The COVID-19 pandemic has led to more institutions sharing healthcare data. There are still barriers to be overcome to ensure data sharing is more commonplace however.
Data sharing across sectors has been feasible for a period of time now. It’s not prohibited by technical issues but instead by other obstacles such as ethical, social, and legal issues.
Healthcare data sharing needs an infrastructure to support it.
That infrastructure should provide functionality, transparency, and data security. All the stakeholders must commit to making it work.
One of the greatest obstacles to sharing data can be a lack of trust. Other barriers include the cost of the data and how it ends up used.
During the pandemic some providers have started sharing their data on COVID-19. The HCA healthcare system in Nashville, Tennessee has collected data on its COVID patients since March 1, 2020.
They were approached by the Agency for Healthcare Research and Quality and asked if they wanted to collaborate on a long term basis. The aim was to provide information that could be be used to provide a greater understanding of the nature of COVID-19.
HCA were able to offer access to their data to help build on AHRQ´s existing knowledge. Due to the urgency of the pandemic, trust is being built quicker among HCA and other such external research organizations. The potential of adding other health systems to contribute their data is also being actively looked into.
Another large health data sharing project is the N3C. Sponsored by the National Center for Advancing Translational Sciences, the goal of this group is to gather data on people that have COVID. Looking at their medical information dating back from 2018 should help them get a better understanding of the virus.
Currently 197 organizations are using the data.
It includes 1.2 million COVID patients’ electronic health records, in addition to control patients who haven’t had COVID. The data provides a wide range of data covering all sectors of the population, in cities and more rural areas as well as ethnicity, and race. Around 2,000 people have contributed to the database. The pandemic has been terrible but it’s also shown how people and organisations can work together for a common good.
The database raises issues with regards to who can use that data however. The database includes healthcare data from a wide range of sources. If an organisation is looking at the data for a specific purpose can they look at other parts of the data which isn’t necessarily relevant to their needs?
Patient privacy is another issue which almost always raises its head when it comes to discussions like these.
Many organisations have already put out guidelines and codes of conduct for using data and the implications and procedures are being looked at.
Whilst there are still problems to iron out, the US has come a long way with health data in a relatively short time. 5 or 6 years ago less than 50% of the country had functional electronic health records. These days that number significantly higher. There is still a long way to go with the main challenge being the fragmentation of the industry.