research Archives - Lown Institute https://lowninstitute.org/tag/research/ Thu, 06 Apr 2023 14:44:28 +0000 en-US hourly 1 https://wordpress.org/?v=6.3.1 https://lowninstitute.org/wp-content/uploads/2019/07/lown-icon-140x140.jpg research Archives - Lown Institute https://lowninstitute.org/tag/research/ 32 32 What have we learned after ten years of “Choosing Wisely”? https://lowninstitute.org/what-have-we-learned-after-ten-years-of-choosing-wisely/?utm_source=rss&utm_medium=rss&utm_campaign=what-have-we-learned-after-ten-years-of-choosing-wisely Mon, 18 Apr 2022 15:10:33 +0000 https://lowninstitute.org/?p=10044 Over the past decade, what has the Choosing Wisely program taught us about strategies and obstacles to reducing low-value care? Vikas Saini discusses on the NEJM podcast.

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The Choosing Wisely program was started in 2012 by the American Board of Internal Medicine Foundation to promote conversations between clinicians and patients on avoiding unnecessary tests, treatments, and procedures. Medical specialty organizations asked their members to identify commonly used low-value tests or procedures and created lists of services to avoid along with patient resources.

Lown Institute president Vikas Saini reflected on what we’ve learned ten years after the start of Choosing Wisely, in an audio interview in the New England Journal of Medicine. The interview accompanied a viewpoint piece on the same topic by Brigham and Women’s primary care doctor Elizabeth Rourke.

The impact of Choosing Wisely

Over the past decade, Choosing Wisely has expanded to include more than 80 specialty societies from 25 countries. But what has the impact of the program been on actually reducing low-value care?

Choosing Wisely started out of concern about the quality and efficiency of our health care system, and from the desire for the medical community to start a conversation on overuse. The program was a step for medical specialties to “own” their role in low-value care, said Saini. To that end, Choosing Wisely’s growth shows increased interest and awareness within medical specialties about tests and procedures to avoid.

“There’s no question that Choosing Wisely was a really important icebreaker [on overuse]”

Dr. Vikas Saini, NEJM

When it comes to reducing actual rates of overuse, the impact of Choosing Wisely is more murky. Studies measuring usage of tests and procedures identified as low-value through Choosing Wisely found little change in the years since the program began.

One study published last year in JAMA found that from 2014 – 2018, the proportion of Medicare beneficiaries receiving any low-value service declined — but only by 2.7%. In 2018, about one third of Medicare beneficiaries were still receiving at least one low-value service. While low-value preventive screenings like annual cardiac screenings and Vitamin D screenings decreased, prescriptions of opioids for back pain increased, as did antibiotics for colds.

While there hasn’t been a substantial systemic change in overuse rates from Choosing Wisely, researchers have identified promising interventions on a hospital level that were driven by this program. A 2021 systematic review of overuse interventions found that programs such as clinical decision support, EHR alerts to warn about low-value services, and updating clinical practice guidelines, were much more impactful than just disseminating Choosing Wisely guidelines alone.

Why is overuse slow to change?

In NEJM, Dr. Elizabeth Rourke argued that the elements that made Choosing Wisely so popular are those that have made it ineffectual. The program was designed to avoid the perception of healthcare “rationing” in the era of Obamacare, so there are no teeth to the recommendations. Choosing Wisely allows specialty societies flexibility in choosing what goes on these lists; as a result, they tend to include imaging and testing that have less of an impact on their specialty’s bottom line.

Saini agreed that taking a professional-led approach had inherent benefits and drawbacks for Choosing Wisely. For example, the criteria used to create the recommendation lists varied widely across specialties, which let some specialties off the hook for avoiding talking about the most common or high-margin services. In fact, this frustrating with some of the recommendations led the Right Care Alliance to develop their own specialty “Top Ten Dos and Don’ts” lists, some of which have been published in medical journals.

“The challenge is that overuse is a systemic problem. It needs systemic solutions.”

Vikas Saini, NEJM

Despite some of the deficits of Choosing Wisely, the larger issue is that overuse is so deeply rooted, that it will take much more than a physician-led awareness campaign to create sustained and meaningful change. “Using lists is helpful to a point, but you see the numbers on those lists are in the thousands,” said Saini. That means that helpful interventions in one area of low-value care just seem like islands in an ocean of overuse.

A cultural shift

If programs like Choosing Wisely aren’t enough to get us to real change, then what is?

Part of the problem is economic; in our fee-for-service system, clinicians are rewarded for doing more, even when it doesn’t help patients. “Economic factors drive rapid adoption of low-value care and impede ‘dis-adoption’ of procedures that have shown not to be particularly effective,” said Saini. The movement toward value-based care, while slow-moving, is a promising change to realigning incentives toward health rather than volume.

There also have to be economic incentives for patients and communities as well as doctors. “If we reduce low-value care, the money doesn’t go back to communities to invest in health,” Saini pointed out. “If you don’t have parties who can clearly see how they gain, they’re not motivated.”

Cultural factors — like the idea that “always doing something is better than doing nothing” — also play a role in driving overuse. These assumptions are hard to change, especially because doctors have so little time with patients. Without a trusting relationship, it’s much harder to explain why a test or procedure might be wrong for that patient.

Evaluating interventions for low-value care and scaling them up, changing how we pay for care, and giving clinicians and patients time to have these important conversations should all be top of mind as we rethink the best way to “choose wisely” in the future.

Listen to the full NEJM audio interview with Dr. Vikas Saini!

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Low-value care for back pain is common, but may be declining https://lowninstitute.org/low-value-care-for-back-pain-is-common-but-may-be-declining/?utm_source=rss&utm_medium=rss&utm_campaign=low-value-care-for-back-pain-is-common-but-may-be-declining Sun, 20 Feb 2022 21:00:52 +0000 https://lowninstitute.org/?p=9897 Low back pain is one of the most common health problems in the world and one of the most common causes of overuse -- but there is some good news.

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If you’ve ever experienced back pain (and chances are, you have), you know how frustrating it can be to have few treatment options that help. Low back pain is one of the most common health problems in the world, impacting 577 million people (that’s 7.8% of the world’s population). Back pain is also the leading global cause of disability, in an unfortunate trend that has only grown over the past few decades.

In the face of discomfort and disability, it’s tempting for doctors and patients to try tests and procedures that aren’t proven to work, to feel as though they are taking action. Unfortunately, low-back pain can lead to ineffective and sometimes harmful low-value tests and procedures, like diagnostic imaging, opioids, spinal injections, and surgery.

A 2020 review on low-value care for back pain in The Lancet laid out some of the more shocking statistics on this phenomenon:

  • Nearly 60% of outpatient lumbar spine MRIs may be inappropriate, costing the US $300 million per year.
  • The US spends $12.8 billion a year on spinal fusion surgery (making it the most costly surgical procedure), even though there is little evidence to show that it improves back pain.
  • Low-value care for back pain is common in low- and middle-income countries as well as wealthier countries; in 2020, 77% of people in Central Ethiopia seeking care for low-back pain were given medication injections.

However, there is some promising evidence that shows the tide may be turning on low-value care for back pain. In a recent article in JAMA Network Open, researchers at the Enterprise Health Services Research and Anthem insurance company found that commercially-insured patients with back pain were less likely to use inpatient services, low-value surgery, opioids, and imaging in 2019 compared to in 2011.

The greatest absolute reduction in use was for imaging, which decreased from 74% to 60% of patients. The greatest relative reduction in use was for surgery, which decreased from 4.5% to 3.3% of patients. However, the use of low-value epidural injections for back pain did not change.

In The Lancet, the authors of the 2020 review call for ten policy changes to reduce low-value care for back pain. Here are a few of my favorite recommendations:

  • Insurers and other groups that pay for health care should stop covering ineffective and harmful back pain treatments.
  • New tests and treatments for low-back pain should not be approved or marketed until they are proven safe, effective, and cost-effective.
  • The medical and public health community should educate doctors and patients about the causes of low-back pain, how to manage symptoms, and disabuse the notion of an existing “cure” for back pain.
  • The World Health Organization should make global disability from back pain a priority in research and public policy.

If implemented, these would certainly help continue the encouraging trend shown in the Enterprise study.

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Which health systems are doing the most to reduce overuse? https://lowninstitute.org/which-health-systems-are-doing-the-most-to-reduce-overuse/?utm_source=rss&utm_medium=rss&utm_campaign=which-health-systems-are-doing-the-most-to-reduce-overuse Mon, 17 Jan 2022 23:23:56 +0000 https://lowninstitute.org/?p=9690 New research from Johns Hopkins evaluates overuse at more than 600 health systems. How do their results compare to those of the Lown Hospitals Index?

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Overuse— also known as low-value care or unnecessary care— is widespread in American health care, and poses a significant threat to patient safety and financial sustainability. However, not all hospitals or health systems give patients unnecessary tests and services at equal rates. Identifying the providers who effectively avoid overuse, as well as those who are overuse outliers, can show which policies are working well to reduce low-value care, and point to where more targeted interventions are necessary.

The Lown Hospitals Index was the first to evaluate more than 3,000 hospitals and 300 hospital systems on how well they avoid 12 common low-value services for Medicare patients. Researchers have since conducted analyses of low-value care throughout the system, including outpatient clinics, skilled nursing facilities, and home health agencies.

In a new study in JAMA Health Forum, Dr. Jodi Segal at the Johns Hopkins School of Public Health and colleagues evaluate overuse at 676 health systems using an Overuse Index consisting of 17 low-value services. These services, which include MRIs for patients with mild brain injuries, spinal fusions for back pain and pap smears for women over age 65, are indicators of systemic overuse that have been validated in both Medicare and commercially insured populations.

Dr. Segal and colleagues found that health systems with higher overall rates of overuse had more beds and fewer primary care physicians; they were also more likely to be for-profit systems and less likely to be associated with a major teaching hospital.

More physician groups within a system was also associated with overuse, which means that further hospital consolidation going unchecked could lead to more low-value care.

“As hospitals restructure themselves into larger and larger systems, senior leadership of hospitals will have to own this problem, said Dr. Vikas Saini, in Modern Healthcare.

Although the JHU study and the Lown Index measure overuse of different health services, some of the patterns in these two analyses match up. According to the Lown Index, none of the top hospital systems for avoiding overuse are for-profit systems, although some on the bottom are (see tables below). The Lown Index also found that major teaching hospitals had better rankings on avoiding overuse compared to nonteaching hospitals.

Best health systems for avoiding overuse, 2021

NameStateNumber of hospitals in systemLIHI overuse rankLIHI overuse grade
UMass Memorial Health Care, Inc.MA2-31A
Samaritan Health ServicesOR4-92A
St. Luke’s Health SystemID4-93A
MaineHealthME, NH4-94A
Northern Light HealthME4-95A
Virginia Mason Health SystemWA2-36A
HealthPartnersWI, MN4-97A
Central Maine HealthcareME2-38A
UCHealthCO4-99A
Beth Israel Lahey HealthMA4-910A
Vanderbilt HealthTN2-311A
North Memorial Health CareMN2-312A
Centra Health, Inc.VA2-313A
Carle FoundationIL2-314A
Legacy HealthWA, OR4-915A
UC HealthOH2-316A
Nuvance HealthCT2-317A
Lifespan CorporationRI2-318A
Essentia HealthWI, MN, ND, ID10-1919A
Mayo ClinicFL, WI, MN, IA, AZ20-3920A
Top 20 hospital systems for avoiding overuse on the Lown Hospitals Index. All of these are nonprofit systems.

Worst health systems for avoiding overuse, 2021

NameStateNumber of hospitals in systemOwnership typeLIHI overuse rankLIHI overuse grade
Central Florida HealthFL2-3Nonprofit311D
Methodist Health SystemTX2-3Nonprofit310D
Houston Healthcare SystemGA2-3Nonprofit309D
Baptist HealthAL2-3Nonprofit308D
Houston MethodistTX4-9Nonprofit307D
Curae HealthAL, MS2-3Nonprofit306D
Baptist Health South FloridaFL4-9Nonprofit305D
Rush Health SystemsMS2-3Nonprofit304D
McLeod HealthSC4-9Nonprofit303D
Regional Medical CenterAL2-3Nonprofit302D
Memorial Healthcare SystemFL2-3Nonprofit301D
Mary Washington HealthcareVA2-3Nonprofit300D
Union General Hospital, Inc.GA2-3Nonprofit299D
Greater Hudson Valley Health SystemNY2-3Nonprofit298D
Physicians for Healthy HospitalsCA2-3For-profit297D
LifeBridge HealthMD2-3Nonprofit296D
Hackensack Meridian HealthNJ4-9Nonprofit295D
Allegiance Health ManagementAR, LA4-9For-profit294D
CarePoint HealthNJ2-3For-profit293D
Broward HealthFL2-3Nonprofit292D
Bottom 20 hospital systems for avoiding overuse on the Lown Hospitals Index.

The JHU researchers found that St. Dominic’s health system in Jackson, MS, had the worst score of any system on their overuse index. On the Lown Index, St. Dominic-Jackson Memorial Hospital, which is part of that system, also scored poorly on avoiding overuse.

In Modern Healthcare, a St. Dominic’s official said that they are “committed to exploring this study and taking any necessary actions to ensure our patients, community and region receive the most exceptional, safe and effective care.” If research like the JHU study and the Lown Index can prompt system leaders to reduce unnecessary care, that’s a big step in the right direction.

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Why can’t we reproduce so many scientific findings? https://lowninstitute.org/why-cant-we-reproduce-so-many-scientific-findings/?utm_source=rss&utm_medium=rss&utm_campaign=why-cant-we-reproduce-so-many-scientific-findings Sat, 11 Dec 2021 22:05:32 +0000 https://lowninstitute.org/?p=9621 Being able to do an experiment over again and confirm the results is actually a crucial aspect of science, called reproducibility. Unfortunately, a shockingly large proportion of cancer biology studies we do may not be reproducible, a new study shows.

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Why would someone do the same experiment more than once, if they already found the answer? Isn’t that the very definition of insanity? Being able to do an experiment over again and confirm the results is actually a crucial aspect of science, called reproducibility. If scientists find a certain result from an experiment, but no one else is able to replicate it, that’s a red flag. It indicates that the first scientists could have made a mistake or that the original study design wasn’t sound.

“Reproducibility is truth. Without reproducibility, we cannot make significant progress in human health.”

Dr. Bibiana Bielekova, Issues in Science and Medicine

Unfortunately, a shockingly large proportion of the science we do in the US may not be reproducible. In a landmark study in 2012, cancer researchers Glenn Begley and Lee Ellis tried to replicate 53 studies of cancer biology, and found that they could only get the same results for six of them. Another 2015 study to reproduce 100 psychology experiments found a similar result for fewer than half of them.

Barriers to reproducibility

What are some of the barriers that scientists face when trying to reproduce experiments, and how can we overcome these barriers? Researchers at the Center for Open Science undertook an incredibly ambitious task to find out, as part of their Reproducibility Project. They spent eight years trying to replicate 193 experiments from 53 papers on cancer biology that were published between 2010 and 2012. Even after all that time, they were only able to replicate 158 effects from 23 papers.

Here’s why it was so hard. As the researchers explain in an accompanying paper, only four experiments (out of 193!) had publicly-available data to compute the effect sizes and other calculations. Most experiments required scientists to ask original authors to share a key reagent (a substance or mixture used to create a chemical reaction). And none of the experiments were described in enough detail in their original papers so that other scientists could repeat the experiments. This means the researchers had to go back to all of the original authors to ask for their help — but the authors for one-third of the experiments weren’t helpful or never responded.  

When they could replicate the experiments, the researchers found that the results were less impressive than the original findings; average effect sizes of reproduced studies were 85% smaller than in the original findings. Most of the studies that originally had negative findings were successfully replicated, while fewer than half of the studies that originally had positive results were able to be replicated.

Just because a result isn’t reproducible doesn’t mean it’s necessarily wrong. There can be differences in results can be due to changes in protocols (how the study was conducted), which statistical tests were done on results, and the skill of scientists doing these projects. However, the study authors noted times in which even the original labs could not figure out how to redo their experiments, either because the scientists had left or the protocols hadn’t been recorded. That’s not an encouraging sign for reproducibility.  

Moving forward

How do we address the reproducibility crisis? Researchers point to the need for more incentives to encourage scientists to reproduce others’ findings. In the current science landscape, researchers are rewarded for publishing new research, not validating the research of others. If you were a funder, would you rather spend money on an experiment to uncover a new potential cancer cure, or to redo a previous cancer biology experiment? The second one just doesn’t sound as exciting.

“[Replication] won’t make a career,” said, Tim Errington, a cancer biologist at the Center for Open Science and lead author of the recent study, in STAT News. “It’s not the flashy science that people want, not a positive result, because they’re redoing something. So we need to figure out how to balance that as a culture.”

There are a few bright spots in the research world when it comes to changing this culture. A new consortium of funders called “Ensuring Value in Research” promotes research with pre-validated methods and open-access publication, which could help encourage more sound and replicable science. There are other small fixes that would make it easier for researchers to replicate experiments, like journals eliminating word count limits in methods sections or encouraging researchers to submit supplemental material with their full study protocol.

The Center for Open Science has developed another approach called Registered Reports, in which scientists submit their study methods to peer review before they conduct the experiment. This helps reduce the bias that can occur when researchers feel pressure to adjust their methods or statistical tests to get a certain result. And it saves time because researchers don’t have to redo experiments if their methods weren’t up to par the first time.

And technology may be a promising way to reward sound science and identify the most fruitful paths for research. Currently, researcher that have the most-cited or most popular studies in “high-impact” journals get rewarded — even though the methods may not be reproducible. In a recent piece in Issues in Science and Medicine, former Lown Institute VP Shannon Brownlee and National Institutes of Health researcher Bibiana Bielekova propose using machine learning algorithms to identify articles by their rigor, reproducibility, and societal impact, rather than their popularity or number of citations. This could incentivize better research methods while illuminating future research paths that are most likely to bear fruit.

Reproducibility is a concerning issue in science, but these new initiatives also give us something to be optimistic about. Now go out there, and do the same thing over again!

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Researchers speak out on racism and medical publishing https://lowninstitute.org/researchers-speak-out-on-racism-and-medical-publishing/?utm_source=rss&utm_medium=rss&utm_campaign=researchers-speak-out-on-racism-and-medical-publishing Sat, 10 Apr 2021 14:50:00 +0000 https://lowninstitute.org/?p=8020 After an editor at a major medical journal dismissed the idea of structural racism, researchers say his views are symptomatic of larger problems in health research.

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In late February 2021, the Journal of the American Medical Association (JAMA) published a podcast called “Structural Racism for Doctors — What Is It?” The podcast was meant to be an educational tool, but it ended up being a teachable moment for much different reasons than intended.

Structural racism is a key determinant of health, impacting health through residential segregation, health care access, incarceration, police violence, pollution, maternal mortality, psychological stress, and many other avenues. Rather than delve into these connections, the host, former JAMA deputy editor Dr. Ed Livingston, questioned whether racism still exists, suggested that we stop using the word racism because it offends white people, and said we should focus not on racism but on socioeconomic status to fix racial inequities.

“The use of race for any sort of transactional activity was made patently illegal by the civil rights legislation passed in the 1960s,” said Livingston, who is white, on the podcast. “Given that racism is illegal, how can it be so embedded in society that it’s considered structural?” The other podcast participant, head of NYC’s public hospital system and JAMA Internal Medicine editor Dr. Mitchell Katz, tried to explain structural racism to Livingston, but did not push back very hard against the host’s assertions.

Many listeners were shocked to hear an editor of a major medical journal display such lack of awareness and readily dismiss the impacts of racism. Others, especially people of color in medical research, were upset but not surprised, because they’ve seen how publishers treat structural racism as a research topic. The podcast and subsequent fallout has inspired researchers to speak out on their experiences with medical journals and demand accountability. These researchers assert that the podcast is a symptom of the much larger problem of prestigious medical journals dismissing or downplaying issues of race in health research.

Afraid of the word racism

On the JAMA podcast, Livingston bristled at the use of the word racism. “Personally, I think taking racism out of the conversation would help,” he said. “Many people like myself are offended by the implication that we are somehow racist.”

The tendency not to use the word racism when talking about the causes of racial inequities is a common theme in medical publishing. In a recent op-ed in the Washington Post, Dr. Ron Wyatt, co-chair of the Institute for Healthcare Improvement’s equity advisory group and faculty member of the IHI Pursuing Equity Initiative, shared that he had submitted a paper to JAMA with the title, “Racism in Health and Healthcare: Challenges and Opportunities.” The editor-in-chief told Wyatt and his co-author that he would not publish the title as-is, because using the word racism would lose them readers.

“Solving systemic racism in public health must start with naming it. We must publish the word. We must say the word.”

Dr. Ron Wyatt

In another case, a major healthcare trade magazine changed “racism” in the title of Wyatt’s accepted article to “intolerance.” This pattern is not new; in fact, from 2002 to 2015, there were no articles in JAMA or the New England Journal of Medicine that used the word racism in their title or abstract. But it has continued in recent years, despite major players in the medical field promising to address racism in medicine. “I still sometimes feel that survival mechanism kick in to compromise and veil the truth that structural and systemic racism is a root cause of preventable harm and death across U.S. health care,” wrote Wyatt.

Race as a research topic

Researchers are also concerned that journals are not taking enough care to ensure that use of race in research is done consistently and rigorously. In a piece in Health Affairs last summer, Dr. Rhea Boyd, pediatrician and director of equity and justice for the California Children’s Trust, and colleagues discussed some of the pressing issues with race and research. Boyd and colleagues write, “There is no uniform practice regarding the use of race as a study variable and little to no expectation that authors examine racism as a cause of residual health inequities among racial groups.” The lack of strict standards makes it more likely that researchers attribute racial differences to genetic or biological factors when racism is really the underlying cause.

Others have noted the way in which journals treat race in medicine as different from other medical specialties, often not requiring the same level of expertise. The JAMA podcast itself is a great example of this. It’s hard to think of other topics that a leading medical journal would create a podcast about with no actual experts in the field on the episode.

“This podcast was for CME credit. If they were teaching about any other subject, like glaucoma, they would have had experts, and neither of these men are experts.”

Dr. Clarence C. Gravlee

“This podcast was for CME credit. If they were teaching about any other subject, like glaucoma, they would have had experts, and neither of these men are experts,” said Dr. Clarence C. Gravlee, associate professor in the department of anthropology at the University of Florida, in Stat News. Gravlee has made the transcript of the episode available as a lesson for his classes on medical racism. His recent essay, “How Whiteness Works: JAMA and the Refusals of White Supremacy,” uses the podcast as a real-world example to show how white people often refuse to understand and deny racism.

The CDC takes a stand

When research on racism is stifled or whitewashed, researchers and the broader health care community are harmed. Recognizing the impact of racism on health, creating standards for research, and investing in this research is necessary to learn more about how to dismantle racist systems that cause poor health.

There already may be some progress on this front– besides the growing movement to hold medical journals accountable, the Centers for Disease Control and Prevention (CDC) recently declared racism a public health threat, and launched a new agency-wide initiative called Racism and Health, to refocus the CDC’s public health efforts on researching and taking action on this issue. The declaration of racism as a public health crisis is long overdue, but it points to an encouraging trend of health care institutions finally listening to researchers like Drs. Camara Jones, Nancy Krieger, Mary Bassett, David Williams, and many others who have been shining a light on the problem for decades.

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Categorizing and measuring harm from medical treatments https://lowninstitute.org/rethinking-what-counts-as-harm-from-medical-treatments/?utm_source=rss&utm_medium=rss&utm_campaign=rethinking-what-counts-as-harm-from-medical-treatments Mon, 01 Feb 2021 19:14:11 +0000 https://lowninstitute.org/?p=7087 Truly informed decision making cannot happen without a good understanding of both the benefits and the harms of medical treatments. In a recent paper, researchers break new ground by identifying different types of harms from medical care that all clinicians and researchers should be aware of.

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When patients need to decide if a medical intervention is right for them, they need clear information about the potential benefits and harms of the treatment. Unfortunately, we have a lot less information about one side of the equation than the other, because rigorous research on the potential harms of medical care is limited. This makes it harder for both clinicians and patients to make informed decisions about treatments, and often causes them to overestimate the benefits and underestimate the harms of medical care.

In August 2019, 32 experts including researchers, clinicians (primary care doctors and specialists), patients, educators, and journalists, met at the Lown Institute to discuss how we move forward in research on overuse harms. The event was a jumping-off point for several health services researchers led by Dr. Deborah Korenstein, chief of general internal medicine at Memorial Sloan Kettering Cancer Center, to develop recommendations for evaluating the harms of health care services. Their paper was recently published in the Journal of General Internal Medicine, and is an important resource for anyone conducting medical research, as well as journals, regulators, and clinicians.

In this paper, the authors list seven categories of harms to consider when evaluating any medical service, as well as data sources and measurement tools that can be used to gather evidence for each type of harm. Here is a brief overview of the categories:

Physical impairment

Physical impairments resulting from medical treatment–such as pain, disease, death–are the most well-known type of harms. These are often reported in clinical outcomes by clinicians and patients. The authors clarify that researchers should not only report the harms directly resulting from a test or treatment, but also include physical harms from subsequent cascade events (follow-up tests and procedures). These are more difficult to measure, but are incredibly important because clinicians may see certain tests as “harmless” where in reality there are significant consequences from cascade events down the line.

Psychological distress

Less well-known than physical harms are the potential psychological harms that people may experience from medical treatments. These include negative emotions, mood symptoms, or more serious mental health conditions such as depression, anxiety, or PTSD. For example, getting a false positive from a screening test can lead to changes in self-perceptions and anxiety, which can be long-lasting. Other procedures such as hysterectomy can impact ones hormones and mood significantly. These harms are more difficult to find because they may not always be reported, but electronic health records, claims data, and disability claims may have this information.

Social disruption

Social disruption refers to interference with relationships, parenting, and social roles that can happen when people are isolated, suffer physical harm, or have to remove themselves from their social circles because of medical treatment. For example, many women have written about the negative impacts of vaginal mesh complications on their ability to connect intimately with their partner. These harms are not usually measured in clinical trials, but demographic and survey data can be helpful to track changes in life events that could be connected to medical treatments.

Disruption in connection to health care

Being exposed to the unnecessarily harm can erode the trust that patients have in their clinicians, and in the health system as a whole. This impact on the clinician-patient relationship can lead patients to avoid seeking help for health care later when they need it. This type of harm is difficult to measure, but may appear when looking at administrative claims, if someone stopped going to the doctor after a harmful episode.

Labeling

When someone receives a diagnosis, this can impact their sense of self, and could also impact their future interactions with the healthcare system. Not only can certain diagnoses like cancer increase anxiety, but other diagnoses may have stigma attached, which impacts how other healthcare providers view patients, and how patients view themselves. For example, doctors have warned that giving a diagnosis of polycystic ovary syndrome for mild cases may be doing more harm than good, because it creates anxiety about body weight and future fertility but doesn’t really change the course of medical treatment. Patient surveys or focus groups may be useful in capturing the effects of labeling from medical treatment.

Financial impact

In the US, patients bear a substantial burden of paying for health care. While most people want to do everything they can for their health, the financial cost of care can be extremely disruptive, throwing families into debt or even bankruptcy. While a single imaging test may not be so pricey, cascade events and potential complications can cost patients tens of thousands of dollars. Including data on out-of-pocket costs, bankruptcy, and foreclosure can help illuminate potential financial harms of treatment.

Treatment burden

Having a medical procedure or treatment can seem like a full-time job. It takes a lot of time to go to doctors’ visits, getting the proper medications, dealing with insurance, and taking needed rest. For patients with families and jobs, this treatment burden is exhausting. Patients who cannot do both jobs may be labeled as “non-compliant,” but there is also an opportunity cost to spending so much time dealing with health care issues. Data from patient surveys and interviews, as well as absenteeism measures can help researchers evaluate the harm from treatment burden for a specific treatment.

Korenstein et al. break new ground in this piece by identifying different types of harms that all clinicians and researchers should be aware of. We have to be thinking not only about potential physical harms and complications, but the potential harms from being labeled with a diagnosis, losing trust in the medical system, and financial toxicity. Researchers should consider these harms when designing studies, and funders and journals can require that these harms be reported in new research.

“Perhaps most importantly, clinicians and patients making decisions about health services should be mindful of all domains of harms,” the authors write. By acknowledging these harms in conversations, we can have more fully informed decision-making and better patient-centered care.

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Why public health experts need to get political https://lowninstitute.org/why-public-health-experts-need-to-get-political/?utm_source=rss&utm_medium=rss&utm_campaign=why-public-health-experts-need-to-get-political Fri, 16 Oct 2020 20:48:12 +0000 https://lowninstitute.org/?p=6266 Public health experts are striving to stop the spread of Covid-19 by spreading the word about masks, social distancing, and other preventive measures. But there is much more they can and should be doing to save lives from Covid-19, argues Harvard public health professor Dr. Mary T. Bassett, in a recent article in Nature.

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Dr. Mary T. Bassett

Public health experts are striving to stop the spread of Covid-19 by spreading the word about masks, social distancing, avoiding indoor gatherings, hand-washing, and other important preventive measures. But there is much more they can and should be doing to save lives from Covid-19, argues Dr. Mary T. Bassett, director of the FXB Center for Health and Human Rights at Harvard University and new Lown Institute Board member, in a recent article in Nature. The key is to not be afraid to get involved in politics and advocacy, she writes.

We know that household crowding, low-wage work, chronic health conditions and stress, and lack of access to health care all contribute to Black and Latinx people having a greater risk of contracting and dying from Covid-19. Many of these same factors also put people of color at risk of harm from the measures we are taking to combat Covid-19, such as allowing the economy to dive without supplying financial aid, or closing schools without ensuring equal access to remote technologies. These political decisions are issues of life and death.

Public health experts are often reluctant to speak up on political matters such as racism, economic inequality, housing, or unemployment, for fear that they will be labeled “unprofessional” and lose career prospects. Considering the political climate of the Trump administration, in which government employees have been banned from holding antiracism trainings, there may be some truth to this fear. However, the rise of the Black Lives Matter movement and the resolve of medical institutions to denounce systemic racism also opens up opportunities for clinicians and researchers to speak up about political issues.

“My hope is that this new ‘political awakening’ will endure and transform how scientists participate in political life. The label ‘activist’ should be an honor, not a slur or reproach.”

Dr. Mary T. Bassett

Now is the time to reframe public health “professionalism” to mean not only being a diligent and ethical researcher, but also about using good science to identify how to save lives. This may require going beyond publishing and advocating for systemic changes that will lead to better health for all.

Public health researchers may fear backlash for not “staying in their lane.” But as Bassett writes, “When we decide that issues such as structural racism, climate change or income inequality are ‘outside our lane’, we betray both the professional reputation of our field and the health of the people we serve.”

To hear more from Dr. Bassett on the intersections between health care and racism, join us on October 21st for Lown Presents: Racism and Hospitals, a virtual conversation.

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Addressing racism in health services research https://lowninstitute.org/addressing-racism-in-health-services-research/?utm_source=rss&utm_medium=rss&utm_campaign=addressing-racism-in-health-services-research Mon, 17 Aug 2020 18:37:03 +0000 https://lowninstitute.org/?p=5715 At the 2020 Academy Health Research Meeting, presenters dug deep into the subject on everyone's minds: How do we tackle structural racism within health services research?

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At the 2020 Academy Health Research Meeting, presenters dug deep into the subject on everyone’s minds: How do we tackle structural racism within health services research? They discussed how researchers can include and explain racial disparities within their research, and how leadership can reduce structural racism within institutions themselves.

Measuring racism, not just race

It has become much more common for race to be included as a variable in health services research. However, it is not enough to merely include race as a variable; we must be thoughtful about explaining what it is we are actually measuring.

Researchers that find racial disparities in their results need to make it clear to readers that differences are not due to biological factors but environmental and sociological factors created by racism. Without this clarification, it is easy for readers and the media to perpetuate the idea that genetics or behavioral factors are to blame, not racism. For example, an Ohio lawmaker speculated that racial differences in rates of Covid-19 were because “‘the colored population’ did not wash their hands as well as other groups.”

“Leaving things unsaid in your research reporting leaves it ripe for racist inference,” said Dr. Ruha Benjamin, sociologist and an Associate Professor in the Department of African American Studies at Princeton University, and a keynote speaker at the Academy Health conference.

“Leaving things unsaid in your research reporting leaves it ripe for racist inference.”

Dr. Ruha Benjamin, Associate Professor in the Department of African American Studies at Princeton University

Linda Goler Blount, President and CEO of the Black Women’s Health Imperative, agreed. “Describing differences in data by race is fine, so long as we are not leading the reader to think, ‘It’s because they’re black,'” said Blount. “Race is not a risk factor; racism is a risk factor!”

Rather than just recording racial differences in the data, researchers should strive to capture the results of racist structures that lead to these differences. “Think about proximate causes. If you think there will be racial disparities, think about the causal factors that are behind that instead of just measuring race,” said Steven Brown, Research Associate at the Urban Institute.

“Race is not a risk factor; racism is a risk factor!”

Linda Goler Blount, President and CEO of the Black Women’s Health Imperative

The same considerations should be given when thinking about risk adjustment. There is a current debate in health policy about whether provider reimbursements should adjust for measures of social risk, and whether these should include race. On the one hand, clinicians that care for patients dealing with the health effects of racism should not be financially punished; but on the other hand, there is a fear that adjusting for race would let clinicians off the hook for treating patients of color poorly.

Benjamin suggested looking behind the binary of either including or not including race in the risk adjustment. “What would it look like for the inputs to reflect how providers treat patients? How do patients feel seen and heard by providers?” she said. “Data needs to capture the relationship, not just the racial identities.”

Including race in research tools without understanding why disparities occur can lead to biased algorithms that reproduce inequities. But removing race altogether (making an algorithm “race neutral”) can still be discriminatory. One example is an algorithm that was widely used to allocate health care to patients based on their supposed medical need, but used cost as a proxy for need, which made Black patients seem less sick than white patients. This is what Benjamin calls “The New Jim Code” (a variation on Michelle Alexander‘s book, The New Jim Crow), referring to technology that appears more fair by bypassing human decision-making, but in fact bakes inequality further into the system.

Look inward for change

Presenters stressed the importance of examining structural racism in one’s own workplace, as a way to fight racism. There is a tendency within medical and research institutions to deal with topics of race without looking at evidence, despite being “data-driven” on every other issue.

“When it comes to addressing racism in research, why do we go by ‘feelings’?” said Dr. Sherilynn Black, Associate Vice Provost for Faculty Advancement at Duke University. “We need to treat this topic with the rigor it deserves.”

Measuring racism within institutions is critical toward reducing it, but too often there is no attempt to even measure things like who gets hired, who gets promoted, which projects get funded, etc. “We need to set targets and have the benchmarks come from the top,” said Brown. “Accountability structures are fundamental.”

“We recognize there are differences in funding rates, applicant pools, differences in the way review occurs for people of difference backgrounds.”

Dr. Nakela Cook, Executive Director at the Patient-Centered Outcomes Research Institute (PCORI)

Presenters also identified ways in which institutions can tackle racism inside their walls, beyond just “Diversity and Inclusion” trainings, which don’t change the fundamental structure of institutions. Looking at board composition, project funding, the application and review process, the tenure and promotion process, committee composition, event planning, and mentoring and sponsorship, are all potential avenues for change.

Alan Weil, editor-in-chief of Health Affairs, noted that there is a bias in medical research toward quantitative results, but that leaves out important research. He plans to broaden the types of methods they cover in the journal, to break down this barrier.

Similarly, Dr. Nakela Cook, Executive Director at the Patient-Centered Outcomes Research Institute (PCORI), acknowledged that inequities are prevalent in the way we fund public health research. “We recognize there are differences in funding rates, applicant pools, differences in the way review occurs for people of difference backgrounds,” said Cook. Cook also identified opportunities to “experiment in the application evaluation process” and “elevate communities as partners in research.”

And of course, it is incredibly important to recognize that the solution is not individual, but structural. Our academic institutions were not designed to help everyone succeed; they were originally designed to exclude, said Black. “We should not try to fix people to fit a racist structure; we should fix the racist structure,” she said.

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Video: Science’s Viral Misinformation https://lowninstitute.org/video-sciences-viral-misinformation/?utm_source=rss&utm_medium=rss&utm_campaign=video-sciences-viral-misinformation Mon, 15 Jun 2020 14:42:23 +0000 https://lowninstitute.org/?p=5047 Watch the video of Shannon Brownlee and Jeanne Lenzer discussing pandemic misinformation in a Future Tense conversation.

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In case you missed the Future Tense conversation with Lown Institute VP Shannon Brownlee and investigative journalist Jeanne Lenzer on pandemic misinformation, the video recording is now available! The event was hosted by New America and the Consortium for Science, Policy, and Outcomes at Arizona State University.

Shannon and Jeanne discuss roller coaster of findings on hydroxychloroquine and remdesivir, and how history appears to be repeating itself when it comes to using unproven drugs in a pandemic. Watch the video below for more:

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How bad science sows doubt https://lowninstitute.org/how-bad-science-sows-doubt/?utm_source=rss&utm_medium=rss&utm_campaign=how-bad-science-sows-doubt Tue, 03 Mar 2020 14:29:54 +0000 https://lowninstitute.org/?p=3532 In a new book, former OSHA director David Michaels reveals how some industries use bad science to "manufacture uncertainty" about the harms of their products.

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What do tobacco, diesel engines, football, and talc all have in common? The industries that make and sell these products have all conducted elaborate campaigns to “manufacture uncertainty” about the harms they cause. And they do it with the help of scientists for hire.

In his recently published book, The Triumph of Doubt: Dark Money and the Science of Deception, Dr. David Michaels, epidemiologist and former head of the Occupational Safety and Health Administration (OSHA), outlines how numerous industries employ “product defense firms” to ward off regulation and lawsuits. These firms produce “evidence” that these products are not as dangerous as previous studies show, using a combination of bad science, sneaky statistics tricks, and plain old lies.

Here are a few ways that industries and product defense firms bend the data and secretly influence environmental and public health policy:

  1. To increase doubt about the evidence surrounding a product, conduct a literature review that includes both independent and conflicted research. Even if there are more studies that make a product look bad, the biased studies will provide a counterweight, adding to the “uncertainty” in the evidence base.
  2. If a study shows that a product is dangerous, do a “re-analysis” using a different research design that finds a new result. With epidemiological studies, changing certain variables until you get the result you want (often known as “p-hacking”) is easy to do. Scientists know that these re-analyzed studies are unreliable, but the public may not, especially if the “new” study is aggressively publicized.
  3. To hide the funding sources behind new research on industry products, create a front group with an academic-sounding name, like the Alcohol Beverage Medical Research Foundation (created by beer and malt beverage producers) or the Mining Awareness Research Group (created by the diesel industry)
  4. If evidence shows that a product is dangerous, change the narrative. Create studies to prove that it is only dangerous is large quantities and that “moderate” use or exposure is fine. This is what the alcohol industry tried to do by funding a National Institutes of Health study to show that moderate alcohol use has cardiovascular health benefits.
  5. Claim that scientists conducting research about a product are “independent” because they are not directly paid by industry, even when they are hired by product defense firms that are paid by industry.
  6. When faced with evidence that a product is dangerous, shift the burden of proof from industry to regulators. Demand “proof beyond a shadow of a doubt” that the product is dangerous, as if the regulatory process is a criminal trial. This is what Johnson & Johnson did to avoid regulation of talc as a carcinogen, despite mounting evidence that talc is linked to ovarian cancer.

To help make our food, environment, and homes safer, we need to address conflicted parties that use the mantle of “science” to defend industry. Michaels suggests adopting the World Health Organization’s policy of not allowing conflicted scientists to write reports about exposures or issue regulations or vote in the panels’ conclusions. All conflicts of interest, especially those hiding behind many layers of funding, must be uncovered or disclosed. This would be the least we could do.

Michaels urges other broader changes in regulation, such as requiring proof of safety for chemicals before allowing them, rather than our current policy of assuming that chemicals are “innocent until proven guilty.” Even more importantly, while science is necessary for understanding the effects of certain products, change will not happen with science alone– organizing for change is key.

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