Picture your Netflix homescreen. Besides some errant selections courtesy of your (ahem, tasteless) roommate, it’s pretty much a haven of your unique preferences. Like a doting butler, it recommends you watch “Breaking Bad” since you enthusiastically plowed through every episode of “Orange is the New Black.” Netflix knows you. Or think about Amazon. It’s your data-powered best friend. It recalls your purchase history and movie preferences better than you do. So what if this data-powered framework for knowing you is applied to healthcare? What if your doctor knows you as well as Netflix?

That’s what the Precision Medicine Initiative aims to do–unleash the full power of science and data to make our healthcare system better, more effective, and more specific to individuals and conditions. The new model proposes a system of health care that treats you like the complex human being you are. Just as Amazon cares deeply about your past purchase behavior, the new healthcare system would care about the science-based reasons you’re you: your genes, your lifestyle, and your environment. Instead of pushing purchases, it would use what it knows about you to determine what treatments and preventions work best for your health.

President Barack Obama announced the Precision Medicine Initiative during his 2015 State of the Union Address and since then people have been discussing the pros, cons, and implications. Here’s an overview of precision medicine and what it means for you.

What is precision medicine?

Take a look at the video below for a summary of precision medicine from Jo Handelsman, Associate Director for Science at the White House.

Precision medicine revolves around you. It uses your genes, environment, and lifestyle to determine what treatments keep you healthy.

The Precision Medicine Initiative may be new, but precision medicine has some history. Doctors already use it to treat conditions like cancer and Cystic Fibrosis. Examples of precision medicine in action include processes like blood typing and medications like Imatinib (Gleevec), a drug for Leukemia that inhibits an enzyme produced by certain genes. The new initiative plans to expand the reach of precision medicine to to tackle other diseases.

The plan stems from a  2011 report from the National Academy of Sciences. The report called out a major healthcare weakness: data suggests possible causes of deadly diseases, yet we don’t treat people until telltale signs and symptoms surface. You don’t wait until your friend’s liver is wrecked to stage an alcoholism intervention. Why wait for symptoms of a deadly disease when early risk factors might be available?

Great idea in theory, right? Of course, the execution promises far more complexity. Experts hope that precision medicine is within our grasp now because of recent scientific advances that make it easier to collect and analyze patient data.

Advances That Make Precision Medicine Possible

Advancement 1: New Methods of Uncovering Biological Data

It’s easier to understand patients and tumors on a cellular and genetic level more than ever before because of things like:

• The Human Genome Project, an initiative that aims to map the DNA sequence of the human genome to determine a sort of biological instruction manual for how humans function. The study of the genome is called genomics.
• Proteomics, a discipline that involves studying proteomes, the entire system of proteins in an organism. The goal is understanding changes, variations, and modifications in proteins over time to determine biomarkers for human diseases, especially cancer.
• Metabolomics, a field that leverages analytical tools to discover and quantify metabolites, which are substances produced by metabolism. Studying them provides experts with a glimpse of an organism’s physiological functioning as metabolism is a huge factor in overall health.

Advancement 2: New Tools For Biomedical Analysis

New analytic tools make it possible to decipher the intricate medical data collected by the disciplines above. Computers and programs help to collect, store, and study biological and medical information. Overall, the discipline is called bioinformatics.

Advancement 3: New Digital Health Tools That Make Large Datasets Manageable

I said large data sets. Sound familiar? Yes, we’re talking Big Data. You’ve probably heard enough about it, but it’s actually an amazing thing, especially when applied to healthcare. Take a look at the video below for more information.

From collecting to analyzing, sophisticated data management tools make the Precision Medicine Initiative possible.

Collectively, these advances create the right environment for the unified national effort that the Precision Medicine Initiative proposes.

How will it work?

The President’s 2016 Budget provides $215 million for the program. Four key agencies slated to do a bulk of the work each get a chunk of the budget.

National Institutes of Health (NIH)

Project Budget: $130 million.

Task: Recruit a volunteer research cohort and leverage existing data.

The National Institutes of Health must find 1 million American volunteers willing to provide medical records, gene profiles, lifestyle data, and more. While data drives the initiative, you need people to get the data. In addition to this, the NIH will find existing studies and research to build a foundation for the initiative. It’ll collaborate with stakeholders to determine approaches for collecting patient information.

National Cancer Institute (NCI)

Budget: $70 million.

Task: Find better cancer treatments.

The National Cancer Institute will explore precision treatments for cancer by increasing genetically based cancer trials, researching cancer biology, and establishing a “cancer knowledge network” to inform treatment decisions.

Food and Drug Administration (FDA)

Budget: $10 million.

Task: Develop safe, new DNA tests.

The Food and Drug Administration will seek technologies that rapidly sequence DNA and the human genome. Tests should make genetic data collection easier and more standardized.

Office of the National Coordinator for Health Information Technology (ONC)

Budget: $5 million.

Task: Manage the data.

The ONC has a tough job. It needs to figure out how to store, use, access, and exchange all of this medical data without any privacy concerns.

What Precision Medicine Could Mean For You

Here’s Notre Dame’s video on precision medicine in action:

Precision medicine could mean treatments more specific to you. For example, about 55-65 percent of women with mutations in the BRCA1 gene get Breast Cancer; only 12 percent of those without the gene get it. If the gene mutation is discovered, doctors can recommend enhanced prevention measures like increased cancer screenings or prophylactic surgery to remove at-risk tissue.

We hope more precise treatments lead to better outcomes. Using precision medicine, we hope to answer many questions, including:

• How can we treat this better?
• Is there a cure?
• Why does this disease happen in the first place?

The Downsides to Precision Medicine

Of course, the Precision Medicine Initiative has some drawbacks. The sheer amount of time it will take to collect and analyze all of this patient data leads the charge of negative comments. Below are some other downsides.

Interpretability

This article from the New Yorker calls out the problem of interpretability. To quote the author,l Cynthia Graber,

Many doctors are simply not qualified to make sense of genetic tests, or to communicate the results accurately to their patients.

Since doctors will be the sole executors of the initiative, more need to become fluent in the human genetic code. Programs like MedSeq have recognized this need and are already working to make genetic information translatable for practitioners.

The Budget Just Isn’t Enough

Experts say that even the $215 million proposed isn’t enough to meet the initiative’s lofty goals, like recruiting one million patient volunteers. One upside? Money can be saved by incorporating existing data, which the initiative plans to do.

Collecting the Data is Going to be Hard (This is an Understatement) 

If they do save money by integrating data from different studies, keeping the data clean will be hard considering the different time frames, constructs, and controls of various studies.

And as a practicing doctor writing for a New York Times blog points out, the lifestyle factors will be especially hard to study because of some uncooperative and intensely complex patients.

Insurance Companies May Not Pay For It

Precise matching of individuals to disease treatments sounds great, and extremely expensive, especially in the early days. Patients will need even more help determining what treatments suit them.

Hope For the Future

Sorry to bring up Netflix up again, but let’s face it, it’s very good at leveraging data to give you what you want. Consider any of its popular original series. Do you think Netflix just guessed what 50 million subscribers would like? Probably not. It used its massive stores of data to make informed decisions.

Early doctors and researchers puzzled over the symptoms of just a few patients, trying to find patterns, causes, and cures. While they did a fair job with the resources they had, trial and error medicine should be relegated to the less fortunate past. Today we have the power and knowledge to access data that helps doctors make more informed decisions on healthcare treatments.

Precision medicine will be complicated, difficult, time consuming, and who knows what else. But imagine what we can learn. We should be cautious, but we can also dare to hope.

Resources

Primary

White House: Infographic: The Precision Medicine Initiative

White House: FACT SHEET: President Obama’s Precision Medicine Initiative

White House: Precision Medicine is Already Working to Cure Americans: These Are Their Stories

National Cancer Institute: BRCA1 and BRCA2: Cancer Risk and Genetic Testing

National Institutes of Health: Precision Medicine Initiative

National Cancer Institute: What is Cancer Proteomics?

Additional

Nature: Obama to Seek $215 Million for Precision-Medicine Plan

New England Journal of Medicine: A New Initiative on Precision Medicine

National Academies: Toward Precision Medicine

National Institutes of Health: Precision Medicine Initiative

Nature: U.S. Precision-Medicine Proposal Sparks Questions

Brookings Institution: The Significance of President Obama’s Precision Medicine Initiative

New Yorker: The Problem With Precision Medicine

The New York Times: A Path For Precision Medicine

National Human Genome Research Institute: What is the Human Genome Project?

BioTechniques: What is Metabolomics All About?

Bioplanet: What is Bioinformatics?

Ashley Bell

Ashley Bell communicates about health and wellness every day as a non-profit Program Manager. She has a Bachelor’s degree in Business and Economics from the College of William and Mary, and loves to investigate what changes in healthy policy and research might mean for the future. Contact Ashley at staff@LawStreetMedia.com.

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