Better Systems for Clinical Data Collaboration

Innovation in Systems and Software

In my last two posts, I wrote about the need for more liquidity in clinical research data.  As a foundation for sharing this new more-liquid clinical research data, we need more patient-centric systems, where patients can create, consume and maintain relevant medical information.

However, in the average hospital, most patient data is generated and organized in the clinic, and typically stored in a variety of different legacy hospital systems.  Pretty illiquid by definition. Therefore, we need fresh approaches to sharing that data across hospital systems  ― and then across multiple hospitals.  

Fortunately, innovation in systems and software is beginning to happen on this front.

Several organizations ― including Dana-Farber Cancer Institute, the LIVESTRONG Foundation, and Boston Children’s Hospital ― are working to build a reference implementation.  This is a technology model that would describe how a hospital could publish the information contained in its systems easily, securely and efficiently to other institutions. 

Another very interesting technology is the SMART Platform, developed under the leadership of Dr. Zak Kohane and Dr. Ken Mandl at Children’s Hospital in Boston.  The SMART Platform and i2b2 Analytical tool are truly a step in the right direction.   

These new technical approaches provide the ability to build cool new apps very quickly – apps that combine data reported by the patient in an interface like the LIVESTRONG Cancer Guide and Tracker iPad app alongside data collected by traditional clinical systems. Using the same approach, we can build apps for physicians and many other use cases and simultaneously make the apps accessible via browser-based applications.

Let’s think about what else we can do as an industry – and encourage many people and companies to start writing new apps quickly.  

In my next post, I’ll talk about big remaining challenge to the liquidity of clinical research data – patient consent – and how we win patient trust and cooperation.

This blog post came out of a presentation that I recently delivered at Rev Forum, a conference sponsored by Lance Armstrong’s LIVESTRONG Foundation and Genentech. I have worked with LIVESTRONG and various biopharmaceutical companies on new health care information products and apps that take advantage of data liquidity to help patients combat cancer and other difficult diseases.