The Future of Health Data Management – Enabling Trusted Research Environment

Scientists and researchers have greater access to data from health research, which allows them to discover new information about diseases and treatments that they may not have known about before. This data, based upon genomic markers, is crucial for medicine-making as well as patient diagnosis. 

Recent research by researchers found that Stanford UniversityIn just five hours, two minutes, they were able break the world record for diagnosing rare diseases in patients. Contrary to this, rare diseases are often diagnosed in four years. Children typically have to wait. Six to eight years before being diagnosed. 

A key factor in living a longer, more healthy life is reducing the time required for diagnosis.

The main problem in speeding up diagnosis is that health information is often held and accessed solely by one group or organisation (silos). Patient confidentiality makes data-sharing difficult. Researchers and organizations are looking for a new way to manage health data. They’re establishing trusted research environments (TREs) to overcome this obstacle.  

TRE is becoming a common acronym in the science and research community. A TRE is a centralized repository. TREs are a database that securely stores data and allows users to access it for analysis. Only authorized researchers have access to TREs. Data never leaves the location. The risk of patient confidentiality is minimized by the fact that data is kept local.

This is a completely different approach to the traditional ways researchers access data. For researchers to be able study the findings, they have traditionally had to download the entire dataset onto a computer. Even though individuals have been de-identified, this method increases security risks. This process is slow and takes up a lot of time, which could be better spent on the analysis of clinical data sets.

Why did the shift occur?

The COVID-19 pandemic demonstrated that standardization and availability of patient clinical data was crucial to understanding the virus and how to combat it. Researchers from all over the globe were conducting experiments, analyzing their findings and collecting clinical data sets. They then reported on their results.

This was a time when organizations realized the urgent need for a new method to manage their health data. The UK Health Security Agency began collecting whole genome sequencing in 2020 to help COVID-infected patients. Recenty, the agency passed one million genomesTheir database has yielded many discoveries and insights about the virus and its variants. These findings were then shared to benefit other countries.

Limited access has a global impact

Many research organizations are using TREs as the backbone of health data architecture. Although this is a positive step, many TREs are still unable to speak with colleagues from other organizations or departments within their own department.

Some universities even have their own research departments with their own TREs. It has been unfortunate that TREs who are not separated by a wall in an organization cannot communicate with each other. It is impossible to communicate without this ability. You can take full advantage a TRE.

The potential of TREs to improve the ability to understand the genome sector is increasing. CommunicateThis will enable scientists and researchers to work together to overcome life-threatening diseases, diagnose and treat them, and to break down the silos in their health data.

That doesnt mean moving data. Life sciences data sets are too big to move efficiently. To make matters worse, many data security regulations prevent data from being transferred outside of an organization, state, nation, or country. It is estimated that approximately 8090 percentResearch is difficult on many important datasets.

We need to shift away from data silos and allow data to be shared while in situWith the organizations that collected it. There is no other option for research as promising. 

What is considered a trusted research environment

There are many things organizations should consider before they embark on the task of creating a trusted research environment. The Five Safes framework, which is made up of the following: Safe people, safe projects and settings, safe data, and safe output are all important.,To TREs. Here is a brief overview of these components.

1. Safe people

To access health data, users must be approved and have the proper credentials. Individuals shouldn’t attempt to re-identify patients. This would violate patient confidentiality and give another party access to their credentials. Scientists and researchers must be trained in the use of the TRE platform. 

2. Safe projects 

Although TREs may have sensitive and secure information, it is important that the data used must be relevant and beneficial to public health. To achieve this, TREs should have auditing in place. 

3. Safe settings

Cloud technology should not allow data to leave the database. It should also not export any findings to users. Researchers should be able bring their own algorithms to analyze data, but tools that are imputted into the system must be kept in airlock mode. This feature allows tools to be scanned, so that the security of TRE is not compromised. Secure settingsIt also means that users are monitored on their activities to ensure that researchers and their work are appropriate. 

4. Safe data

The data within the TRE must remain secure and protected. Patients are de-identified so that researchers cannot re-identify the information. Also, data quality must be checked and cleaned to ensure that it is relevant to the project. Safe data can be a valuable asset that can lead to new opportunities. Research opportunities that will be of benefit to the general public 

5. Safe outputs

As noted in Safe settingsTREs must be able to communicate with each other. Barriers exist between the database’s researchers and those who are trying to access it. BarrierAirlocks, also known as s (or airlocks), are used to track transactions and requests from both sides so that everything is approved, secure, and safe. 

When TREs satisfy all five requirements, organizations enable a trusted research environment. 

Conclusion

Because of the size of the datasets and the sensitive nature and content of the data, genomic health data presents unique challenges for storage, management, and collaboration. TREs are the new architectural structure that bridges the gap in health data storage and management.