Sharing Health Data Securely
As the benefits of precision medicine depend on having large databases of health information, PRECISE is committed to making its data freely—and securely—accessible.
Imagine bringing your elderly mother to the hospital. Like many other people her age, she has multiple conditions, in this case, high blood pressure, a history of breast cancer and most recently, a hip fracture. Although she receives care from doctors across three different departments, they all have access to her medical history and are thus able to avoid treatments that might potentially interfere with the many medications she is already taking.
While individual patients stand to benefit by sharing multiple sources of health data—be it lifestyle, environmental or genetic—with their healthcare providers, the true value of precision medicine is at the population level. However, this societal benefit can only be felt when the relevant data is collected from millions of people from diverse backgrounds. Furthermore, that data needs to be shared widely with researchers developing new treatments, as well as clinicians administering those treatments to patients. Here’s why.
The value of big data in precision medicine
Knowing the genetic makeup of a single individual is just the beginning of the journey. Each person can have millions of genetic variants, each of which can have different effects on the body. To improve healthcare, we need to know the ‘meaning’ of each variant, and to determine what is ‘normal’ in a given population.
To identify the variants that are important for causing disease, scientists need to compare the genomes of healthy people against those with disease. This requires them to combine genetic information with health information to tease apart their effects. As some of these variants are rare, data from millions of people is needed to ensure that there are sufficient numbers of rare variants to study. In other words, the more people that contribute their data, the more accurate health predictions can be.
As a multi-ethnic population with a diverse genetic background, Singapore is the ideal place to understand the impact of genetic variants commonly found in Asia. To make an impact on health in Asia and beyond, big data—and big databases—are needed to help precision medicine become a reality.
Ensuring secure access
Once the data has been collected, it still needs to be made accessible to clinicians and researchers before its full potential can be realised. After all, data itself is merely the raw material; it needs to be transformed from information into insight. For this transformation process, different kinds of researchers hold different pieces of the puzzle. Geneticists are not the only type of scientist involved; precision medicine also taps on the expertise of statisticians, bioinformaticians, machine learning experts, healthcare economists and many more.
While doctors and scientists have research expertise, it is corporations that have the expertise to make drugs and devices into effective products that can be used safely in humans, as well as manufacture and distribute those products to hospitals. Industry partners like pharmaceuticals and medical device manufacturers bring valuable perspective as the ones who will ultimately bring the research to the patients’ bedside in the form of new drugs and therapies. It is by bringing both companies and researchers together to work on health data that new treatments can reach patients faster and more cheaply.
To ensure that legitimate users will have access to the collected data while maintaining the privacy of participants, numerous safeguards have been put in place. For example, all users who would like access to the database must first submit their requests for approval, and only studies that are assessed to be ethical and scientifically sound will be granted access permission.
Nonetheless, there is no such thing as a risk-free technology. Everything from online banking to sending an email involves a calculated risk, one that each of us takes to participate in wider society.
To minimise the risk for research participants who have agreed to share their data, all personal identifiers (e.g. names and NRIC) are removed from the research datasets. Participants will not be contacted unless they had given specific permission to be re-identified for researchers to add new health records or re-contact participants with invitations for future studies.
With these precautions in place, participants can be assured that their data will be treated with the utmost care and importantly, make a difference to the future of healthcare in Singapore.