The Medical Care Blog http://www.themedicalcareblog.com The official blog of the peer-reviewed journal Medical Care, sponsored by the Medical Care Section of the American Public Health Association Thu, 22 Jun 2017 14:00:37 +0000 en-US hourly 1 https://i2.wp.com/www.themedicalcareblog.com/wp-content/uploads/2016/02/cropped-MC-e1455246578252.jpg?fit=32%2C32 The Medical Care Blog http://www.themedicalcareblog.com 32 32 106482678 The Intersection of Religion, Female Empowerment, and Access to Reproductive Healthcare http://www.themedicalcareblog.com/intersection_religion_female_empowerment_access_to_reproductive_healthcare/ Thu, 22 Jun 2017 14:00:37 +0000 http://www.themedicalcareblog.com?p=1773&preview=true&preview_id=1773 Read More »

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Rebekah Rollston

Rebekah Rollston

Rebekah L. Rollston, MD, MPH, is a Family Medicine Resident at Tufts University at Cambridge Health Alliance in Massachusetts. She earned her Medical Degree from East Tennessee State University James H. Quillen College of Medicine and her Master of Public Health from The George Washington University Milken Institute School of Public Health. Her professional interests include increasing access to primary care, health disparities among marginalized women, gender-based violence & intimate partner violence, access to contraception, adolescent pregnancy prevention, transgender health, self-esteem development, addiction medicine, and international health.

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Reproductive rights have been a topic for policy making and legal jurisprudence throughout much of the past century. As the healthcare system of the United States continues to evolve, women’s health and reproductive rights remain central to the debate.

A recent policy update by Aishwarya Rajagopalan and Lisa Lines here at The Medical Care Blog discusses the draft of an interim final rule by the Trump Administration, which would likely result in loss of contraceptive coverage for millions of women in the United States.

Also earlier this month, Timothy Jost wrote in the Health Affairs Blog that the draft interim final rule would expand the earlier exemption to the contraceptive mandate present under the Obama Administration, such that “all employers that have a religious or moral objection to the provision of all or a subset of contraceptives, or to sterilization or related patient education and counseling,” are exempt from providing contraceptive coverage to their employees (or students, in the case of universities), including for-profit corporations. The Trump Administration will accept comments on the draft interim final rule for sixty days, after which the rule will be effective upon publication.

Burwell v. Hobby Lobby is a landmark United States Supreme Court case from 2014 in which the majority ruled in Hobby Lobby’s favor:

“finding that ‘closely held’ for-profit employers had religious free exercise rights, that the contraceptive mandate substantially burdened these rights, and that — although the contraceptive rule might serve a compelling governmental interest — the religious organization accommodation rule demonstrated that the federal government could in fact accommodate the interest of for-profit employers.”

Religious organizations that are anti-contraception often claim this on the basis that some, or all, forms of contraception are abortifacients, and that this goes against a religious or moral belief. This was indeed the argument in the case of Hobby Lobby.

However, such organizations seem to contravene scientific research and medical facts in their arguments. Emergency contraception and intrauterine devices (IUDs) are the forms of contraception most often claimed to act as abortifacients. However, the primary mechanism of action for emergency contraception (also known as Plan B) is to inhibit ovulation, an analogous mechanism of action to that of most other estrogen-progesterone and progestin-only oral contraceptives. Note that inhibition of ovulation occurs prior to fertilization.

The primary mechanism of action for the hormonal IUD is to thicken cervical mucus, thereby acting as a physical barrier to prevent sperm from reaching an oocyte. Hormonal contraception has mechanisms of action that occur prior to fertilization and thus, is not in conflict with even the most conservative beliefs of when life begins.

Next, access to reproductive healthcare is key to the social and economic empowerment of women in society.

  • Women are empowered in society through education; access to contraception plays a significant role in this empowerment, as it increases the odds that women will graduate from high school, college, and professional programs.
    • The Guttmacher Institute reports that access to contraception has resulted in more women pursuing and graduating from college, which results in increased earning power and a decreased gender pay gap.
    • Access to contraception has also been found to be a catalyst for women pursuing careers in dentistry, medicine, and law.
  • Financial and geographic access to contraception is widely accepted as the primary mechanism for reduction and prevention of adolescent pregnancy.
    • The Centers for Disease Control and Prevention (CDC) states that adolescent pregnancy is a significant contributor to high school dropout rates for young women.
    • CDC states that approximately 50% of adolescent mothers achieve a high school diploma by the age of 22 years old, whereas 90% of female students who are not adolescent mothers graduate from high school.

Importantly, the American Public Health Association supports “protection and fulfillment of universal rights to safe, voluntary, confidential access to the full range of contraceptive methods” and “urges governments and international organizations to respect, protect, and fulfill sexual and reproductive health and rights.”

Reproductive health has been the subject of debate by politicians and religious leaders alike for much of the past century. However, we must consider the ethics of the restrictive measures often placed on reproductive rights. The guiding principles of bioethics include autonomy, beneficence, utility, and justice. With these principles in mind, I argue that the interim final rule is another step towards further oppression of women, as well as ideologically and economically hurtful to society. Access to reproductive healthcare affects all genders; reproductive freedom is a human rights issue.

Author information

Rebekah Rollston

Rebekah Rollston

Rebekah L. Rollston, MD, MPH, is a Family Medicine Resident at Tufts University at Cambridge Health Alliance in Massachusetts. She earned her Medical Degree from East Tennessee State University James H. Quillen College of Medicine and her Master of Public Health from The George Washington University Milken Institute School of Public Health. Her professional interests include increasing access to primary care, health disparities among marginalized women, gender-based violence & intimate partner violence, access to contraception, adolescent pregnancy prevention, transgender health, self-esteem development, addiction medicine, and international health.

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POLICY UPDATE: Contraception Coverage http://www.themedicalcareblog.com/policy-update-contraception-coverage/ http://www.themedicalcareblog.com/policy-update-contraception-coverage/#comments Thu, 15 Jun 2017 14:00:40 +0000 http://www.themedicalcareblog.com/?p=2004 Read More »

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Aishwarya Rajagopalan

Aishwarya is a second year medical student at the Philadelphia College of Osteopathic Medicine. Before starting medical school, she received a BA in Public Health Studies and French from Johns Hopkins University and an MHS in Mental Health with a certificate in Population and Health from the Johns Hopkins Bloomberg School of Public Health. Her passions include mental health policy, social determinants of health, and the link between physical and mental health.

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The burden of contraception falls primarily on women. In the United States, women need prescriptions for the majority of contraceptive methods, and so are vulnerable to changes in the healthcare system affecting access to care. Recently, President Trump has issued executive orders on religious liberty and related subjects that have paved the way for a rule to expand the grounds on which corporations and insurers could claim a moral or religious exemption to providing coverage for contraception. 

At the same time, the US Congress is attempting to replace the Affordable Care Act (ACA). One of the act’s provisions, which was near-universally lauded by the public health community, was that insurance companies had to cover preventive care services, including contraception, with no out-of-pocket costs (deductibles, co-payments, or co-insurance). More than 55 million women now have access to birth control without out-of-pocket costs — saving more than $1.4 billion on birth control pills in 2013 alone.

The birth control benefit, as it’s commonly known, has been a boon for many women, but it is unlikely to survive in the replacement plan. Moreover, the Trump administration doesn’t have to wait for new legislation — they can roll back contraception coverage through the rulemaking process. We may see a return to the days when many insurance plans cover Viagra, but not the pill.

How do women access contraception in the current marketplace?

Most post-ACA healthcare plans covered the preventive service of contraception in the majority of its forms, including oral contraceptives and long acting reversible contraceptive methods (LARCs). Most forms of contraception have multiple uses, from treating heavy menstrual flow and cramping to family planning, so their inclusion in healthcare plans is generally seen as a reasonable service.

The notable exception to this rule is religious organizations. Under the Obama Administration, organizations that were primarily religious in nature, such as churches, were not obligated to provide plans covering contraception to their employees if it was against the key tenets of their beliefs. These organizations generally fell under IRS codes for religious organizations and did not comprise a large portion of the employer market. 

What are the changes in the new rule?

The new rule, which could become law as soon as it is published in the Federal Register, expands the definition of organizations that exempt themselves from including plans with contraceptive coverage in their catalog of choices for employees. In particular, there is repeated reference to moral conviction and moral objection to contraception, while previous iterations of exclusion criteria primarily focused on non-profit religious organizations.

This means virtually any employer or insurer who had a moral or religious objection to covering contraception could opt out of doing so. While it is not clear what impact this could have, it is not difficult to imagine that this could lead to an increase in employers seeking exemption from covering contraception and family planning services.

This is especially troublesome for many lower-income women, who would further be affected by cuts in several federally funded programs that could subsidize the cost of reproductive healthcare for them, including Title X. While this by no means signals the end of contraceptive care in the United States, it does have the potential to pose an impediment to access. And with proposed budget reductions in Medicaid and TANF, these changes will have the largest impact on women of lower socioeconomic status.

What is the likelihood of this becoming policy, and in effect law?

The rule is still under review by the administration, but it has been fast-tracked in an effort to clear it before opponents gain traction. (Update: Once the draft rule is released, the Trump Administration will accept public comments for 60 days.) If you are concerned about the implications of such a policy, or would like to further engage in dialogue about this topic, it is important to contact your legislators! You can find your House Representatives here and your Senator here.

Author information

Aishwarya Rajagopalan

Aishwarya is a second year medical student at the Philadelphia College of Osteopathic Medicine. Before starting medical school, she received a BA in Public Health Studies and French from Johns Hopkins University and an MHS in Mental Health with a certificate in Population and Health from the Johns Hopkins Bloomberg School of Public Health. Her passions include mental health policy, social determinants of health, and the link between physical and mental health.

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How Accurate is Your Activity Tracker? http://www.themedicalcareblog.com/how-accurate-is-your-activity-tracker/ Thu, 08 Jun 2017 14:00:47 +0000 http://www.themedicalcareblog.com/?p=1993 Read More »

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Alexa Ortiz

Alexa Ortiz

Health IT Scientist at RTI International

Alexa Ortiz graduated from the University of North Carolina at Charlotte in 2009 with a Bachelor of Science in Nursing. Before receiving her graduate degree she was a practicing nurse for five years and has clinical experience in the field of both Cardiology and Neurology. In 2014 she received a Master of Science in Nursing specializing in nursing informatics from Duke University. Presently, she works as a Health IT Scientist at RTI International in the Center for Digital Health and Clinical Informatics. Despite no longer working in a clinical setting, she continues to maintain an active nurse license in the state of North Carolina. Her primary areas of research at RTI International focus on the clinical implementation of health information technology and the evaluation of consumer wearable devices.

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The functionality and popularity of consumer-grade activity trackers (such as Fitbit) appear to be ever-increasing.  If you don’t personally own one, you probably know at least one or two people who do.  In an online survey of 1,000 respondents [PDF], conducted in 2016 by PwC, 45% owned a fitness band, with “Health” being the primary motivator for purchase. Further, adoption of wearable activity trackers appears to be going strong, with 57% of respondents saying they would likely purchase a fitness band in the next 12 months.

With activity trackers becoming so common, have you ever wondered about their accuracy?  Just how correct are those devices when they tell you how many steps you’ve taken or how much sleep you’ve gotten?

This recently published article focusing on a small sample has gotten some press lately, but let’s dig a little deeper. A 2015 article in the International Journal of Behavioral Nutrition and Physical Activity looked the validity and reliability of activity trackers (Fitbit and Jawbone) by systematically reviewing the literature on 5 measures: steps, distance, physical activity, energy expenditure, and sleep. Of the 22 included studies, 21 reviewed the validity of at least one activity tracker, and 7 discussed the interdevice reliability of Fitbit; however, none reported the interdevice reliability of Jawbone. The authors identified the following key points:

  • Step Count: Validity for step count in both Fitbit and Jawbone were high. Interdevice reliability was high for Fitbit; however, interdevice reliability for Jawbone wasn’t evaluated. Hip-worn trackers were typically more accurate at counting steps when compared to devices worn in other locations.
  • Distance: One study discussed the validity and reliability of distance measurement. Distance was generally over-estimated at slow speeds and under-estimated at fast speeds.
  • Physical Activity: One study found that moderate-to-vigorous physical activity was overestimated, while another found it aligned with an accelerometer.
  • Energy Expenditure: Interdevice reliability was high, but validity was low and energy expenditures were often underestimated.
  • Sleep: Similar to energy expenditures, the reliability of sleep was also high, but total sleep time and sleep efficiency were generally overestimated, while wake after sleep onset was underestimated.

To muddy the waters further regarding activity trackers, a class-action lawsuit has been filed against Fitbit bringing into question the precision of Fitbit’s heart rate monitoring technology. Specifically, the claim is that Fitbit is misrepresenting the accuracy of user’s heart rates during physical activity.  While Fitbit denies this, they aren’t the only consumer wearable firm that’s faced accusations of inaccuracy.  Back in 2014, CNET measured five activity trackers (the Garmin VivoFit, the Basis Carbon Steele, the Withings Pulse O2, the Samsung Gear Fit, and the Samsung Galaxy S5) and found inaccuracies across all five devices when measuring heart rate.

Knowing your Fitbit or Jawbone might not be 100% accurate isn’t great news.  Luckily, the review by Evenson and colleagues also discusses what activity tracker owners can do to help make these devices a little more accurate:

  • Wear your activity tracker in the same spot from day to day. If you wear it on your wrist, indicate whether it’s on the dominant or non-dominant side.
  • Make sure to enter your details (such as height and weight) during the initial set-up, and then sync this information with the tracking device.
  • Replace the default stride length by calibrating the device to your stride when possible.
  • Use the journal or diary function to provide additional information to your activity tracker so it can learn what specific activities look like.
  • Obtain updates and use add-on features so your device can have the most accurate algorithm to calculate sleep or physical activity. For instance, Fitbit just released new features associated with tracking user’s sleep.
  • If your device has sleep mode settings, interact with them to help the device learn if you’re sleeping, napping, or awake.

If you’re interested in more information about activity trackers and wearable technology, check out an interview with Robert Furberg (who co-authored the activity tracker systematic review) on the podcast The Measure of Everyday Life.  Also, check out my prior post discussing why people stop wearing their Fitbits.

Author information

Alexa Ortiz

Alexa Ortiz

Health IT Scientist at RTI International

Alexa Ortiz graduated from the University of North Carolina at Charlotte in 2009 with a Bachelor of Science in Nursing. Before receiving her graduate degree she was a practicing nurse for five years and has clinical experience in the field of both Cardiology and Neurology. In 2014 she received a Master of Science in Nursing specializing in nursing informatics from Duke University. Presently, she works as a Health IT Scientist at RTI International in the Center for Digital Health and Clinical Informatics. Despite no longer working in a clinical setting, she continues to maintain an active nurse license in the state of North Carolina. Her primary areas of research at RTI International focus on the clinical implementation of health information technology and the evaluation of consumer wearable devices.

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Problems with Epilepsy Drug Treatment for Older Adults http://www.themedicalcareblog.com/problems-with-epilepsy-drug-treatment-for-older-adults/ Sat, 03 Jun 2017 04:55:00 +0000 http://www.themedicalcareblog.com?p=1821&preview=true&preview_id=1821 Read More »

Author information

Barbara Zabielski

Barbara Zabielski

Barbara Zabielski is an MPH candidate at The George Washington University whose undergraduate studies focused on biology and chemistry. She has a wide range of interests in public health, including environmental epidemiology, pharmacovigilance, Alzheimer’s disease and other neurodegenerative disorders, and autoimmune conditions. Her primary focus, however, is sexual and reproductive health in low-resource settings. She is deeply committed to promoting increased access to and utilization of modern contraceptives as a means of improving social, economic, health, educational, and environmental outcomes among diverse populations across the globe. She also hopes to contribute to the prevention of sexual violence and improvement of post-assault care, especially in refugee and post-conflict settings.

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Expensive brand-name drugs are prescribed over older, less costly generics whose efficacy and risk profiles aren’t much different. Sometimes the financial issues involved are painfully obvious, such as when a drug company introduces a new, “improved” version of a medication that is merely a longer-acting version of the same chemical entity shortly before the patent expires on the original formulation. Patients do benefit from longer-acting formulations in some instances, and some of these formulations are even cost-effective. Often, however, no significant differences are detected in large-scale comparisons of short- and longer-acting versions of a drug. There are similarly many conditions for which several chemically distinct treatments are comparable to one another in terms of potential risks and benefits and differ primarily in price.

Medications used in the treatment of epilepsy represent one situation where available evidence clearly indicates that the best approach is to avoid using some of the old “stand-by” drugs when possible. In the case of epilepsy treatment, newer, more expensive drugs are worth the additional short-term cost, both in terms of patient outcomes and long-term health expenditures.

Certain older anti-seizure medications, including carbamazepine, phenytoin, and phenobarbital, are known as enzyme-inducing antiepileptic drugs, or EI-AEDs. They effectively prevent seizures but promote increased synthesis of certain enzymes that interfere in the metabolism of many other medications as a side-effect. The increased levels of enzymes in turn reduces levels of various other drugs in whose clearance the affected enzymes participate, including antiretrovirals, chemotherapeutics, anticoagulants, antipsychotics, and hormonal contraceptives. In addition to decreased efficacy of the drugs whose removal from the body is accelerated by EI-AEDs, toxicity and serious adverse drug reactions may result upon discontinuation or reduction in EI-AED dosage. Levels of some biological molecules, including nutrients and endogenous hormones, are also reduced by EI-AEDs.

Many clinicians continue to prescribe EI-AEDs to patients rather than using newer drugs like Keppra (levetiracetam) or Lamictal (lamotrigine), despite a growing body of evidence demonstrating that the former group of medications are both riskier for patients and no better, especially in older adults, at preventing seizures. Experts in the field have expressed an inability to provide a satisfactory explanation for the continued widespread use of EI-AEDs as a first-line therapy for new-onset epilepsy.

The consequences of EI-AEDs can be serious, not only decreasing the quality of patients’ lives but potentially even shortening them. The use of EI-AED in cancer and HIV/AIDS patients can be particularly dangerous, since they can decrease levels of treatment drugs, reducing therapeutic effect and promoting resistance. Pediatric leukemia patients taking EI-AEDs are reported to have approximately triple the relapse rates observed among patients not taking such drugs, and patients with certain brain tumors taking EI-AEDs have shorter average survival periods than patients taking non-EI-AEDs. Similarly, because of their effects on certain antiretroviral medications, guidelines for treating seizures in patients with HIV/AIDS specifically recommend avoiding EI-AED use in those on common HIV treatment regimens.

EI-AEDs also affect the metabolism of hormonal contraceptives. A recent study of more than 1,100 epileptic women reported that failure rates for hormonal contraceptives were more than four times higher among women taking EI-AEDs than among those taking non-EI-AEDs. Unintended pregnancies are especially problematic for epileptic women, who are at greater risk for complications, such as congenital abnormalities and decreased IQ scores among offspring prenatally exposed to anti-seizure drugs.

In addition to their effects on the metabolism of other medications, EI-AEDs affect levels of some biological molecules, including sex hormones and vitamin D. Use of EI-AEDs is associated with sexual problems, including decreased sexual satisfaction among women and increased sexual dysfunction in men compared to patients treated with non-EI-AEDs. Patients using EI-AEDs are also at increased risk for fractures due to drug-related bone loss.

Long-term use of EI-AEDs may also increase vascular risks. Shortly after switching from an EI- to a non-EI-AED, persistent reductions in total serum cholesterol and C-reactive protein – major risk factors for cardiovascular-related as well as all-cause mortality – are observed. Long-term use of EI-AEDs has been linked to progression of atherosclerosis, as well as associated with a 46% increased risk of myocardial infarction relative to the risk observed among patients taking non-EI-AEDs for the same duration.

The downsides to using EI-AEDs are so pronounced that epilepsy treatment guidelines specifically recommend against their initial use in new patients, especially older adults. The Quality Indicators for Epilepsy Treatment (QUIET) guidelines expressly state: “IF a newly diagnosed person with epilepsy is over the age of 60 and is not currently on any AED therapy, THEN use of enzyme inducing AEDs (phenobarbital, phenytoin, carbamazepine) should not be started unless at least two other AEDs have been unsuccessful in stopping seizures or have intolerable adverse effects.” Original iteration publicly available here; updated QUIET indicators available in supplemental file here.

A recent examination of Medicare D claims to investigate prescribing practices related to the QUIET-9 guideline found that over 40% of patients identified as new probable epileptics initially received an EI-AED during 2009, despite the existing recommendations that such drugs be avoided in new patients over 60 until they had tried and failed at least 2 non-EI-AED alternatives. Additional analyses revealed no significant disparities in receipt of QUIET-9 concordant treatment based on race or ethnicity after controlling for other factors. However, equality in substandard care is nothing to celebrate. The findings are consistent with those of other studies and demonstrate a need for improvement in this area.

Why are EI-AEDs so commonly prescribed as first-line treatment to new patients despite the explicit recommendations? No one really knows, but the reported pattern for epileptic treatment is consistent with a myriad of findings in various other areas of health care. Satisfactory explanations for such “quality problems” – ongoing patterns of medical care that fail to incorporate well-established evidence and clinical guidelines into actual practice – are lacking.

How can we improve the care received by older epileptics and prevent EI-AEDs from being used as first-line therapy? An overview of systematic reviews of interventions to promote various types of quality-related behavior change among medical providers published between 1966 and 1998 concluded that educational outreach and prescribing reminders as well as multifaceted interventions were most effective, and that passive approaches were generally unsuccessful. A more recent overview of reviews published between 2005 and 2015 drew similar conclusions.

It might be useful to include prescribing reminders in electronic health systems to notify providers inputting EI-AED prescriptions for patients over 60 that the drugs should not be used in the case of a new-onset seizure until at least 2 non-EI-AEDs had first been tried. This approach is consistent with the conclusions drawn by the authors of the more recent overview of reviews mentioned, who reported that “clinical decision support systems were found to be beneficial in improving knowledge, optimizing screening rate and prescriptions, enhancing patient outcomes, and reducing adverse events.”

It is important to note that the authors of the Medicare D claims analysis referenced above found that older patients were 83% more likely to receive QUIET-9 concordant care if seen by a neurologist close to the occurrence of their first seizure than those who did not see a specialist. Moreover, patients not seen by a neurologist close to the time of their first seizure were more likely to be African American, eligible for the low-income Part D subsidy, and reside in a high-poverty zip code. It might therefore be helpful to examine interventions to ensure and encourage appropriate specialty referrals for new epilepsy cases among Medicare beneficiaries, both to improve outcomes among older Americans in general and to reduce racial and socioeconomic disparities in epilepsy care


 

Author information

Barbara Zabielski

Barbara Zabielski

Barbara Zabielski is an MPH candidate at The George Washington University whose undergraduate studies focused on biology and chemistry. She has a wide range of interests in public health, including environmental epidemiology, pharmacovigilance, Alzheimer’s disease and other neurodegenerative disorders, and autoimmune conditions. Her primary focus, however, is sexual and reproductive health in low-resource settings. She is deeply committed to promoting increased access to and utilization of modern contraceptives as a means of improving social, economic, health, educational, and environmental outcomes among diverse populations across the globe. She also hopes to contribute to the prevention of sexual violence and improvement of post-assault care, especially in refugee and post-conflict settings.

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Trying to Reduce Unnecessary Emergency Visits? First, Strengthen Our Primary Care System http://www.themedicalcareblog.com/trying-to-reduce-unnecessary-emergency-visits-first-strengthen-our-primary-care-system/ Fri, 26 May 2017 11:10:10 +0000 http://www.themedicalcareblog.com/?p=1792 Read More »

Author information

Gregory Stevens

Gregory D. Stevens, PhD, MHS is a health policy researcher, writer, teacher and advocate. He is an Associate Professor of Family Medicine and Preventive Medicine at the Keck School of Medicine of the University of Southern California.

He received both his masters and PhD from the Johns Hopkins University Bloomberg School of Public Health, with a focus on health care policy. He has focused his research on primary health care, children’s health, health disparities and vulnerable populations.

He is an author of the book Vulnerable Populations in the United States and you can find his peer reviewed papers in Medical Care, Health Services Research, Journal of General Internal Medicine, and American Journal of Public Health, among other journals.

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Emergency departments (EDs) nationwide are busy places. In some locales they are overcrowded. In places like Los Angeles and other dense, urban areas with high poverty, they are over-capacity to such an extent that they can grind to a halt for all but the highest priority cases.

In years past, it was not unheard of for a major Los Angeles ED to have waiting times of up to 72 hours. Yes, three days. This is easily a long enough wait, as one triage nurse put it to me, for patients to actually get better and go home. A long wait is not a proper form of triage, but for some EDs there is clearly little choice.

A common understanding (and possible point of pressure relief) is that some, if not many, patients who are seen in the ED could be re-directed away from the ED and managed in primary care. On the surface, this makes sense. Patients use the ED for things as simple as pregnancy tests, which to many observers is absurd.

But changing that is not so simple.

Some rather unhelpful perceptions of ED users further complicates the process. For example, if someone is paying for their own care, getting a pregnancy test at the ED seems simply like an expensive choice. But if you are uninsured or Medicaid-insured (where taxpayers are often picking up the tab), getting a pregnancy test at an ED is, in my experience, more often perceived as abuse.  Remember, the federal Emergency Medical Treatment and Labor Act (EMTALA) requires hospitals to see and stabilize all patients regardless of insurance or ability to pay.

A student of mine, who works part-time in a local ED, rightly asked whether the new American Health Care Act (the Republican-led bill to repeal and replace ObamaCare) might help solve this problem. Colleagues in his ED had told him that rampant abuse of EDs by Medicaid patients would be less of a problem if fewer people had Medicaid.  They are right. But mostly in a way that solves the needs of the ED, not the needs of patients.

Health insurance, including Medicaid, opens the door to medical care, including EDs. So fewer insured means fewer users of ED care. With the Congressional Budget Office estimating the Republican bill will cause more than 14 million people to lose Medicaid coverage, some EDs could see indeed fewer patients in their waiting rooms. But those patients (and the 9 million privately insured patients who will also lose coverage) will not just stop getting absurd pregnancy tests in the ED. Many of them will stop getting care altogether.

The story, however, is not really about EDs or insurance.

The overcrowding in EDs is probably more about primary care. If we are going to argue (or hope) that primary care can divert some ED visits, the primary care system must be capable of receiving them. And that is not entirely clear.

The workforce challenges in primary care are nothing new. A recent UCSF report on California shows that only 36% of MDs now provide primary care, and only two small regions of the state meet the minimum ratio of primary care physicians to population (60 per 100,000 population) that the Council on Graduate Medical Education recommends. Two larger areas of the state, in fact, have ratios below those required by law for managed care plans. The same report finds that nurse practitioners and physician assistants do not yet solve these deficits.

Are we still overestimating how many ED visits can be offset by primary care?

A new piece published in Medical Care, “Incorporating Alternative Care Site Characteristics into Estimates of Substitutable ED Visits” offers some valuable perspective here. In short, the authors say it is not enough to simply assume that primary care can handle ED diversions, but that we should consider the hours that primary care is open and the services that primary care offers.

Take the example of the pregnancy test.  Nearly all primary care offices can do these. But say a woman learns that she might be pregnant on a weekend.  She may be able to get a pregnancy test faster by going to the ED than waiting until her primary care provider’s office re-opens the following week. She may even have to wait for an appointment later in the week. In such a case, is this still an absurd ED visit?  Perhaps not.

Another example is someone with an injury that requires an X-ray. Even if this happens during normal primary care business hours, many primary care offices do not own an X-ray machine. In such a case, a referral may be required to another site that may also need a separate appointment. In such a case, is going to the ED for a simple X-ray still considered unnecessary?  Probably not.

There are many complex examples we could consider. And the authors urge us to do so by offering a range of hours that primary care offices are in practice and a range of service capabilities. Using these scenarios, the authors suggest that we might be able to cut ED visits by anywhere from 5 to 27%, which is probably lower than the stories about absurd and abusive ED visits suggest.

In brief, the problem with ED overcrowding is probably less a story of emergency departments, than it is about the relatively stressed primary care system. Strengthening the primary care system is a necessary first step to buffering against overuse of the ED.

If you want to dig more into these issues, I’ve written before about the value of primary care, and some innovations in ways to deliver that care. And a colleague on the Medical Care Blog recently wrote an excellent piece about team-based care in primary care. Be sure to check those out (additional blogs on primary care can be found here).

Author information

Gregory Stevens

Gregory D. Stevens, PhD, MHS is a health policy researcher, writer, teacher and advocate. He is an Associate Professor of Family Medicine and Preventive Medicine at the Keck School of Medicine of the University of Southern California.

He received both his masters and PhD from the Johns Hopkins University Bloomberg School of Public Health, with a focus on health care policy. He has focused his research on primary health care, children’s health, health disparities and vulnerable populations.

He is an author of the book Vulnerable Populations in the United States and you can find his peer reviewed papers in Medical Care, Health Services Research, Journal of General Internal Medicine, and American Journal of Public Health, among other journals.

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The Impact of Social Media in Healthcare http://www.themedicalcareblog.com/impact-of-social-media-in-healthcare/ Thu, 18 May 2017 14:00:04 +0000 http://www.themedicalcareblog.com?p=1458&preview=true&preview_id=1458 Read More »

Author information

Alexa Ortiz

Alexa Ortiz

Health IT Scientist at RTI International

Alexa Ortiz graduated from the University of North Carolina at Charlotte in 2009 with a Bachelor of Science in Nursing. Before receiving her graduate degree she was a practicing nurse for five years and has clinical experience in the field of both Cardiology and Neurology. In 2014 she received a Master of Science in Nursing specializing in nursing informatics from Duke University. Presently, she works as a Health IT Scientist at RTI International in the Center for Digital Health and Clinical Informatics. Despite no longer working in a clinical setting, she continues to maintain an active nurse license in the state of North Carolina. Her primary areas of research at RTI International focus on the clinical implementation of health information technology and the evaluation of consumer wearable devices.

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What’s the first thing you do when you get sick? For many people, a cursory search through various online resources is the initial step in gathering information toward obtaining a diagnosis.  The internet places an infinite number of health-related resources at our fingertips, many of which are consumed through social media.

Presently, 74% of US internet users participate in social media, and of those users, 80% are searching for health information. The rapid adoption and prevalence of social media among internet users has allowed it to become an innovative and disruptive force within the healthcare field, potentially influencing the opinions and interactions of both patients and providers.

Before diving in to discuss the impact of social media in healthcare, let’s first define the term “social media.”  This article defines social media as follows:

“The term generally refers to Internet-based tools that allow individuals and communities to gather and communicate; to share information, ideas, personal messages, images, and other content; and, in some cases, to collaborate with other users in real time.”

This IMS Institute for Healthcare Informatics report [PDF], Engaging Patients through Social Media, further describes social media as encompassing a wide variety of online, interactive platforms that host user-generated content.  These can be blogs (like this one!), social/professional networking sites, virtual communities, wikis, or video-/image- sharing sites.

Impact on Patients

For patients, social media can be a valuable source of information or a dangerous source of misinformation. This article in the Health Informatics Journal describes a systematic review of how both video and text-based social media are used and perceived by patients.  The authors found that social media can support patient empowerment, engagement, and build communities, but since little is known about the quality of information circulating throughout social media, there’s always a risk of it being incorrect or misleading.

Wired magazine recently provided a specific example of social media’s impact on healthcare through “patient influencers.” The article describes how many of those diagnosed with a chronic disease have taken to social media to provide insights and give a voice to their condition. However, while social media provides patient influencers and patients with a virtual community to share their concerns and experiences, there’s no oversight, and no guards against potential conflicts of interest.

Impact on Providers

Social media can also serve as a useful tool for providers, not only for professional networking and information sharing, but for patient education as well. An exploratory survey of 17 physicians (76% of whom were bloggers) identified the benefits of social media involvement,  including career advancement and staying up-to-date on the latest literature. Barriers included lack of institutional support, employer backlash, unfamiliarity with technology, time requirements, and the fear of saying something wrong.

Some providers see social media as a source of low-cost health information for themselves and an opportunity for community outreach. In another survey involving 485 physicians, 24% reported using social media at least once a day to look for medical information and 60% said social media enhances the quality of care they provide.

On the other hand, the use of social media does not come without risks for providers. Healthcare providers are responsible for protecting the privacy of patient information and HIPAA regulations govern patient-provider electronic communications.  Additionally, providers must consider legal and ethical issues associated with using social media for patient care purposes.

Impact on Patient-Provider Interactions

Social media can also affect patient-provider relationships by facilitating communication outside of the traditional office setting. One study focusing on adolescents with psychiatric illnesses indicated that social media allows for a less anxiety-provoking mode of communication (than face-to-face), constant access to providers, and more consistent monitoring. Furthermore, patients are using social media sites like Yelp to find and rate physicians and post detailed accounts of their interactions.

As social media plays a larger role in healthcare, how will patients, providers, and the overall healthcare industry adapt? Stay tuned!

Author information

Alexa Ortiz

Alexa Ortiz

Health IT Scientist at RTI International

Alexa Ortiz graduated from the University of North Carolina at Charlotte in 2009 with a Bachelor of Science in Nursing. Before receiving her graduate degree she was a practicing nurse for five years and has clinical experience in the field of both Cardiology and Neurology. In 2014 she received a Master of Science in Nursing specializing in nursing informatics from Duke University. Presently, she works as a Health IT Scientist at RTI International in the Center for Digital Health and Clinical Informatics. Despite no longer working in a clinical setting, she continues to maintain an active nurse license in the state of North Carolina. Her primary areas of research at RTI International focus on the clinical implementation of health information technology and the evaluation of consumer wearable devices.

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Can Claims Data Algorithms Identify the Physician of Record? http://www.themedicalcareblog.com/can-claims-data-algorithms-identify-the-physician-of-record/ Thu, 11 May 2017 15:15:56 +0000 http://www.themedicalcareblog.com?p=1807&preview=true&preview_id=1807 Read More »

Author information

Eva DuGoff

Eva DuGoff

Eva DuGoff is a health services researcher in the Department of Health Services Administration at University of Maryland and Department of Population Health Sciences at the University of Wisconsin-Madison. She holds a PhD from Johns Hopkins Bloomberg School of Public Health and a MPP from the Trachtenberg School of Public Policy and Administration. George Washington University. Dr. DuGoff’s research focuses on improving the care delivery and health outcomes for older adults with multiple chronic conditions and Medicare policy. She can be reached on twitter at @evadugoff.

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Medical claims data are collected for payment purposes. However, these data are often used for other purposes such as studying quality of care, assessing provider performance, and measuring health. These data are a rich resource for health services research, but when they do not include key pieces of information we can find ourselves bending over backward to develop (or use) algorithms to fill in the missing pieces. Algorithms used in one study can gain a life of their own and soon become the de facto standard. In our paper, recently published by Medical Care, we revisit commonly used algorithms to assign patients to a primary care physician (PCP) and assess how well these algorithms work in a sample of Medicare beneficiaries with diabetes.

Continuity of care from a single PCP is important for patients with multiple chronic conditions, but it can be difficult to identify a patient’s PCP in medical claims datasets frequently used for research. We compared commonly used algorithms for selecting a PCP against the PCP listed in the electronic health record and found that claims-based algorithms can misclassify a patient’s PCP in as much as 75% of cases, particularly for vulnerable patients.

Researchers and payers have developed a variety of algorithms to infer a patient’s primary physician or responsible healthcare provider using claims data. Algorithms typically assign patients to the healthcare provider who delivers the majority or plurality of services. When these algorithms do not identify a single physician, researchers sometimes include tie-breakers to maximize attribution such as amount billed or time from first to last visit.

We compared how well claims data algorithms identify the listed PCP of record in an academic health system’s electronic health record. We focused on patients with diabetes who were continuously enrolled in the Medicare program. Reflecting our interest in identifying which algorithms performed better, we report the percent of agreement between the PCP of record and the physician identified by the claims-data algorithm. While there are a number of potential algorithms to choose from, we focused on two popular algorithms that assign patients based on the majority or plurality of visits, and then also examined permutations of these algorithms limited to all physician visits versus primary care visits and the use of tiebreakers.

Overall, we found that the plurality algorithms had significantly higher concordance rates than the majority algorithm and that the analysis limited to primary care physician visits generally had higher concordance than when all visits were included. However, it is important to note that performance of these algorithms varied substantially: we found claims-based assignment algorithms misclassified a patient’s PCP of record from 14% to as much as 75% of the time. Subgroup analyses found that misclassification rates were higher for vulnerable subgroups including non-Whites and individuals dually enrolled in Medicare and Medicaid. Misclassification rates were also higher among individuals most likely to experience fragmented care during the year, including those using multiple health systems, experiencing 11 or more physician visits, and experiencing a PCP change.

We recommend that researchers should use claims data algorithms with care and, when possible, use a tie-breaker to maximize attribution. Importantly, we encourage researchers to investigate whether patients from vulnerable subgroups are more likely to have their primary care physician misclassified.

 

Author information

Eva DuGoff

Eva DuGoff

Eva DuGoff is a health services researcher in the Department of Health Services Administration at University of Maryland and Department of Population Health Sciences at the University of Wisconsin-Madison. She holds a PhD from Johns Hopkins Bloomberg School of Public Health and a MPP from the Trachtenberg School of Public Policy and Administration. George Washington University. Dr. DuGoff’s research focuses on improving the care delivery and health outcomes for older adults with multiple chronic conditions and Medicare policy. She can be reached on twitter at @evadugoff.

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Patterns of Buprenorphine-Naloxone Treatment for Opioid Use Disorder http://www.themedicalcareblog.com/patterns-bup-nx-treatment/ Thu, 04 May 2017 17:00:00 +0000 http://www.themedicalcareblog.com?p=1457&preview=true&preview_id=1457 Read More »

Author information

Jess Williams

Jess Williams

Jessica A. Williams, PhD, MA is an Assistant Professor of Health Policy and Management at the University of Kansas Medical Center. Dr. Williams has been a member of the editorial board since 2013. Her research examines how workplace psychosocial factors affect the health and well-being of employees. Specifically, she investigates the role of pain in work disability and well-being. In addition, she researches the utilization of preventive medical services. She holds a Doctorate in Health Policy and Management from the UCLA Fielding School of Public Health, a Master's in Economics from the University of Michigan, Ann Arbor and a BA in economics from Stanford University.

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Despite a rapid expansion in the use of buprenorphine-naloxone (bup-nx) as a treatment for opioid use disorder, there is little understanding of the patterns of treatment. In a newly published-ahead-of-print Medical Care article, Brendan Saloner and colleagues from Johns Hopkins used an all-payer claims database to investigate what factors predict the duration of treatment, dosage, and continuity of treatment for bup-nx.

Bup-nx has advantages over other similar treatments, such as methadone, because it may be dispensed and prescribed in physician offices (with the stipulation that it should be used a part of a comprehensive treatment program that includes counseling or other social support). The phases of treatment are: (1) induction, (2) stabilization, and (3) maintenance. Induction requires medical monitoring, while stabilization involves altering dosing based on behaviors and symptoms. The maintenance phase can potentially be indefinite. Without knowledge of current treatment patterns, we cannot begin to estimate the effects on health and well-being or evaluate the effectiveness of different courses of action.

Saloner and colleagues started with a cohort of individuals who had filled at least 2 prescriptions for any opioid medication between 2006 and 2013 in 11 states. The main inclusion criteria for the study was having started bup-nx treatment between January 2010 and July 2012 (capturing incident use and 13 months of follow-up). The final sample included 27,273 individuals.

About 41% of individuals were treated for at least 6 months, with a mean episode length of 266 days (median=118 days). Based on the amount filled, individuals got a mean daily dosage of 14.1 mg/d). About 30% of those studied had low possession ratios and 26% had medication interruptions of at least 2 weeks.

Retention in treatment was similar for patients who got prescriptions from PCPs and psychiatrists, but lower for patients who got them from other specialists, holding all else equal. Surprisingly, given what we know about out-of-pocket payments and the use of healthcare, patients who had treatment paid for my Medicaid FFS, Medicare Part D, or third-party commercial, had lower odds of being retained at least 6 months than patients who self-paid for the majority of their treatment (and this pattern also held true for length of treatment). Despite controlling for an array of county-level factors, state of residence/filling location was significantly related to retention.

Average daily doses were higher for patients who had treatment paid for by Medicaid FFS, Medicare Part D, or third-party commercial than for self-payers (differences ranged from 0.41 mg/d to 1.37 mg/d). Individuals who got prescriptions from psychiatrists, rather than PCPs, had a slightly lower mean daily dosage (-0.77 mg/d less, 95% CI -1.17 to -0.38). The results combine to form an interesting picture of opioid treatment and directions for further study.

As pointed out by the authors, insurance plans may place time or dollar limits on coverage for opioid use treatment. Additionally, the supply of physicians who can prescribe bup-nx is limited. Also, as mentioned by the authors, little is known about how treatment patterns relate to clinical health and well-being outcomes–a clear area where more research is needed.

Author information

Jess Williams

Jess Williams

Jessica A. Williams, PhD, MA is an Assistant Professor of Health Policy and Management at the University of Kansas Medical Center. Dr. Williams has been a member of the editorial board since 2013. Her research examines how workplace psychosocial factors affect the health and well-being of employees. Specifically, she investigates the role of pain in work disability and well-being. In addition, she researches the utilization of preventive medical services. She holds a Doctorate in Health Policy and Management from the UCLA Fielding School of Public Health, a Master's in Economics from the University of Michigan, Ann Arbor and a BA in economics from Stanford University.

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The Childhood Roots of Health Inequity: Part 4 – Dr. Jennifer Manly http://www.themedicalcareblog.com/childhood-roots-health-inequity-4/ Thu, 27 Apr 2017 12:00:00 +0000 http://www.themedicalcareblog.com?p=1450&preview=true&preview_id=1450 Read More »

Author information

Lisa Lines

Lisa Lines

Health services researcher at RTI International

Lisa M. Lines, PhD, MPH is a health services researcher at RTI International, an independent, non-profit research institute. She is also an Instructor in Quantitative Health Sciences at the University of Massachusetts Medical School. Her research focuses on quality of care, care experiences, and health outcomes among people with chronic illnesses; emergency department utilization; and person-centered care and patient-centered medical homes, among other topics. She is co-editor of TheMedicalCareBlog.com and serves on the Medical Care Editorial Board. She also serves as chair of the APHA Medical Care Section's Health Equity Committee. In 2015, Dr. Lines was appointed to a 3-year term on the National Quality Forum's Neurology Standing Committee.

Views expressed are the author's and do not necessarily reflect those of RTI or UMass Medical School.

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This post is the final one in our 4-part series focusing on presentations that were delivered at a special panel session at APHA16 on the childhood roots of health inequity [part 1, part 2, part 3].

Our fourth presenter, Dr. Jennifer Manly, is Associate Professor of Neuropsychology in Neurology at the Gertrude H. Sergievsky Center and the Taub Institute for Research in Aging and Alzheimer’s Disease at Columbia University. Her presentation, Lifecourse Social Conditions and Racial and Ethnic Patterns of Cognitive Aging, was a fitting culmination of the special session, as it brought together many of the themes that others on the panel had discussed.

Evidence for disparities in cognitive aging and Alzheimer’s disease

Dr. Manly began by summarizing the evidence for disparities in cognitive aging and Alzheimer’s disease (AD). According to multiple studies, the incidence and prevalence of cognitive impairment (which includes mild cognitive impairment as well as various forms of dementia, Alzheimer’s disease, and related dementias) is higher among African Americans and Hispanics than among non-Hispanic whites. More detailed information is available in this review.

Source: Lines, L., Sherif, N., & Wiener, J. (2014). Racial and ethnic disparities among individuals with Alzheimer’s disease in the United States: A literature review. (RTI Press Publication No. RR-0024-1412). Available at: http://bit.ly/ADdisparities

Methodological challenges to AD disparities research

While the evidence of disparities appears strong, it must be interpreted in the context of the methodological challenges associated with this area of research. These include selection bias, survival bias, and complex causal pathways linking race/ethnicity, cognitive aging, and AD. Lack of data on, and adjustment for, important factors in AD incidence are also common.

Some researchers have proposed that African ancestry is associated with higher risk for cognitive decline in aging and dementia. As shown in a recent study by Marden, Walter, Kaufman, & Glymour, African ancestry is correlated with social factors, including:

  • Less education
  • Fewer years of parental schooling
  • Higher likelihood of no inheritance
  • Lower income (by an average of about $1,400/year)
  • Less wealth (by an average of about $12,000)

These social determinants of health may confound the relationship between race/ethnicity and AD incidence.

Differences in school quality may also obscure or alter that relationship. Educational attainment, whether measured in years or credentials, ignores tremendous variability in quality of schooling. Most African American seniors alive today experienced segregated school systems with different school year lengths, student-teacher ratios, and curricula. These differences led to inequalities in educational experience that are not reflected in years of schooling, yet few researchers account for this in their estimates.

Racial/ethnic disparities in AD are attenuated in analyses that adjust for key confounders

Dr. Manly finished by sharing data from the Washington/Hamilton Heights-Inwood Columbia Aging Project (WHICAP), an ongoing, community-based study of aging and dementia. In that study, models adjusted only for age/sex result in an AD incidence hazard ratio (HR) of 2.3 for African Americans and 3.1 for Hispanics. Models further adjusting for genetic markers, comorbidities, health behaviors, and years of education still found significantly higher HRs for both African Americans and Hispanics relative to non-Hispanic whites. However, after further adjusting for occupation, income, and reading level, there were no significant differences between ethnoracial groups (see presentation slides for details).

Dr. Manly concluded her presentation, and we will conclude this blog post, with the following important points:

  • Indicators of school quality explain racial disparities in cognitive function cross-sectionally and longitudinally, and also explain AD incidence trends.
  • Sociocultural factors correlate with African ancestry and may confound the relationships between African ancestry and AD risk.
  • Intervening on psychosocial factors may narrow disparities in cognitive decline and improve responses to interventions.

Author information

Lisa Lines

Lisa Lines

Health services researcher at RTI International

Lisa M. Lines, PhD, MPH is a health services researcher at RTI International, an independent, non-profit research institute. She is also an Instructor in Quantitative Health Sciences at the University of Massachusetts Medical School. Her research focuses on quality of care, care experiences, and health outcomes among people with chronic illnesses; emergency department utilization; and person-centered care and patient-centered medical homes, among other topics. She is co-editor of TheMedicalCareBlog.com and serves on the Medical Care Editorial Board. She also serves as chair of the APHA Medical Care Section's Health Equity Committee. In 2015, Dr. Lines was appointed to a 3-year term on the National Quality Forum's Neurology Standing Committee.

Views expressed are the author's and do not necessarily reflect those of RTI or UMass Medical School.

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Increasing empathy and resilience through narrative medicine http://www.themedicalcareblog.com/increasing-empathy-resilience-thru-narrative-medicine/ Thu, 20 Apr 2017 15:00:00 +0000 http://www.themedicalcareblog.com?p=1605&preview=true&preview_id=1605 Read More »

Author information

Franziska Rokoske

Franziska Rokoske

Director, End-of-Life, Palliative, and Hospice Care at RTI International

Franziska Rokoske is a researcher at RTI International and director of RTI's End-of-Life, Palliative, and Hospice Care research program. She has more than 20 years of experience as a clinician and researcher. Combining a clinical background in geriatric physical therapy with health services and policy research, she has been implementing and evaluating federally and state-funded projects and initiatives to improve health care for Medicare beneficiaries and vulnerable populations, especially patients nearing the end of life.

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In narrative medicine, the clinician seeks to understand a patient’s story of their illness and their value system. Narrative medicine helps clinicians establish an empathic and therapeutic relationship with a patient, ideally resulting in a person-centered treatment plan. Rita Charon coined that term and approach in 2001 and expanded on it in numerous subsequent publications. Several sessions of this year’s annual meeting of the American Academy of Hospice and Palliative Medicine focused on narrative medicine.

Narrative medicine is intrinsically palliative in nature, so it’s easy to see the synergy between the practice of palliative and narrative medicine.  In fact, the founder of the hospice movement, Cicely Saunders, collected and studied patient narratives to develop the core end-of-life care concepts that remain the foundations for palliative and hospice care today.

The benefits of narrative medicine extend to healthcare practitioners, as well. Narrative medicine encourages empathy while also promoting self-care and reflection on the part of the practitioner. Reflection can help protect the practitioner from burnout and “empathy fatigue.”  In a medical system that is often dehumanizing, narrative medicine can be humanizing for both patients and providers.

The conference sessions made me reflect on my early days as a health care provider, and my decision to leave clinical practice in part because of my own experience of empathy fatigue. As a physical therapist, I didn’t think I’d end up taking care of seriously ill and dying patients, but I was wrong. My program didn’t train me to take care of such patients, and it didn’t equip me with strategies to protect myself from empathy fatigue. I wonder if my path would have been different had I received such training. Unfortunately, Rita Charon’s work in defining the practice of narrative medicine didn’t emerge until many years after I saw my last patient.

I, like most “recovering clinicians,” have stories about patients I’ll never forget. My thoughts often return to a patient I’ll call Gloria. I wonder, in hindsight, how I might have treated Gloria differently had I known what I know now.

I first met Gloria in the whirlpool room, on my wound care rotation (why physical therapists do wound care is another story!).  Gloria was an older woman who had stepped on a spider, and the spider bite turned into a massive infection.  Against the odds, she survived several surgeries that spared her limb, but left her with a very large open wound. And by large, I mean the largest wound I ever saw in all my years of practice.

Gloria’s wound dressings had to be changed twice a day. Over the many weeks I cared for her, I learned that Gloria had a generally positive disposition, and she had faith that her leg would heal. I don’t think she had a clear understanding about her medical condition or her wound, but I didn’t talk with her about how precarious the situation was. I assumed her physicians were having those discussions with her. I focused on managing the wound, and being a cheerleader in the face of tremendous suffering and loss. I measured the small gains: an infection-free wound bed and incremental signs of wound healing.

From this microscopic and fragmented view, we missed the narrative Gloria was trying to share with us — the narrative that led up to her death.

Had I, or her nurses and team of physicians, been practicing narrative medicine, we might have paid attention to her attempts to engage with us in a different conversation as the end of her life approached. When occasionally she said “I don’t think I’m going to make it,” we might not have countered with a cheery, “Sure you will!” And on her last day, when she said, “I don’t think I’m going to make it today,” we might have recognized it for what it was: an attempt to initiate a difficult conversation about her premonition that this was her last day, that her death was very close at hand.

Had we tapped into our empathy for Gloria’s need to tell us the story of her suffering that day, we would have learned how she was feeling, and how it differed from other days. It might not have changed her outcome; I don’t think she could have survived regardless of what we did. But it would have changed her experience of her final contact and conversations with us that day. And it might have helped me cope with the tremendous loss when Gloria died that day.

I wish I had had the skills to engage with patients like Gloria in conversations about their fears, their attempts to bring meaning to their suffering, and their premonitions about their eventual final decline and death. I was not taught any of those things in school. Thankfully, that’s changing. The art of narrative medicine is increasingly being taught in medical schools, and residency and fellowship programs increasingly incorporate some aspects of narrative medicine in their curricula and training.

More and more physicians and other clinicians are writing books and blogs about their real-life experiences with trying to heal others—the toll and the rewards, the self-doubt and failings along with triumphs and successes. They’re learning how to care for patients and protect themselves.

This makes sense, given the increasing policy emphasis on person- and family-centered care and decision making, patient-reported outcomes, and patient experience measures. It also makes sense from the perspective of our need to train additional clinicians to be able to handle the demands of our growing population of older adults nearing end of life over the coming decades. As my colleagues described in a recent post, we need to train staff to engage in conversations about advance care planning and end of life care. Empathy is a critical ingredient for these conversations, and training in narrative medicine may provide benefits for both patients and healthcare practitioners.

The author gratefully acknowledges Juliana Saracino, BA for research assistance on this post.

Author information

Franziska Rokoske

Franziska Rokoske

Director, End-of-Life, Palliative, and Hospice Care at RTI International

Franziska Rokoske is a researcher at RTI International and director of RTI's End-of-Life, Palliative, and Hospice Care research program. She has more than 20 years of experience as a clinician and researcher. Combining a clinical background in geriatric physical therapy with health services and policy research, she has been implementing and evaluating federally and state-funded projects and initiatives to improve health care for Medicare beneficiaries and vulnerable populations, especially patients nearing the end of life.

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