The Promise and Challenges of Data-Driven Healthcare

May 6, 2014
General Foundation

The human body is a data-making machine. Every heartbeat, every breath and every gene tells a story of a person, which is what guides how medical professionals diagnose and treat health problems. Today’s computer processing power and massive stores of digitized information make it possible to mine all these human data points for insights that can drive innovative approaches to treating the ills that plague our bodies. The excitement over healthcare Big Data is not just about improving length and quality of life; there are also big potential economic benefits. The current healthcare analytics market is worth $3.7 billion, expected to grow $10.8 billion by 2017, according to a report from MarketsandMarkets.

As President of Entropy Economics and former U.S. Chamber Foundation Fellow Bret Swanson writes:

“A deluge of patient data is coming our way, and it will transform the drug discovery, personalized medicine, and self-diagnostics. When smartphones can sense and relay real-time biometrics, and with more fine-grained information from patients, genetic databases, and research trials, Big Data tools will radically speed the medical innovation process, delivering breakthrough discoveries and customized treatments.”

For years, pharmaceutical companies have compiled massive databases with research data, providers have shifted towards digital records, and public stakeholders have begun sharing data from clinical trials and public insurance programs. When all this data is brought together, it creates an enormous bank of information from which innovative and improved healthcare approaches can be extracted. The HealthMap project, for example, analyzes data from formal organizations (such as health departments) and informal sources (like social media) to detect viral or bacterial outbreaks, providing an early warning that can be used to head-off a growing contagion. Michael Harden writes in Wired that “in the real world, healthcare Big Data will let us watch flu outbreaks bloom and direct scarce vaccines to the most critical areas. We can catch exotic outbreaks before they spread and days before any savvy doc manages to call in to alert the CDC.”

This bringing together of disparate data sources is the key to unlocking the potential in healthcare data. According to Marc Perlman, the Global Vice President of Healthcare and Life Sciences for Oracle, the path towards “care coordination, best clinical practices, and personalized medicine” rests on data integration. And it is not just about finding the serendipitous insight amidst troves of data. Integrated patient data makes possible the kind of informed, coordinated care that can maximize the knowledge and expertise of different healthcare providers.

Take the case of NuMedii, a startup that emerged from a biomedical informatics research lab at Stanford University. The new company “gathers billions of biological, pharmacological and clinical data points from public repositories…cleans them up, annotates them, and puts them into a usable format.” 

That information is then used to generate algorithms that pair existing drug compounds with potential applications. Given the data-based approach to developing pharmaceutical treatments (which in the past had been more of a trial and error process), NuMedii is working with Aptalis Pharma, a pharmaceutical company that creates therapies for cystic fibrosis and gastrointestinal disorders.

As well as compiling patient, pharmaceutical and government information, Big Data healthcare is driving new technologies that monitor and record the massive amounts of data our bodies constantly generate. This consumer-generated health data is an important element in improving healthcare, but it is also creating market space for new businesses. For example, the First Warning System smart bra can detect breast cancer with a reported 90% accuracy rate, and the Dash smart headphones monitor vital signs (while also playing music). 

Big Data healthcare also provides the foundation for a more collaborative approach to treating or even curing diseases. Sharing knowledge, ideas and data allows the healthcare industry to “crowdsource analytics solutions,” says Manish Gupta, Vice President and Director of the Xerox Research Centre India. If two heads are better than one, how much more effective and groundbreaking could healthcare become if thousands of doctors, researchers and businesses across the world attacked the same persistent healthcare challenges? The potential in healthcare data is huge, but that’s not to say that it is without challenges.

 

Hurdles on the Road to Healthcare Innovation

Even as healthcare data holds keys to some of the most important and desired innovations and breakthroughs, there are challenges to realizing data’s full potential. One such challenge is interoperability. In the healthcare industry, there is no common data framework, no standard rules for how patient information is recorded, stored and shared, which makes it difficult to create consistent, aggregated datasets. Katherine Kim writes in a report for the California HealthCare Foundation:

“Patient records typically are accumulations of interactions between providers, patients, insurance companies, and government agencies. The data they contain are uncategorized and full of personalized text descriptions and images. Not surprisingly, clinical data standards are sometimes viewed as a complex ‘alphabet soup’ of different vocabularies and obscure technical details.”

Another challenge is talent (which holds true for all industries working with data). The world needs more data scientists capable of working with all this information, bringing it together, standardizing the format, and developing the algorithms that can extract innovative insights. Cultivating this talent cannot be done overnight; universities are one major source of new technical talent, and it takes time to develop cohorts of data experts.

There are also legitimate concerns about patient privacy. Personal health and wellness is the most sensitive data, and patients and providers alike harbor concerns about whether personal data can be safely shared with the broader healthcare industry. Dr. Dan Riskin, CEO of Health Fidelity, calls this a political challenge at the national and local level. Yet, it is more than that. There are numerous questions about how to reap the rewards of Big Data while also protecting individual privacy on some of the most sensitive issues (i.e., personal health).

Yet, perhaps the threat to privacy is not as dire as the concerned public might assume. As Alan Charles Raul writes in Politico, “The present legal regime is quintessentially capable of adapting and turning on a dime to detect, deter and penalize bad data behavior. And, the current laws and regulators are…capable of protecting the public without over-deterring innovation.”

The issue of privacy and the FTC's role will be a topic of discussion at this week’s FTC workshop, "Consumer Generated and Controlled Health Data." These kind of public discussions advance important ideas and debates about how to unlock the potential in aggregated, accessible healthcare data. This is still an emerging field with new questions coming as fast as new technologies. Yet, the opportunity to dramatically advance our capacity to provide effective, comprehensive healthcare, as well as develop treatments for ailments that have long plagued human beings, is not one we can afford to miss. You never know. Your life might depend on it.