“Can researchers count on patients to continue doing so?” This was asked in one of the articles published in the latest issue of The Lancet: Digital Health. The piece referenced an initiative announced by the Health Data Research UK (HDRUK) a month ago: seven new data hubs will be launched to support the discoveries of new medications, treatments, and technologies for quicker diagnoses and saving lives.
The concerns in data sharing
In the press release, HDRUK mentioned the use of patients’ health data and those who are involved will be consulted on how their information are being used and accessed. At the same time, these hubs shall partner the NHS (National Health Service) to ensure all data are kept safely and securely. Nevertheless, some local media still questioned whether patients’ privacy could be undermined in the process.
The skepticism worries some researchers, especially in this era when patients’ data is an unavoidable ingredient to develop new data-driven technologies and sustain a healthier nation in the long run. They are afraid the act of doubt or drawing attention to unforeseen risks may deter patients from giving their consent to use their health information for future research plans.
At the moment, less than 3% of patients will choose not have their health data shared beyond the NHS for purposes other than their own care. Reasons for doing so varied but most of which revolved around trust. Some patients thought their data could be used for commercial purposes; they do not believe in the benefit of data sharing; they are afraid they may be classified or regarded in some ways, or the mere fact that they do not have confidence in data security.
How to keep patients on board?
It’s reasonable for patients, particularly those with sensitive health issues, to withhold their consent. As such, openness, transparency and respect become crucial to maximize the chances of getting
Besides, rather than hosting a continuous debate on whether data sharing is beneficial or putting fellow patients at risk, it will be more helpful to focus on the practicality of new technologies. Assisting patients to understand more about data-driven technologies, their present successes and future impacts on a wider community may facilitate their decisions on data sharing.
Apart from a top-down approach in the collection of patients’ data, researchers also encouraged data sharing schemes run by individual patients. For example, Sync for Science, a public-private collaboration in the US, which assists in the sharing of patients’ electronic health records (EHRs) with researchers. The approach is remarkably useful in countries where there is an absence of a centralized public health service to keep track of patients’ records.
Similarly, the European Patients Forum governs by the European Union is also exploring the opportunities stamped from data sharing. After all, if data sharing is indeed exercising its intended benefits, then it will not only concern a health data community within a country but across Europe as well.
A science writer with data background and an interest in the current affair, culture,