We haven’t reached the promised land of open access to data, but we are on our way to a more personalized future of care.
Individuals and organizations now hold more data than ever before, according to Stanford’s second annual health trends report.
Healthcare is democratizing — it is becoming more accessible to people. And the democratization is characterized by two major factors, the distribution of data and the ability to generate and apply insights at scale. This gives patients the opportunity to use their data, technology and access of expertise to take charge of their own well-being and manage their own health.
Data are growing and flowing across our healthcare systems faster than ever. Where healthcare used to operate as closed, siloed institutions with the research hospital at the hub, causing the flow of information to simply go from expert to patient, the digitization of patient health records has allowed data to flow more freely.
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With the access to their data, patients are engaged with more forms of information sharing.
Patients are now using wearable technology like smartwatches to monitor and manage their health. While in the past, the data were just flowing from expert to patient, now there are more information-sharing relationships — one-to-many, many-to-one and many-to-any.
“This transformation puts the patient at the center, encouraging the spread of medical knowledge in unprecedented ways,” the authors from Stanford University School of Medicine wrote.
Ninety-three percent of hospitals and health systems enable patients to access their health data, interact with health data and obtain health services.
As the growth and spread of data have generated more information than any one person could interpret, breakthroughs in artificial intelligence (AI) have helped overcome this challenge. Medical experts are training algorithms to analyze vast quantities of data and extract insights.
These algorithms are more efficient due to the increase of data, which could improve predictive capabilities, enable greater personalization and democratize access to enhanced care.
Through these developments, heavyweight tech firms are more attracted to the healthcare sector.
Apple reported that 142 healthcare institutions share medical records data with their Health app and Alphabet, Microsoft and Apple filed more than 300 healthcare patents between 2013 and 2017.
But in order for healthcare to truly democratize, information needs to flow even more freely than it is currently.
The authors cite interoperability as the biggest hurdle to achieve free-flowing information.
Without a central, shared database to reference all, or at least the majority, of healthcare data around a specific issue or patient, physicians are limited in the quality of care they can deliver to their patients.
Less than 30 percent of U.S. hospitals were able to meet the four key metrics necessary for interoperability: data integration, reception, distribution and funding. But interoperability could be increased with application programming interface technology that could help standardize the way applications interact and access data from one another.
Of course with more data in motion, the higher the risk of data breaches and privacy issues.
The fluidity of health data would mean health systems need to keep their security practices tighter than ever.
And while democratization could lead to more innovations with AI and machine learning, collaboration between tech companies and healthcare organizations could build more trust between physicians and patients, it is important to recognize that there are plenty of obstacles that will be met if data continue to democratize and be shared.
Physician burnout is already sweeping across the health sector, and increasing the use of electronic health records and inputting data may increase the burden.
Most patients don’t want their data being used for research purposes, and the health industry does not have explicit permissions or anonymization processes. Data also require thorough cleaning and structure alignment to be shared and referenced between systems, and there are not enough processes to ensure this gets done.
“… We haven’t yet reached the promised land of digitally enabled healthcare and open access to data,” said Lloyd B. Minor, M.D., Dean of Stanford University School of Medicine. “… But we are undoubtedly on our way to a future of care that is more predictive, preventive and personalized.”
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