The Future of Health Data Management – Enabling Trusted Research Environment

Researchers and scientists have more access to health research data, which allows them and others to discover new treatments and diseases. These data, which are based on genomic markers and other biomarkers, are the key to medicine-making and patient diagnosis. 

Researchers at Stanford UniversityThey were able to break a world record for diagnosing a patient suffering from a rare disease in just five hours and two minutes. A typical diagnosis of rare diseases can take up to four years, and children often have to wait. Six to eighteen 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), and 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 approved researchers can access TREs. No data ever leaves the location. The risk of patient confidentiality is minimized by the fact that data stays put.

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. This method increases security risks, even though individuals have been identified. This method is time-consuming and could be better used to analyze clinical data sets.

Why the shift?

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 parts of the world conducted experiments, analyzed their findings, collected clinical data sets, then reported on their outcomes.

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. The agency recently passed one million genomesThis database has allowed for many discoveries and discoveries about the virus as well as its variants. These discoveries were shared with other countries for the benefit of the entire world.

Limited access has a global impact

Many research organizations are relying on TREs to provide the architecture for their health data. This is a good step in the right direction but many TREs can’t speak to colleagues or other departments within their organization.

Some universities have their own research units, each with its own TRE. 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. Take full advantage of 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. Accordingly, estimates suggest that as high as 8090 percentMany important datasets are simply not available for research.

It is time to move away from data centralization in silos and towards data sharing while in situWith the organizations that collected it. There is no other option for research as promising. 

What is considered a trusted research environment

When organizations embark on the task of creating a trusted research environment, there are many things they need to take into consideration. The Five Safes framework has been applied by the UK Health Data Research Alliance. Safe people, safe projects. Safe settings. Safe data. And safe output.,To TREs. This is an overview of the 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. Projects that are safe 

Even though TREs have access to sensitive information and are secure, it is vital that data used for public health purposes is relevant and useful. Auditing must be done by TREs to ensure compliance. 

3. Secure settings

Cloud technology should never export data or allow data to leave the system. 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. Safe settingsThe users are also tracked on their activity in order to make sure that researchers and their work is 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. Secure data can provide new opportunities. Research opportunities that will be of benefit to the general public 

5. Safe outputs

As noted in Secure 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. 

Organizations can create a trustful research environment when TREs meet all five requirements. 

Conclusion

Due to the sheer size of the data and the sensitive nature of the information, genomic health data presents unique challenges in terms of storage, management and collaboration. TREs are being used as the architecture to bridge the gap between health data and security so that the information can scale and be secured.