Smart Health Record allows patients to directly share their data

By Melissa Fassbender

- Last updated on GMT

(Image: Getty/oatawa)
(Image: Getty/oatawa)

Related tags EHR Data collection monARC Bionetworks Wearables

monARC Bionetworks’ Smart Health Record allows patients to directly share with researchers their data from various disparate sources – “creating a new data collaboration economy.”

The San Francisco, CA-based company recently launched its Smart Health Record (SHR) as “a core component”​ of its real-world data (RWD) technology platform.

The SHR tool collates medical records from any health system that offers patients an online portal to view their records. These portals connect to monARC’s system, which configures, aggregates, and displays the data on the SHR.

“The SHR also connects with our mobile phone app which can be linked to wearables and other external devices to integrate that data as well,”​ explained  David Winternheimer, VP of business development at monARC Bionetworks.

With all this information in a single location, users can share their data with family members, physicians, and researchers. Data is shared anonymously and the platform complies with all privacy regulations.

Winternheimer said, “By allowing patients to directly share their data, monARC is creating a new data collaboration economy to transform highly sequential and siloed therapy development models into integrated and collaborative endeavors with patients at the center.”

“As patients choose to donate data, from a research perspective this real-world data is very valuable as it represents the reality of the setting in which they must recruit their trial participants and the context in which physicians will treat and prescribe patients once their drug is approved. The access to RWD gives scientists information to design better trials.”

However, disparate data sources and a lack of interoperability between them is an industry-wide challenge.

Converting these various sources of data into a universal format, Winternheimer said monARC’s platform is able to reorganize information “in a scientific manner, transforming it from real-world data into real-world evidence.”

The company has been focusing on Idiopathic pulmonary fibrosis patients but is currently expanding to additional areas. Feedback from the company’s first pilot projects were “very positive,”​ according to Winternheimer.

Additionally, monARC has an app that enables patients to record their symptoms and connect to wearable devices. “As we increase our integration with these daily use devices, we'll also make that information available in the online portal," ​Winternheimer explained, "thereby giving patients, families and doctors easy access to these real-world data sources to better manage their care."

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