How to Solve the Healthcare Data Conundrum

Moving Toward Better Data Sharing in Healthcare

But we need to do better. We waste an estimated 30 cents of every healthcare dollar. Eighteen percent of U.S. gross domestic product goes to healthcare — more than $12,300 per person per year — which is more than twice the average for member countries of the Organization for Economic Cooperation and Development (Germany comes in a distant second, at $7,300 a year per person).

Several of the big sources of that waste — failure of care delivery, failure of care coordination, overtreatment or low-value care, and fraud and abuse — clamor for better data sharing, not only of patient data, but also of machine data and process data.

The barriers to doing so are real, of course. Patients are rightly wary of detailed health information being hacked or used in discriminatory ways. Elsewhere, healthcare businesses rightly view data as deserving particular protection. Laws protecting health-related and other data (such as HIPAA in the U.S.) place limits on what providers, insurers and others can share and how patient consent is obtained.

Yet patients seem willing to trade their health information for better care. A recent survey showed 81 percent supported better access to health information for patients and providers. A different survey showed their enthusiasm varies depending on whom they’re sharing it with: from 72 percent for physicians to 53 percent for health insurers, 25 percent for health technology companies and just 11 percent for tech companies.

DISCOVER: How technology helps identify and track social determinants of health data.

The Real Benefits of Sharing Data Across Healthcare Players

Health tech and tech companies, however, will be indispensable to solving the data sharing conundrum. So, we must clearly communicate how data sharing can fundamentally improve the quality and efficiency of healthcare, and that combining data sources and boosting the volume and diversity of shared data boosts the scientific value of that data exponentially for patients, businesses and the overall healthcare landscape.

These synergies can manifest through the controlled sharing of data that today is generally sealed up in the silos of payors, regulators, public health institutions, pharmaceutical companies, wholesale drug distributors, retail pharmacies, providers and, yes, patient records.

Each has data the others could make good use of for their own purposes and for broader benefit. Payors’ aggregated claim and payment data might combine with wholesale pharmaceutical distributor data to better grasp prescription patterns and spot incipient treatment trends, perhaps also serving as an early warning for public health officials. The longitudinal patient data that providers maintain could feed more efficiently into drug development and public health efforts or offer evidence of adverse drug reactions or interactions of value to both regulators and researchers. Add machine learning and artificial intelligence to the mix and one can imagine correlating patterns in data that could help demonstrate the efficacy of various treatment modalities — or even suggest new ones — in a fraction of the time of today’s clinical studies.

On the business side, harnessing a broader spectrum of data will open doors to new business models. One example is the wider introduction of subscription- or outcome-based pricing to supplant prevailing fee-for-service approaches while providing more tailored individual care. That requires data from which to project likely patient numbers and their health status, drug and therapy costs, outcomes and payor reimbursement, among other factors.

The True Conundrum of Data Sharing in Healthcare

There will be hurdles to moving healthcare toward the degrees of digitalization and data sharing that’s happening in, for example, the automotive industry.

The biggest challenge has to do with the data sharing/data security and privacy conundrum. Its solutions must address complex ethical, competitive and regulatory issues. Governments may need to incentivize the private sector. We must help patients understand how they benefit personally and see the big-picture societal advantages; among them, cost savings through better aggregate health outcomes, greater efficiency across the system and far less waste.

The way forward will involve the federalization of data through decentralized data stores linked through metadata. Having many ponds and lakes rather than a single ocean limits access and, thus, the damage potential that misuse or even a security breach could do. But at the same time, this architecture lets diverse healthcare players with proper credentials assemble the combinations of data they need to gain efficiencies, evaluate and improve upon best practices, vet new ideas and improve care.

The path we must take to fundamentally improve the quality of care and efficiency of the healthcare system is clear. The conundrum surrounding healthcare data now is about how to motivate various players to get to work on sharing data in a responsible and ethical manner and how to enlighten patients about what they – what all of us – have to gain.

At the same time, we must persevere in our efforts to win over those who either choose not to share or are not willing, capable or interested in engaging with the digital and data economy.

UP NEXT: Why should healthcare organizations hire a data quality manager?