A recent article by Lindsey Cook on the US News and World Report blog discusses the value of big data, the repositories of health information that are becoming more commonplace in healthcare institutions and organizations.

Many hospitals are now managing incredibly large amounts of data on patients, and that trend will continue to climb in the future as targeted or personalized medicine becomes the norm rather than the exception.

The Role of Big Data

The role of big data is becoming increasingly important, especially when it comes to cancer research. As the article states, “Between 5 and 7 percent of Americans have one of the 7,000 diseases health professionals consider rare. A single hospital wouldn’t have the number of patients needed to learn about the disease alone, so this area has been one of the leaders in data resources.”

LRG’s Registry

Patient Registry SampleThe LRG’s Patient Registry and GIST Collaborative Tissue Bank have already contributed to the cause of saving lives through research. With the clinical data tied to a tissue sample, and made accessible to researchers all over the world, this may play a key role in the search for a cure for GIST. Data in the LRG’s Registry is provided by the patients themselves, which allows a unique advantage – regardless of whether a patient moves to another hospital, or even to another country, they can continue to provide data that is stored in one place. With institutional registries, that is not usually the case – once a patient moves on, data collection at that institution often stops.

Although healthcare has been slow to adapt to patient-driven registries, the LRG has seen the value of utilizing data and data analysis both for helping our members access optimal treatments, but also for our research team as they look to develop future treatments.

We also have the ability to move forward our research, as it is privately funded. The average time from when a National Institute of Health Study is proposed and findings are published is seven years.

Some of the issues in expediting more data repositories include consent and patient privacy. The LRG’s Patient Registry maintains the privacy of our members. Any data or information that is shared in any way is always cleansed of any identifying information in order to protect confidentiality.

Click here for more information on the LRG Patient Registry:

Mary Garland
Author: Mary Garland