Big Data can help make Americans healthier, and stated the Trump administration – in the recently released Make America Report Report And elsewhere-that the construction of a National Big-data platform is one of the most important goals.
As scientists who use large data sets to study health, we are enthusiastic about its potential and the willingness of the federal government to invest in it, especially because Big Data has been underhanded Compared to other developed countries in the US – and because the number of ways in which it can be used is growing almost daily. It is a huge opportunity.
But there are many worries in compiling sensitive health data and combining with this other Sensitive data, such as credit scores, tax data, employment, educational data and more.
Some of those concerns about the plans of the administration have already surfaced. The administration First goal From compiling Big Data to studying autism has been worried that such data is used as inappropriate, if it is used inappropriate Can lead to damageInstead of help, for people with autism.
Others are worried that Big Data could be used to conduct sloppy research and justify that predetermined conclusions without complying with rigorous scientific methods – strengthened concern by the discovery that the Make America Report has been re -reported quoted Non-existing sources to support her claims.
So how can we pick the benefits of big data while we minimize the risks? Here are some leading principles:
1. Links the very Siled Healthcare and Government Data that we already have
The healthcare system already has health data about millions of Americans. Medical files are now almost always digitized, so that doctors, medical imaging, laboratory tests, insurance claims and more can be linked (in theory) in doctors’ offices, hospitals, nursing homes and other place people receive care. However, data collected about a patient in one institution is often not connected to data from other institutions – making it difficult for researchers to get a complete picture of what exactly happens to us within the larger health care system.
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The federal government also has data about us that can be connected to data about health care to answer important questions. For example, extensive and detailed data on professions from Americans related to health care, insurance and other data can, for example, help to shed more light on relationships between our work and our health – to better answer curious questions, such as why taxi drivers are less likely to die from Alzheimer’s disease or why female doctors do not survive their male colleagues.
The first step to make big data more useful is to simply link the data – which, although possible, is difficult to reach without centralized effort. As soon as couplings have been closed, data can be made anonymous, so that those who study sensitive questions are not aware of confidential information about specific persons.
2. Create capacity for researchers to safely link to other valuable data
In addition to government data, many other data sources can provide insight into our health. For example, smartwatches do not only have data about how our hearts are correct (for example, they can Identify abnormal heart rhythms such as atrial fibrillation), but they can also identify subtle changes in mobility This can be predictive for early neuromuscular diseases such as Parkinson’s disease.
In the meantime, supermarkets have data about the food we eat, and with increasing interest in how diet influences our lives, this data can be linked to detailed health measures.
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Similarly, social media platforms have data that can provide insight into changes in our mental health, and due to large-scale analysis of online photos can even identify early visible markers of diseases in real-time visible markers.
These are of course Moonshots, and whether we want to use data in this way is an open question. But the potential to improve health can be great. Scientists create a way to link external data to existing government and health data – although responsible Maintaining individual anonymity after the link could open many new research options.
3. Invest in data research infrastructure
All these data sources organized, secured and accessible to scientists is a large order. Researchers who use Big Data often devote substantial resources to finding the data they need, organizing and ensuring that its accuracy is guaranteed; The better the database is maintained, the easier for researchers to actually perform their analyzes.
The secure online platform where Medicare and other data about the health care of the government are currently accessible described by researchers As “annoying and susceptible to system errors” and need for major improvements. In the meantime, the concern of safety have led the government to stop having the data stored on their own secure servers, the easiest and most cost -effective way to actually work with the data. Access to Medicare has become by researchers priceless durationcosts around $ 30,000 a year or more for a single user to work on one project using the online platform.
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Present to drastically cut Financing for medical research has been reported and if assumed, these cuts in the field of research financing will be at the expense of discoveries to improve the health that will never be made. High -quality research of any kind therefore requires investments, whether in a biology laboratory under a microscope or working with data about powerful computers. A new data platform is only as valuable as the ability of researchers to access it in a functional and cost -effective way.
Every route map for designing a national data platform that links health care and other sensitive data to each other must take into account the many valid concerns about collecting data in the US, including privacy problems and how data will be used. The Pew Research Center thinks that large majorities Of the Americans, they are concerned about how the government collects data about them (71%), while they also admit that they have little to no understanding of what the government even does with such data (77%).
Here are some strategies – with many of the existing cyber security and privacy protectors – to both protect the data and to earn public confidence:
1. Limit access to the data strictly to informed researchers
Distrust and unrest with collecting government data is easily traceable to historical abuse of Americans’ data (as well as Recent allegations From incorrect access), so it is not surprising that many are wary of the plans of the Trump government. Ensuring that data cannot be armed against individuals by the government is perhaps the biggest barrier for creating a useful database, but it can be done.
Those currently use federal health care data must Already training for training and meet very high data safety standards. Data abuse – such as even trying to find out the identity of an anonymous person in the data – or not protecting the patient’s privacy can lead to criminal penalties.
A platform of sensitive data without properly closed restrictions on who can use it and what they can use it is a recipe for problems. Other continuous efforts of the administration Compile data under the vague goal From the “increasing efficiency of the government” has been received with pushback and lawsuits of organizations that are concerned about data used against members of the public.
2. Require prior analytical plans and ethical board approval
The current use of federal health data also requires that researchers provide the government in detailed plans to justify the use of specific data. This enables the government to ensure that there is no more data than necessary to answer the specific question to researchers.
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Researchers must also obtain ethical approval from an institutional assessment council before they have access to and analyzes data, a second checkpoint. These plates that exist in the light of serious failures of medical research ethics in the 20one century, help ensure that analyzes are designed to minimize the risk for patients – even if it is only their data, and not their bodies, in danger.
3. Emphasize true transparency
Transparency in whom this sensitive data uses and what exactly they do with it can cause trust between researchers and the American public. Just like researchers already done for clinical examinationsThose who have access to the data platform must specify their plans in advance and those plans must be easily available and publicly available.
Transparency about which data was accessible and which computer code was used to analyze it, not only promote trust, but also such Practices for sharing data and code Among researchers make it easier to assess the quality of the work, identify errors and eradicate misconduct.
We can only assume that the unrest of Americans with data use from the government stems from knowledge that, as with all powerful tools, linked data can be used in potentially harmful ways. But in the hands of qualified scientists who use rigorous scientific methods and privacy protections, a robust data platform for the Real-World can lead to new discoveries about how we can all lead a healthier life.
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