Huge data can help make Americans healthier, and the Trump administration – in its chest recently mentioned Make America healthy report again Elsewhere-the building of the National National Residence Platform is one of its main goals.
As scientists who use large health data collections, we are excited about their capabilities and the federal government’s willingness to invest in it, especially since the huge data was Indisputable In the United States, compared to other developed countries – and since the number of methods that can be used is almost daily. It is a great opportunity.
But there are a lot of concerns when collecting sensitive health data and combining them last Sensitive data, such as credit grades, tax records, employment, educational records, and more.
Some of these concerns have already appeared in the management plans. Management The first goal From the collection of the large data to study autism, it has left some anxiety that if it is used inappropriately, such data It can lead to harmInstead of help, for those with autism.
Others worry that large data can be used to perform and justify bad research that supports pre -defined conclusions without adhering to strict scientific method quote Sources are not present to support their claims.
How can we reap the benefits of big data while reducing its risks? Here are some guidelines:
1. Linking severe health care and government data already
The healthcare system already has health data on millions of Americans. Medical records are always numbered, allowing doctors ’observations, medical imaging, laboratory tests, insurance demands, and more to be linked (in theory) through the offices of doctors and hospitals, the homes of the elderly and any other place where people receive care. However, the data collected about the patient in one preparation often is not connected to the data from other settings – which makes it difficult for researchers to obtain a complete picture of what exactly happens to each of us in the larger health care system.
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The federal government also has data that can be related to health care data to answer important questions. For example, comprehensive and detailed data on the occupations of Americans related to health and insurance and other data can help shed more light on the relationships between our work and our health – to answer better to strange questions such as why Taxi drivers Less likely to die than Alzheimer’s disease or why doctors The male colleagues do not exceed.
The first step to make big data more useful is simply linking data – which, although it is possible, is difficult to achieve without a central effort. Once the links are made, the data can be neglected so that those who study sensitive questions of secret information about certain individuals are not studying.
2. Create a capacity for researchers to securely connect to other valuable data
In addition to government data, many other data sources can provide an insight into our health. For example, smart watches do not contain data on how to hit our hearts (for example, they can Determine the abnormal heart rhythms Like atrial fibrillation), but they can also determine Hidden changes in mobility This may be a prediction of early muscle neurological diseases such as Parkinson’s disease.
Meanwhile, grocery stores contain data on the foods we eat, and with increasing interest in how the diet affects our lives, this data can be linked to detailed health measures.
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Likewise, social media platforms possess data that can provide an insight into our mental health changes, and through a wide range of online images, they can be determined, in actual time, signs of premature disease.
These are shots, of course, and whether we want to use data in this way is an open question. But the ability to improve health can be great. Create a way for scientists to link external data with existing governmental and health data – while Responsibly Keeping not disclosing his individual identity after linking – it can open many new search opportunities.
3. Invest in data research infrastructure
Keeping all data sources is organized and safe and scientists can be accessed for a long time. Researchers who use huge data often devote great resources to find the data they need, organize and ensure their accuracy; The better the database, the easier the researchers are already conducting their analyzes.
The secure statute has been accessed online where other government health care data has been accessed now The researchers described it As “boring and vulnerable to system errors” and in need of significant improvements. Meanwhile, the security concerns of the government prompted the government to stop allowing researchers to store data on their safe servers, which is the easiest and most cost -effective way to work already with data. Access to medical care data by researchers has become ExpensiveIt costs about $ 30,000 per year or more for one user to work in one project using the online platform.
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Suggestions for Cut Medical research financing has been reported, and if passed, these research financing discounts will come at the expense of discoveries to improve health that will never be done. High -quality research requires any type of investment, whether in a biology laboratory under a microscope or work with data on strong computers. The new data platform is valuable as researchers’ ability to access it in a functional and effective manner.
Any road map to design a national data platform linking health care with other sensitive data should consider many correct concerns about data collection in the United States, including privacy concerns and how to use data. The Pio Research Center finds this A large majority The Americans say they are concerned about how the government uses the data that are collected from them (71 %), while also recognizing that they do not have a significant understanding of what the government does even with this data (77 %).
Here are some strategies – in addition to many cybersecurity and privacy guarantees – to protect data and help the public confidence:
1. The strict level of access to data to the researchers who have been examined
Lack of confidence and discomfort in collecting government data can be tracked easily to the historical abuse of Americans’ data (as well as Recent allegations From improper access), so it is not surprising that many are cautious about the Trump administration plans. Perhaps a government weapon guarantee against individuals is the biggest obstacle to creating a useful database, but this can be done.
Those who currently use federal health care data He should He has already undergone training and compliance with very high data security standards. Data misuse – like even an attempt to discover an unknown individual identity in data – or failure to protect the patient’s privacy can lead to Criminal penalties.
A platform for sensitive data without good restrictions on those who can use it and what they can use it is a recipe for problems. Other continuous efforts by the administration to Collect data under the mysterious goal From “increasing government competence”, it has been met with decline and lawsuits from the relevant organizations regarding the data used against members of the public.
2. It requires analytical plans and approval on ethics in advance
The current use of federal health data also requires researchers to provide detailed plans for the government to justify the use of specific data. This allows the government to ensure that there is no more data than it is required to answer the specific question for researchers.
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Researchers must also obtain moral approval from the Institutional Review Council before accessing and analyzing data, a second checkpoint. These councils, which are found in light of the terrible failure of medical research ethics in twentyY Century, helped ensure the design of analyzes to reduce the risk of patients – even if their data, not their bodies, are in danger.
3. Emphasizing real transparency
Transparency can be generated in those who use this sensitive data and what they do exactly the confidence between researchers and the American audience. Just like researchers Really done for clinical trialsThose who reach the data platform must determine their plans in advance, and these plans should be easily available and publicly.
The transparency that has been accessed about data and what is the computer icon that has been used to analyze it not only enhances confidence, but like this Data sharing and symbol practices Among the researchers is easy to evaluate the quality of work, identify errors, and roots misconduct.
We can only assume that the emission of Americans with the use of government data stems from knowledge, as with all the strong tools, that the data associated has the ability to use it in possible harmful ways. But when in the hands of qualified scientists who use strict scientific methods and guaranteeing privacy, a strong data platform in the world like this can lead to new discoveries on how each of us leads a healthier life.
