Epic is planning on developing a clinical data warehouse incorporating records from 20 million patients. The project is called Cosmos and, needless to say, will be a remarkable resource for research (see: Epic to gather records of 20 million patients for medical research). Below is an excerpt from an article discussing it:
Epic is unveiling a massive data compilation effort intended to gather de-identified patient information from participating systems that eventually could be used by clinicians to improve care decisions. Called Cosmos, the initiative aims to aggregate patients’ medical information from its customers to offer a wider base of information from which to enable real-world evidence based practice of medicine, even for conditions that are now currently rare and on which it’s difficult to have a large enough sample size on which to make medical decisions....So far, nine healthcare systems are contributing patient data to Cosmos....The company is in discussions with more than 30 other customers that could contribute data, which would result in the data of about 25 million patients being included. Health systems that want to participate sign a contract and then must work to ensure that the medical information they contribute to Cosmos is of high quality and standardized to ensure that it can be used to support research.....The data won’t be used for research until it has the records of 20 million patients....The company plans to empower uses to sift through the information with existing analytics tools, such as Slicer-Dicer, but plans to develop more applications that will enable users to manage research.
John Moore, the noted healthcare blogger (see: The Healthcare Blog), has the ability to cut through the hype of announcements such as this one (see: Epic Looks to the Cosmos) and extract the key points. Below is an excerpt from John's note on Cosmos:
Cosmos is a hosted data warehouse built on Caboodle stack and will include a hosted version of Epic’s analytics toolset, Slicer-Dicer, that researchers can use to explore the data (see: Using Epic Cogito Data Warehouse For Population Health Management). That would be incredibly cool as today there are about 200 million patients with health data in an Epic EHR. But there may be a tear in the Cosmos. While this is a new release, today Epic has only convinced a small handful of customers to participate. Healthcare providers, particularly large academic medical centers, may be wary of submitting their data for others to use, even for research. Just how open that virtual system Judy speaks of is to other, competing healthcare solutions is unclear.
Cosmos is planned to ultimately contain data from 20 million patients who, I personally believe, own their own data (see: Who Owns EHR Data? What constitutes proper data stewardship?; What Is Meant by Healthcare Consumers "Owning" Their Medical Records; Third Parties Harvest Patient Health Data; Is Anonymized Data Secure?. In the name of patient stewardship, I would suggest that the best interests of these patients, and what they probably would desire if asked, is that their data be made available for medical research in the broadest way possible (i.e., Cosmos should be "open access"). That means access should be provided to any qualified medical researcher or institution at minimal or no cost and not just to Epic clients. Judith Faulkner has a history of favoring Epic clients unless and until pushed to do otherwise. In this case, the CEOs of large academic centers are holding all the trump cards. I hope that they will do the right thing instead of pursuing special privileges for their own health system, which is to say demand open access to the Cosmos medical data.
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