Citizens as partners in the use of clinical data

A Knowledge Currency Exchange for health and wellness

This article was written together with Mike Kellen, Director of Technology at Sage Bionetworks, and Christine Suver, Senior Scientist at Sage Bionetworks.

The current push towards patient engagement, when clinical researchers trace the outcomes of using pharmaceuticals or other treatments, is a crucial first step towards rewiring the medical-industrial complex with the citizen at the center. For far too long, clinicians, investigators, the government, and private funders have been the key decision makers. The citizen has been at best a research “subject,”and far too often simply a resource from which data and samples can be extracted. The average participant in clinical study never receives the outcomes of the study, never has contact with those analyzing the data, never knows where her samples flow over time (witness the famous story of Henrietta Lacks), and until the past year didn’t even have access to the published research without paying a hefty rental fee.

This is changing. The recent grants by the Patient-Centered Outcomes Research Institute (PCORI) are the most visible evidence of change, but throughout the medical system one finds green shoots of direct patient engagement. Read more…


Data sharing drives diagnoses and cures, if we can get there (part 2)

How the field of genetics is using data within research and to evaluate researchers

Editor’s note: Earlier this week, Part 1 of this article described Sage Bionetworks, a recent Congress they held, and their way of promoting data sharing through a challenge.

Data sharing is not an unfamiliar practice in genetics. Plenty of cell lines and other data stores are publicly available from such places as the TCGA data set from the National Cancer Institute, Gene Expression Omnibus (GEO), and Array Expression (all of which can be accessed through Synapse). So to some extent the current revolution in sharing lies not in the data itself but in critical related areas.

First, many of the data sets are weakened by metadata problems. A Sage programmer told me that the famous TCGA set is enormous but poorly curated. For instance, different data sets in TCGA may refer to the same drug by different names, generic versus brand name. Provenance–a clear description of how the data was collected and prepared for use–is also weak in TCGA.

In contrast, GEO records tend to contain good provenance information (see an example), but only as free-form text, which presents the same barriers to searching and aggregation as free-form text in medical records. Synapse is developing a structured format for presenting provenance based on the W3C’s PROV standard. One researcher told me this was the most promising contribution of Synapse toward the shared used of genetic information.

Read more…


Data sharing drives diagnoses and cures, if we can get there (part 1)

Observations from Sage Congress and collaboration through its challenge

The glowing reports we read of biotech advances almost cause one’s brain to ache. They leave us thinking that medical researchers must command the latest in all technological tools. But the engines of genetic and pharmaceutical innovation are stuttering for lack of one key fuel: data. Here they are left with the equivalent of trying to build skyscrapers with lathes and screwdrivers.

Sage Congress, held this past week in San Francisco, investigated the multiple facets of data in these field: gene sequences, models for finding pathways, patient behavior and symptoms (known as phenotypic data), and code to process all these inputs. A survey of efforts by the organizers, Sage Bionetworks, and other innovations in genetic data handling can show how genetics resembles and differs from other disciplines.

An intense lesson in code sharing

At last year’s Congress, Sage announced a challenge, together with the DREAM project, intended to galvanize researchers in genetics while showing off the growing capabilities of Sage’s Synapse platform. Synapse ties together a number of data sets in genetics and provides tools for researchers to upload new data, while searching other researchers’ data sets. Its challenge highlighted the industry’s need for better data sharing, and some ways to get there.

Read more…


Recombinant Research: Breaking open rewards and incentives

Can open data dominate biological science as open source has in software?

To move from a hothouse environment of experimentation to the mainstream of one of the world's most lucrative and tradition-bound industries, Sage Bionetworks must aim for its nucleus: rewards and incentives. Comparisons to open source software and a summary of tasks for Sage Congress.


Recombinant Research: Sage Congress plans for patient engagement

The Vioxx problem is just one instance of the wider malaise afflicting the drug industry. Managers from major pharma companies expressed confidence that they could expand public or "pre-competitive" research in the direction Sage Congress proposed. The sector left to engage is the one that's central to all this work–the public.


Recombinant Research: Sage Congress promotes data sharing in genetics

Report from a movement that believes in open source and open data in science

Through two days of demos, keynotes, panels, and breakout sessions, Sage Congress brought its vision to a high-level cohort of 230 attendees from universities, pharmaceutical companies, government health agencies, and others who can make change in the field.