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Since 1990, the Society for Women’s Health Research (SWHR®) has been advocating for innovation in women’s healthcare. The organization is on the cutting edge of the newest research trends, and each year SWHR picks a different theme to highlight at its annual gala. At this year’s event, one message rang loud and true: we’re officially in the age of big data. Almost everything we do–from voting choices, to commercial purchases, to Netflix binge-watching, can be recorded and analyzed to glean patterns. But the incorporation of big data into healthcare is particularly exciting, and promises to revolutionize medical treatment for women. Read on for a sampling of how we’re now integrating big data into patient treatments, and what it means for women’s health.

Big Data & Women’s Health

First Things First: What exactly is big data?

It’s a fair question. We hear the term thrown around a lot, but there’s certainly no cut and dry definition. Essentially, big data is the collection and use of large amounts of information that are naturally generated from our everyday activities. Big data and healthcare can include things like our use of smartphones (and other technology like FitBit or the Apple Watch) to track our fitness levels, the prescriptions we are given, the information generated by clinical trials, the analysis of our genetic material, and so much more.

So how can big data affect women’s health?

It’s no secret that there are sex differences in health. Medical research has only recently begun to recognize these differences and incorporate them into the diagnosis and treatment of illnesses. While our understanding of sex differences and how they affect health have improved, discoveries are still being made about the different ways that certain diseases and treatments affect women. The ability to collect data and pinpoint patterns specifically for women will help inform how to treat them moving forward.

Big Data in Action 

Take for example, a project at Baystate Medical Center, in Massachusetts–the Breast Cancer Registry. Researchers there are creating a large database based on data collected from 400 women who have had breast cancer. The data will help the researchers find patterns in how different women respond to treatments, by acknowledging factors like genetics, age, weight, lifestyle, and other aspects of health. According to Dr. Grace Makari-Judson, chair of the Baystate Health Breast Network and co-director of the Rays of Hope Center for Breast Cancer Research:

What’s nice about the experience with the registry, we have a diverse group of individuals participating and they aren’t the highly selected people in clinical trial. You get more meaningful data (looking at) what is the use of this drug like in the general population.

The inclusion of women (especially minority women) into clinical trials has been a long fought battle, so the ability to collect and analyze this kind of data in the real world is invaluable.

Electronic Health Records 

Electronic health records are another innovative way to use the data already at our disposal. To many, it probably seems archaic that until recently, almost all of our medical information was kept in file folders. We now have the technology to process and incorporate massive amounts of data on patients–from childhood illnesses and injuries to family histories and genetic information.

As electronic health records start being implemented, evidence has begun to show that these records help doctors more effectively manage women’s health. A report in the Journal of the Medical Informatics Association showed that the presence of electronic health records make it more likely that doctors order essential tests like pap smears and breast exams for their female patients–leading to an overall positive impact on women’s health.

Examples of Individual Applications

Genomics

Genomics is the practice of mapping an individual’s genetic material. It’s a data-intensive process that requires serious computing power. Genomics can help provide patients with a predictive and more individual picture of their health. For women, one of the most visible developments in the field of genomics is the ability to test BRCA1 and BRCA2. Certain genetic mutations in those genes greatly increase the risk of ovarian and breast cancer. According to the National Cancer Institute:

Together, BRCA1 and BRCA2 mutations account for about 20 to 25 percent of hereditary breast cancers and about 5 to 10 percent of all breast cancers. In addition, mutations in BRCA1 and BRCA2 account for around 15 percent of ovarian cancers overall. Breast and ovarian cancers associated with BRCA1 and BRCA2 mutations tend to develop at younger ages than their nonhereditary counterparts.

In cases where BRCA1 and BRCA2 mutations exist, steps like enhanced screening, chemoprevention (the use of drugs to reduce the likelihood of or delay the onset of cancer), or preventative surgery might be considered. For example, actress and filmmaker Angelina Jolie tested positive for a BRCA1 mutation, and as a result chose to get a double mastectomy in 2013.

Precision Medicine

Precision medicine is an exciting new development that ties a lot of the tenets of big data together. Precision medicine uses big data, as well as other tools like genomics, to create more individualized treatment for patients. The Obama Administration has spearheaded the precision medicine initiative, and explains the aim in a press release:

The future of precision medicine will enable health care providers to tailor treatment and prevention strategies to people’s unique characteristics, including their genome sequence, microbiome composition, health history, lifestyle, and diet. To get there, we need to incorporate many different types of data, from metabolomics (the chemicals in the body at a certain point in time), the microbiome (the collection of microorganisms in or on the body), and data about the patient collected by health care providers and the patients themselves. Success will require that health data is portable, that it can be easily shared between providers, researchers, and most importantly, patients and research participants.

Conclusion

The expanded use of data in healthcare is the future, and the developments that we’re seeing in the present are already incredibly exciting. As SWHR puts it:

Data initiatives are revolutionizing healthcare and helping to improve every aspect of medicine, from bench to bedside. This data, which is being collected and utilized by healthcare providers, pharmaceutical and medical device companies, insurance companies, hospitals, and researchers, provides a wealth of healthcare information that can be used to better inform healthcare decisions and delivery for every woman.

Resources

Primary

SWHR: SWHR’s 26th Annual Gala: “Revolutionizing Healthcare & Research Through Data”

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

The White House: The Precision Medicine Initiative

Additional

Law Street Media: Precision Medicine: The Future of Health Care?

CB Insights: 13 Startups Working in Women’s Reproductive Health

Forbes: How Big Data is Changing Healthcare

Boston Business Journal: Focus on Women’s Health: Big Data, Registries Help Docs Understand Cancer

Radar: Genomics and the Role of Big Data in Personalizing the Healthcare Experience

New York Times: Angelina Jolie; My Medical Choice

Modern Healthcare: EHR Use Tied to More Women’s Health Tests: Study

Society for Women’s Health Research

The Society for Women’s Health Research (SWHR®), is a national non-profit based in Washington D.C. that is widely recognized as the thought-leader in promoting research on biological differences in disease. SWHR is dedicated to transforming women’s health through science, advocacy, and education. Founded in 1990 by a group of physicians, medical researchers and health advocates, SWHR aims to bring attention to the variety of diseases and conditions that disproportionately or predominately affect women. For more information, please visit www.swhr.org. Follow us on Twitter at @SWHR. SWHR is a partner of Law Street Creative. The opinions expressed in this author’s articles do not necessarily reflect the views of Law Street.

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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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