Thoughts on The Importance of Data Governance In The Future of Healthcare written by Adi Gaskell, HuffPost News Sept. 30, 2017.
Gaskell wrote an excellent article highlighting the challenges of data governance and the collection and use of an individual’s genetic content. Beyond governance, his article also raises questions in regards to data management and data stewardship.
While the legal and ethical aspects of your body’s data and your ‘biorights’ may take years to get sorted out, there is absolutely work that can be done now with your data to ensure a higher level of preparedness as this unfolds. In fact, it is unfolding right now in the United States. Precision Medicine and The Precision Medicine Initiative are going to change our health care system profoundly. And we’re just entering this brave new world.
Efforts to ensure that your data can enable this and other trends in healthcare should have already started. There are implications to security, privacy, and dissemination of the data. How the data is used, and if it should be used, are important data usage and ethical questions which need to be answered. Not mentioned in the article but equally important are the metadata, quality and retention of the data over time.
And to make matters worse, anyone with a smartphone expects to be able to access their personal information anytime and anywhere. In order to make any of this possible, fundamental changes need to be made to the processes, resources and the technology that manage the data. More importantly, this data needs to be integrated seamlessly with the other medical information that is already being utilized so that a ‘single view of the patient’ can be realized and the promise of Precision Medicine can be fulfilled.