When Science Fails: The Promise and Limits of Precision Medicine

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For centuries, humans have used science to explain their world. From the principles that suspend the planets in orbit to the relational pull of predator and prey, we turn to science to both examine and rationalize the experience of life. But does our reliance on science have a limit, particularly in medicine, where the “why” of disease can often escape scientific explanation?

For example, historically, medicine has poorly understood why one person gets sick and another doesn’t, particularly for complicated illnesses like cancer, diabetes, or heart disease, where multiple factors contribute to risk. Similarly, it’s been difficult to pinpoint why one medication works well for one person but not another.

And in the case of social determinants of health, medicine has yet to chart the physiology of disadvantage. That means, while we know poor people tend to be sicker, we don’t fully understand how poverty and discrimination manifest physiologically to produce disease; although there are exciting theories about stress hormones and organ function.

And so the why has evaded us, until now.

In January 2015, President Obama invested $215 million in a national Precision Medicine Initiative to use what science knows about the human genome to personalize the way doctors diagnose and treat disease.

The idea is that by using a wide range of biomedical information — including molecular, genomic, cellular, clinical, behavioral, physiological, and environmental parameters, physicians and scientists will have new tools to understand disease and determine the treatments that work best for each individual’s illness and DNA.

With such a sizable investment from the Obama administration and the partnership of trusted institutions in the scientific community including the National Institutes of Health (NIH), National Cancer Institute, and the Food and Drug Administration, this Precision Medicine Initiative promises to improve the diagnostic strength and treatment success of modern medicine. The significance of that promise cannot be underestimated.

But as we turn to science to answer the elusive why, we have to be mindful of where science has failed in the past. This is to set reasonable expectations but also to avoid repeating past mistakes. So as we move forward, here are 2 things to keep in mind.

First, as we narrow our focus from the population to the individual, it may be easy to overlook the way certain diseases are disproportionately prevalent in certain communities. If we then, limit our evaluation to the individual, their DNA, and their illness, we may miss the aggregate data that compels us to also investigate disease at the community level, where local resources and public policy may profoundly shape disease patterns and prevalence. Which is to say, while some disease is best explained from the lens of a microscope, other disease is best appreciated with a panoramic view of the environmental conditions in which that disease persists.

Second, to capture enough data to understand the human genome, the NIH and its collaborators are aiming to enroll 1 million American volunteers in the Precision Medicine research cohort. But a study published in 2014 found that non-whites account for less than 5% of clinical trial participants. More specifically, of the 10,000 clinical trials reviewed in that data, only 150, or less than 2%, focused on a racial or ethnic minority population.

So, if the Precision Medicine cohort is anything like the clinical trial cohorts from the past, women, minorities, and the elderly may be underrepresented; not to mention undocumented “non-Americans” who are generally excluded from scientific research. That means, while some patients will receive care uniquely tailored to them, women, minorities, the elderly, and the undocumented, may get care that was studied, tested, and developed, mostly for young white men. So as we endeavor to improve our understanding of human biology and disease, we have to make demonstrated efforts to enroll those science has historically forgotten.

Probing the human genome for the answers to medicine’s greatest questions will almost certainly lead to innovations and improvements in the health of our population. But as with most innovations, without careful and thoughtful execution, the impact may be limited. In Precision Medicine, we risk continued exclusion of certain populations from the benefits of science. This is when science fails, when it is unable to capture the breadth and meaning of the human experience. So if Precision Medicine does not couple its inquiry into DNA and disease with an equally rigorous examination of the biologic imprint of social stress, poverty, and discrimination, we may be no why-ser, than when we started.

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Is Civic Engagement the New Frontier of Physician Advocacy?

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We Can Do Better - Improving the Health of the American PeopleThe figure is simple. Health care plays, at best, a minor, and at worst, a relatively inconsequential role in reducing early death in America.

That means, where people live and how they function in their local environment, potentially matters more to their long-term survival than what doctor they go to, or what medicines they are prescribed.

That is a powerful statement about a complex phenomenon – what happens in our communities impacts health in profound and lasting ways. So if health is predominantly determined by community-level factors,* perhaps we should re-design the traditional medical model to place community at the center of health care.

This idea isn’t new, and is probably why Dr. Steven Schroeder aptly titled the article from which this graph was taken, We Can Do Better. One look at the data and it is obvious more can and should be done to address the social, economic, and political drivers of health in this country. But the question of who and how somehow remains.

For many physicians, taking on structural inequality may seem overwhelming or outside their job description. Common retorts I hear are, “This is a social workers job.” Or “This sounds good in theory, but how would it work in practice?” To the first point, the evolution I am alluding to is a systems-wide change in the practice of medicine, such that the way we conceptualize medical care draws upon the skills of an interdisciplinary team of practitioners charged with addressing social determinants of health. So while this vision certainly includes social workers (and public health departments, local government, social service agencies, etc) it also necessarily includes physicians.

To the second point, there is a long history of community-oriented primary care (COPC) theory and practice. It dates back to the 1940s, and the work of giants like Sydney Kark, who created a model of government-funded, community-based, preventative care delivery in South Africa; and Jack Geiger who directed 2 exemplary, community health centers in the Mississippi Delta and Boston, MA in the 1960s. Dr. Geiger’s integrated clinics were the first of their kind and used government funding to pay for community-level health issues, like hunger and housing. Today, there are over 1200 such clinics nationwide serving an estimated 20 million Americans, or 5% of the US population, annually. These clinics are the backbone of the national safety net and the front lines of the medical response to growing inequality.

But as the issues of poverty begin to knock on all of our clinic doors, we can no longer afford to ascribe to the notion that this is the niche work of a minority of physicians.

So where do we begin?

The ballot box.

Data suggests physicians have a relatively low rate of civic participation as compared with professional peers like lawyers and the general population. As local policy informs local resources, the ballot box is the space where physicians find voice to address the pressing needs of our communities, needs that have an undeniable impact on this nation’s health.

The future of medicine requires physicians confront the impacts of concentrated poverty, a tiered education system with gaps big enough for entire communities to fall through, immigration and population displacement, and racial and gender discrimination, among other indicators of health. Still, the traditional physician role and our current training paradigms largely ignore these modern threats to health and wellness. So in the absence of a clear system-wide charge, vote in a way that makes a difference.

If community health centers are the backbone of the social safety net, voting is the backbone of physician advocacy.

Civic participation is the new frontier for physicians to combat the effects of poverty and inequality on health in enduring ways. It is how we can reach beyond the limits of our clinical role to engage the issues that matter to our patients and our communities.

Visit Vote411.org to find a polling place near you, trouble shoot election-day problems, and find a state-specific voter guides.

Definitions used in this piece:

* Community-level factors are things like where you live, how safe your neighborhood is, if you have a park within walking distance of your house, or if the property values in your neighborhood are high enough that your local public school is well-funded and thus if you are of school-age, you are more likely to go to college as a result of living in that neighborhood. These community-level factors are intimately related to the choices people make or their “behavioral patterns” (as referred to in the pie chart above). For example, if your neighborhood is relatively safe and there is a park within walking distance of your house, you may be more likely raise your child in a lifestyle that promotes and values physical activity, a known method to prevent obesity. Conversely, if you live in a neighborhood that does not have a grocery store that sells affordable fresh produce, you may be more likely to eat processed food, and more likely to battle obesity and related health conditions.

For more on how community level factors or structural inequality affects health, check out my piece on structural inequality here. If you are an educator thinking about teaching these topics, check out my piece on teaching structural inequality here. This piece also includes the syllabus and reference guide I use when teaching on this topic.

Walking the Talk

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I’m back!

After a 3 month hiatus from writing, I’m back! And although things went radio silent on my blog, I’ve been busy working on projects that I am excited to share with you guys! But first, let me tell you why I took a break.

For those of us who think critically about the delicate social safety net that is fraying under mounting pressures of growing inequality and finite public resources, it is clear that more than thoughtful rhetoric is required to bear this heavy load. It is also clear that there are new opportunities for the healthcare industry to unite with the social sector to address the most egregious impacts of poverty in our society – death and disease. So while I took some time away from talking the talk on here, it is in part because I found new opportunities to walk this walk in my professional life.

Now, I’m back, and with new experiences that will hopefully inform our conversation on this blog. So look forward to new posts as I continue to think about the intersections of race, gender, social inequity, structural inequality and health in our society and ponder aloud how we might address these issues together, through our unique work.

Here are the questions that will drive my next posts:

1. Is worse care better than no care? Do new models of care trialed by pharmacies (think CVS, Walgreen’s) and internet giants (think Google and Facebook) suggest access is more important than quality? How should what we know about quality drive how we provide care across the medical infrastructure?

2. How can technology bridge the gap between the healthcare and social sectors, as we both endeavor to address the impacts of poverty on society? This question is intimately related to a question I frequently ask on this blog: If patients bring doctors their social needs and doctors know those needs impact their health, what is the physician’s role in addressing social needs?

3. Cultural Competence vs Cultural Consciousness. What is the correct framework for understanding and addressing health disparities? How should we teach physicians and trainees to engage their unconscious bias in clinical encounters such that all patients receive and perceive quality care, regardless of their “cultural” background?

Okay, those are a few teasers to tide you over for now 😉 And if you have other topics you’d like me to address, please leave a comment and I will do my best to include them in upcoming pieces. Looking forward to walking the talk together!

Until then, be well!

Rhea

Structural Inequality and the Future of Medicine

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4 weeks ago, I published an article on Kevin.MD that garnered a lot of attention. It was titled The Myth of the Entitled Single Mother Remains as Relevant as Ever.* In it, I reversed the popularized notion that single mothers are a societal liability and suggested that instead, they are powerful forces in our local economies and influential leaders of future generations. I presented the idea that how society thinks about single mothers affects how we fiscally prioritize their needs. The point was, stigmatizing public rhetoric informs pubic policy in ways that perpetuate inequality and contribute to poor health. In response, however, I received a number of comments, many from other physicians, suggesting that such a topic was not “medical” enough to warrant physician concern.

That sentiment sits at the crux of one of the most contentious debates in medicine and frames one of the most important questions facing clinicians today. If inequality drives poor health, what is the physician’s role in addressing the structural forces in society that perpetuate inequality?

To answer this question, we must first unpack the ways enduring public narratives inform our institutions and shape opportunities in America. We must talk about how structural forces in society can align to create predictable patterns of disenfranchisement, including inter-generational poverty and poor health. Let’s get started!

The archetypes society erects to distinguish populations, commonly by race, gender, socioeconomic, marital, or immigration status, are not simple social tropes that define broad categorizations of people. Over time, and historically in fact, these social constructs lay deep roots in the political processes that govern society, processes that in turn, inform many of the institutions on which society relies, including the justice system, the education system, and the public health system. This pattern of influence is problematic because it allows shared public stereotypes to drive major public policy. This institutionalizes bias and creates inequality. And as we know, inequality drives poor health.

Let’s take one example of this and flesh it out. Look at the effect of race and gender on incarceration rates in America and the associated health consequences.

African-Americans make up 13.1% of the US population and yet African-American males alone, make up 38% of those incarcerated in federal and state prisons today. That means Black males are 6 times more likely to be incarcerated than White males and if these trends continue, 1 in 3 Black males will be imprisoned at some point in their lifetime.

The origin of the stark racial disparities in the US criminal justice system is complex and multifactorial. It is, in part, related to the disproportionately high rates of poverty,** unemployment, and low educational attainment in African-American communities. But it is also driven by a public narrative that associates Black males with criminality. That is why, even when you control for the crime rate, Black males are more likely to be arrested, once arrested, more likely to be convicted, and once convicted, more likely to face longer prison sentences than their White peers. This criminalization of African-American males is far from benign and, in fact, may have adverse health consequences for Black children and Black families.

When 1 in 3 African-American males are projected to be removed from their communities, often at the age of greatest productivity, it has profound effects on the communities in which these men live.*** Without their earning potential, these families disproportionately rely on the income of single mothers, many of whom live on the brink of poverty.**** Children who live in poverty are more likely to have poor health as adults, including increased risk for cardiovascular disease, high blood pressure, diabetes, arthritis, and depression. What is more, there is evidence to suggest that these risks persist, despite changing social class in adulthood. That means, there are physiologic pathways whereby systems of inequality and social stress may act to create immutable changes to children’s bodies, affecting everything from their brain development to their DNA. These changes can potentially be passed down to future generations, allowing under-resourced social environments to create predictable patterns of disease.

When considered in this way, it is easy to see how shared public narratives can become entangled in policies that systematically disenfranchise families and communities, dismissing productive members of society, shaping local economic opportunities, and informing the health of our future generations. When the life expectancy of a child can be predicted by the zip code in which they live, it exposes important drivers of health and disease in America. As physicians, we must dissect the threads that connect sociopolitical environments to biological consequences. If that is not “medical” enough to warrant our concern, I don’t know what is.

This is the future of medicine and it requires physicians confront issues of stigma and inequality as a function of their clinical duty to promote health and wellness. Doing so will certainly be a challenge. Success will rely on our ability to understand the impact social, political, and economic environments have on the population’s health and, to systematically incorporate this framework into the canon of medical scholarship and medical education. From there, we will need to build interdisciplinary models that bridge political action with health impacts. Jonathan Metzl and Helena Hansen have mapped a way to do that in their article entitled, “Structural Competency: theorizing a new medical engagement with stigma and inequality.” There is much to do be done. Let’s get to work!

Footnotes:

* Kevin.MD. is an online medical publication. You can also find this article on my site here!

** Communities in poverty have higher rates of crime regardless of racial composition.

*** This lends a new urgency to addressing the national gender wage gap, a gap that is wider for women of color, as communities of color may disproportionately rely on the income of women. It also underscores the importance of creating pipelines to higher education for men and women of color, to both supplant the pipeline to prison and to position women of color to occupy leadership roles in the community.

**** Many states also legally revoke prior felon’s voting rights and increasingly, laws and policies are being enacted to limit prior felon’s ability to: obtain employment, receive government benefits like food stamps, access public housing, or qualify for student loans. This results in 1 in 13 African-Americans no longer being able to vote today and prevents countless others from making meaningful contributions to their families and communities.