The Big Tent

CTSI 2016 NIH Renewal Proposal Launchpad

Open data

Proposal Status: 

Academic institutions, civic agencies at all levels, and NGOs of all kinds have joined what’s being called a “data revolution” by making the information they collect and use publicly available. How can this “open data” movement advance and accelerate clinical and translational research to improve health and eliminate health inequities? The CTSI Open Data Initiative will bring together under one umbrella projects currently underway at UCSF and other UC campuses along with their government and community partners to explore fruitful routes and best practices for maximizing the applicability and interoperability of publicly available (and potentially available) datasets, including clinical and population health data; economic and demographic data; transportation and planning data; and research datasets that could influence and improve the health care and health status of individuals and populations. 

Activities at UCSF that fall under the rubric of this initiative include SFHIP (including HUMS), CELDAC, and DataShare. Partners in San Francisco include the Hospital Council of Northern and Central California, SF Department of Public Health, DataSF/Mayor’s Office of Civic Innovation, SF Police Department, SF MTA, SF Rec and Park Department, District Attorney’s Office, and other city offices and agencies. Community partners include the San Francisco health disparities and health parity coalitions, healthy retail coalitions, alcohol prevention coalition, and nonprofits such as the YMCA. Resources would support the application and use of open data to meet the aims and activities of those health improvement and disparities-focused partnerships. Resources would also support the development of evidence-based health and healthcare apps and other technology tools (registries, health information exchanges, new and improved mobile devices). Activities would include Translational Science Hackathons and intensive workshops to identify mutually-held incentives, establish cost-savings goals, and activate assets and resources to maximize the impact of collaborative efforts.



Summarize the problem being addressed.  Please make sure this is NOT disease-specific

There is a need for clear, coordinated efforts to organize and use abundant and varied publicly available health-related data to advance and accelerate clinical and translational research to improve health outcomes and eliminate health inequities.


Summarize the solution being proposed.  Please make sure this is NOT disease-specific, although you can provide examples of specific test cases

An initiative to explore fruitful routes and best practices for maximizing the applicability and interoperability of publicly available (and potentially available) datasets to improve the health of individuals and populations. SFHIP (including HUMS), CELDAC, the CRN, and DataShare are existing efforts that could serve as frameworks. Activities could include hackathons, workshops, policy forums, etc.


What partners are involved in the solution?

Such an effort requires intensive partnership to make the use of open data relevant and acceptable, and the application of data feasible. Partners range from biobanks to the World Health Organization and include local, regional, state and federal departments and agencies; NGOs and nonprofit organizations; academic institutions; and commercial entities.


What is the potential impact?

  • Coordinated, streamlined process for collection and effective use of publicly available data.
  • New policies and regulations for data collection and use.
  • Improved health outcomes and reduced health inequities.
  • New and enhanced partnerships.

CTSI has the potential to substantially improve the ability of the UCSF research community to answer important research questions by accessing a variety of open and unconventional data sources.
We envision CTSI organizing an an ongoing open proposal process to solicit research questions that might benefit from access to these data sources. Winning research questions will be featured at public data meetups, either online or offline (hackathon style).
In addition to UCSF's existing communities of researchers and data experts, we will also leverage our wide networks to invite a variety of data "matchmakers," such as civic groups like Code For America, search and social media companies like Google and Twitter, public interest technologists like the EFF and hacker spaces, unconventional civic data sources like Uber and Lyft, major retailers like Target and Wal-Mart, drugstores like CVS, and health data experts internal to UCSF. (If we're incredibly lucky, perhaps the NSA will join up as well.)
These data matchmakers will brainstorm, make connections, and help introduce researchers to a variety of possible sources. CTSI will help facilitate infrastructure, expertise, and relationship management to create an ever expanding capacity for research using open and unconventional data.

v. cool... ties into ideas we're building with Reg4All/Genetic Alliance

(Group: Fabrice Baretta, Paula Fleisher, Lattice Armstead, Talmadge King, Jaime Sepulveda, Erin Bank, Sharon Terry, Julie Harris-Wai, Nooshin Latour)

  1. How do we maximize impact and broad applicability of the proposal?

    New title for proposal -> Discovering the value of Open Data & Building the Infrastructure to Understand / Use it

-1st need structure or mechanism to make sense of it, educate about it, advocate about it to improve health -> acknowledging that people are needed to create the data
- To maximize impact we need to link one patient’s data to all the various databases mentioned (linkages and interoperability of data sets), which also requires educating patient.

-Only common element is the patient. So if the individual has control (most likely will share if you ask them) – find a way to unify that. Consider it as a snapshot.

-Start with the Bay Area – do it well and make scalable to CTSAs, national network (ex., Choose pilot )

-Build platform for capturing the data: Start unifying how data is collected and organized (ex., asthma patient form filled out by doctor), make consistent

-Skeptical patients cannot just use and interpret their data -> provide a better way for analysis/immediate dissemination of data (ex., dashboard)
-Ideal is Health Information exchange – build a cloud based registry and payers could plug in

**Measurable outcome: With dataset -> Enabling groups that couldn’t have done this research before

-Aggregated population level data

 2.     What foundation exists on campus already that will ensure success of the initiative?

-Campus data service programs (gurus) / BioMedical Informatics core / Community Engagement & Health Policy

-Facilitate a conversation with one disease area (ex., Hepatitis B with SF Health Improvement Partnership)

-UCSF Decision Services

 3.     What creative and/or innovative partnerships could be leveraged to ensure success?

-Disease advocacy organizations need publicly available datasets. (Ex., Hep B/C, Obesity advocates to pilot w/)
-Kaiser Permanente, Division of Research, Bioinformatics core
-Community Stakeholders
-Health Disparities experts

this could also be a scalable solution for secure data warehousing to comply with NIH requirements for post-award data sharing of grants of more than $500,000 annual funding.

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