumstances in which employing the placebo effect is the best a physician can do to help a patient feel better (i.e., no other therapy would be more effective). Who doesn’t want to feel better?

Not surprisingly, people are torn between wanting to feel better (the consequentialist view) and wanting to preserve control over their care (respecting autonomy). Quotes from the focus groups highlight this tension:

Consequentialist:

“The point is do I get better? I don’t really care how it happens, to be honest.”

Respecting autonomy:

“I would be furious, I have to say, if I did go to the GP and wanted – needed medication and [...] then find afterwards that it had been a placebo, without my permission, I would want to sue, I would be so angry.”

A few situations dodge the consequentialist-autonomy dilemma. First, when placebos were viewed as ineffective, their use was judged unacceptable by focus group participants. Deception for snake oil and quackery is not OK. Second, some participants thought placebos were a less acceptable use of public and personal resources for minor conditions, like colds, that would resolve on their own. Third, offering placebos to children was viewed as more uniformly appropriate. It was acknowledged that parents do this all the time, with “magic kisses,” and the like. Finally, with informed consent, use of placebos in clinical trials was also felt to be appropriate.

Discussion also turned to the possibility of placebo prescribing without deception.

Some focus groups suggested that careful use of language might resolve the dilemma: if doctors are vague or tentative in how they describe placebos then they might be able to use them to elicit placebo effects without directly lying to patients. In other words, some participants suggested that careful wording (or ‘‘fudging’’ the truth) could be a way of avoiding ‘‘blatant’’ lies and thus rendering placebo-prescribing acceptable.

Could this, or even more straight-forward disclosure, ever work? A study by Ted Kaptchuk and colleagues suggest it’s possible. They conducted a three-week randomized controlled trial (RCT) comparing an open-label (no deception) placebo (N=31) to no-treatment controls (N=39) for patients with irritable bowel syndrome (IBS). The placebo nature of the “treatment” group was disclosed to patients by explaining that it was inactive (an inert substance) like a sugar pill. Further, patients were told that the placebo effect is powerful, that the body can respond to it, a positive attitude helps, and faithfully taking the placebo is critical.

Results after 21 days are summarized in the following figure. In brief, the investigators found statistically significant and clinically meaningful improvements in various measures of IBS symptoms in the open-label placebo group, relative to the no-treatment controls. (A separate study on depression also found encouraging but limited improvements from an open-label placebo.)

IBS placebo

What is unclear from this study is whether the placebo effect would have been even larger if it was closed-label (relying on deceit). However, the authors noted that their open-label placebo response was larger than typical closed-label placebo responses in other IBS studies.

Including use of medications for conditions for which they cannot help (e.g., antibiotics for viral infections), placebos are frequently prescribed. And prior work has found that patients, by and large, don’t mind, without much detail on how they think though the ethical dilemmas. The American Medical Association’s code of medical ethics advises that placebos be used only if a patient provides informed consent. This could put too much emphasis on autonomy if it completely ruins the placebo effect, under the presumption it relies on deceit.

But at least two studies, noted above, suggest we can have our autonomy and our placebo effect too. This is not enough work to convince me that’s generally true, but it’s an interesting possibility.

Austin B. Frakt, PhD, is a health economist with the Department of Veterans Affairs and an associate professor at Boston University’s School of Medicine and School of Public Health. He blogs about health economics and policy at The Incidental Economist and tweets at @afrakt. The views expressed in this post are that of the author and do not necessarily reflect the position of the Department of Veterans Affairs or Boston University.

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NHPC Day 1: At a Glance

by Lindsey Horan on February 9, 2015

The National Health Policy Conference, this year celebrating its 15th anniversary, covers the issues that will define the policy and practice agenda in 2015. Monday’s dynamic sessions revealed the intricacies and complexities of what Congress and the administration face in the year to come, but left panelists and attendees feeling optimistic about the role health services research and health services researchers could play in the policy debate.

Here, you will find a quick recap of some of the day’s sessions from AcademyHealth staff:

Administration’s Plenary on Health Policy Priorities: “The Reward is Worth the Work”

William Corr, Deputy Secretary of the United States Department of Health and Human Services, kicked off the 2015 National Health Policy Conference (NHPC), noting that it’s a historic time to work in the health care field. The transformation, he said, is due in large part to health services researchers, who are helping to create a foundation of research and knowledge for the administration to build upon and pave the path for advancement. Deputy Secretary Corr spent much of his session highlighting the progress made by the administration and states to move millions of Americans into health care coverage, while also noting there is still more work to be done:

“For the sake of our health, our wallets and our economy, we need to go further…We have a responsibility to lead.” He told attendees that the United States isn’t going to be able to fix the health care system unless we make it better and smarter, something in which individuals of all political parties and ideologies have a stake [and something we at AcademyHealth would say requires the contributions of health services research]. “We all have a stake in more access to quality, affordable health care,” said Corr, adding that there was a deep commitment to building on the current health care momentum and writing the next chapter.

Plenary: State Health Policy

With the second open enrollment period closing on February 16, states continue to experiment with new innovations to expand coverage and improve access, quality and cost. This session, moderated by Dan Crippen of the National Governors Association featured Rita Landgraf, Delaware Department of Health and Social Services; Nico Gomez, Oklahoma Health Care Authority; and Brian Neale, Office of the Governor, Indiana.

Speakers discussed varying initiatives to address state-specific challenges and expand coverage in Delaware, Oklahoma, and Indiana, and they agreed that there is a great opportunity for states to use innovations to improve coverage and access. Speakers also agreed on the need to bring all of the players to the table to discuss coverage, payment, and care delivery issues and to create a lean operation and avoid duplication of effort. Nico Gomez stated “…we need to use opportunities to bring everyone to the table to make changes.” 

Another important goal of state strategy that speakers discussed is empowering consumers. Landgraf giving consumers an ownership in health care so that they understand the value of health insurance and access. 

This session highlighted the important role that states have in creating innovations to address changes and expansions brought on by the Affordable Care Act and the idea that states should work together to share ideas, challenges, and solutions. Brian Neale summarized the approach by saying, “When states have the opportunity to work with one another to create best practices, everyone wins.” 

By leveraging multiple state resources, population health, the workforce, payers, employers, technology and more, participants believe that states can achieve success in expanding coverage and achieving the triple aim. Landgraf encouraged attendees to “look innovatively and leverage across the spectrum.”

Late Breaking Session: U.S. Health System Preparedness: Lessons from Ebola & Other Threats

Dr. Nicole Lurie, the Assistant Secretary of Preparedness at the U.S. Department of Health and Human Services moderated a panel on the recent Ebola outbreak and the state of the nation’s public health infrastructure. Dr. Lurie commented on the interconnectedness of the world and the crucial dependence on the efficiency and efficacy of the public health and health care system in order to combat public health threats. 

The recent outbreak exposed healthcare gaps in preparedness procedures and day-to-day infection control processes and begs the question, “what are the roles and responsibilities of the public health and health care system in confronting threats?” Dr. Michael Stoto of Georgetown University compared the Ebola response in New York and Dallas. He asserted that, while systemic breakdowns occurred in Dallas, New York City prepared its institutions, and was able to effectively treat an Ebola case and quarantine individuals who were exposed. 

Dr. Bryce Gartland, Emory University, provided remarks on the importance of adequate funding in order to sustain an appropriate state of readiness Additionally, the importance of communicating risk appropriately is key to the success of systemic response. 

Dr. Jeff Levi, Trust for America’s Health, tied the perspectives together by illustrating that policymakers ramp up resources after adverse events, which eventually dwindle, weakening the necessary infrastructure— including the public health workforce; response training and resources; and the ability of the healthcare system to treat. 

The ACA Punch List: Top 5 Things that Congress Needs to Fix in the ACA

The sentiment coming out of this Monday session is that the Affordable Care Act (ACA) is complicated—and panelists may argue even that is an understatement. Despite varying political ideologies and affiliations, panelists Joseph Antos, Sabrina Corlette, Jon Kingsdale, and Judith Solomon did have a common thread: a deep understanding of the health care system and how the ACA can affect it, noted moderator Timothy Jost.

Although there was some overlap between some panelists—one overlay being the dire need for the legislation’s simplification—viewpoints varied on which components were most important and in need of fixing. These ranged from eliminating surcharge rates based on tobacco use and providing plans with greater health incentives to cover more primary and chronic disease management pre-deductible (Sabrina Corlette, who focused solely on private market reform) to fixing the “family affordability glitch” (Judith Solomon) to computing different tax credits and eliminating extra plans “that serve to confuse” (Jon Kingsdale) to fixing the subsidies and eliminating the mandates (Joe Antos). Ultimately, Jost said, “Repealing the ACA is no more possible than removing the interstate highway system;” at this point, the question is how to amend it, and panelists gave members of  the audience much to think about in that respect. 

Lunch Plenary: Separating the Buzz from the Boon in Population Health

Elizabeth Bradley of Yale University and co-author of The American Health Care Paradox kicked off the luncheon plenary with a discussion on health care spending in the United States as compared to Scandinavian countries, and provided recommendations on what we can do to address the paradox. 

Bradley compared the ratio of health care spending to social services spending in the United States and in the OECD countries: from 2000-2009, for every one dollar spent on health care, the United States spends about 90 cents. For every one dollar spent on health care, OECD countries spend two dollars on social services. 

Countries with higher ratios of social to health spending have statistically better health outcomes. The difference, she suggested, can be attributed to history: in the United States, health care and social service sectors grew up from independently from one another and where as health care grew into a marketable commodity, social services were conceived of being “for the poor.” In Europe, the two sectors were knit together from the beginning.

To address this paradox, Dr. Bradley stressed the importance of debunking the popular American myth that health equals health care. By driving a culture shift on what drives health, separating health from health care, and incentivizing collaboration, we can begin to unravel the paradox of the U.S. health care system.

She highlighted the success of small, individual, champion-led programs, which led to improved outcomes for their populations and encouraged the mobilization of collaboration for health nationally. In addition, she called for common metrics for health care and social providers to measure public spending in order to report on results. 

Following her presentation, Dr. Bradley participated in a panel discussion with Chris Koller, Milbank Memorial Fund and Alan Weil, Health Affairs. Koller emphasized the importance of primary care in improving population health and bridging the gap between health and social services. Weil emphasized the need for new tools and pathways to build capacity for health care organizations to do community-based, population health work. 

Expanding the “Ownership” of the Social Determinants of Health

This session discussed the evolving nature of partnerships and new perspectives on the return on investment (ROI) for non-health sector investments in improving the social determinants of health, and the trans-disciplinary research required to continue to build the evidence base for action.

Dr. Ana Diez Roux, Drexel University, presented rationale for building the evidence base in order to understand the implications of social determinants of health. Dr. Diez Roux urged the audience to consider what place-based factors explain why individual characteristics related to health are spatially patterned.

Building on theme of “place matters,” Amy Gillman, Local Initiatives Support Corporation, presented the community development movementdriving investments to low-income communities to improve the quality of life for all residents. For example, in the Eastern North neighborhood of Philadelphia, an investment in several local programs e.g. a credit union, lead to a 12% reduction in poverty.

Dr. Eduardo Sanchez, American Heart Association, discussed the “upstream promotion of health” to improve the cardiovascular health of individuals, with critical attention to how an individual’s location affects their ability to establish heart-healthy behaviors.  Dr. Sanchez elucidated that low education level and racial segregation contribute as equally, if not more, as tobacco use to poor heart health.

Dr. Alonzo Plough, Robert Wood Johnson Foundation, moderated the session and lead with a call to action to all stakeholders to enable every member of society to make healthy choices through greater resource equity, in order to build a culture of health.  

HSR Impact Award Presentation

Day one of the NHPC ended with the presentation of the HSR Impact Award, an annual award presented to health services research that has made a clear impact on health policy and practice. This year’s award was presented to Jonathan P. Weiner, Dr. P.H., of The Johns Hopkins Bloomberg School of Public Health by Helen Burstin, chief scientific officer of The National Quality Forum, on behalf of his and his colleagues’ groundbreaking work on The Johns Hopkins ACG Case-Mix System.

This model has gained international acceptance as a standardized risk adjustment tool for health services and outcomes research. AcademyHealth congratulates Dr. Weiner and his colleagues on this well-deserved achievement.

Private Sector Health Care Transformation Plenary

Today’s final plenary examined how exactly private-sector payers, provider systems, and recent or new entrants into health care are reshaping the way care is delivered and financed.

Jeffrey Kang from Walgreens Co. discussed how his organization is responding to consumer needs through providing convenience, simplicity, and affordability. According to Kang, providing these characteristics lead to both a simple transactional relationship with a consumer and engagement in other health care channels such as digital health and chronic condition care services.

Innovative technology and technological assistance for both providers and consumers was a reoccurring theme during the plenary. David Notari of Innovation Health stated the importance of providing consumers with the tools necessary to compare prices and make firm decisions in the health care market place, an important factor in achieving better health, higher quality and lower costs. Aparna Higgins, AHIP, further built on this theme by explaining that giving providers data on patients is critical to helping them better manage their practices as well as exchanging health information through access to online portals.

This session was moderated by Susan Dentzer from the Robert Wood Johnson Foundation. 

Adjunct Meetings and Day Two 

This evening’s adjunct meetings include:

  • Student Networking Event
    6:30-8:30 p.m. | President’s Sports Bar & Grill | Renaissance Washington, D.C. Downtown Hotel
  • Disparities Interest Group Networking Happy Hour
    7:00-8:30 p.m. | Penn Quarter | Renaissance Washington, D.C. Downtown Hotel

Tomorrow morning’s adjunct meetings include:

We will update this post with links to presentations as they become available. In the meantime, we hope you enjoy your second day of the NHPC. Be sure to follow us and add to the conversation on Twitter @AcademyHealth, #nhpc15.

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