Post-MozFest Report: Mapping Open Projects in Health
From the BBC Labs' Ethical Cafe that prompted important questions about consent for data collection to a session on how to walk the talk, we had a blast learning, doing & (map) making!
[BBC Labs: Perceptive Radio & hidden photo camera ... capturing all data that can be accessed from you and your devices]
The Mozilla #EmbraceOpen team asked Mozillians: What does "open" mean to you? This was a recurring question for us, so we sketched a "Periodic Table of Open Elements" to show how open philosophy might be applied. We plan to evolve this table... so please feel free to build on this idea in the comments.
[That's Ac: Access, Ha: Hardware, Me: Methods, Co: Content, Fc: Free Culture, So: Software, Ph: Philosophy, Kn: Knowledge, Cs: Citizen Science, Da: Data]
On the Science floor, we joined a hallway of map makers including Lucas Blair of Little Bird Games mapping career pathways in STEM. I'm the interdisciplinary career that bridges science & technology.
and Billy Meinke from Creative Commons who mapped skills for open:
We made #openhealthmap - a map of open source projects in health. Thanks to Mozillians & the Twittersphere, we identified over 50 projects that demonstrate the myriad ways that open source philosophy can be applied in health care.
You can see the digital summary of results or the actual table. If you know other projects, please tell us and help build this open map!
To participate in an ongoing conversation about open source initiatives in health, join us in the open health forum. (Hosted by Open Knowledge Foundation)
To identify opportunities to apply open source in health, Mozillians also created a Library of Problems and a Gallery of Ideas.
Library of Problems: [partial, full list on our MozFest Etherpad at 142]
Health staff don't have skills to use tech or access to new tech
Negative clinical trial data is often not available
Different doctors have access to only partial medical records
Literacy levels - people may not understand forms/consent
Donated medical equipment breaks & can't be repaired
Access to information is restricted and proprietary (e.g. lab reference values)
Researchers of cures/treatments work in isolation
Need for a stakeholder view of data (who collects it, what data do they collect, why are they collecting it/what's their interest) in order to understand what the barriers are to open and how open source can bring value
How to make what is shared accessible/used by other researchers across disciplines/geography
How do you implement new technology (e.g. 3D printed body parts) and overcome the high technical and regulatory barriers to new technology creation and adoption
The Gallery of Ideas offer interesting solutions that leverage the power of open source: [partial, full list on our MozFest Etherpad at 112]
Open data available on clinical trials (see e.g. YODA with selected clinical trial data from Johnson & Johnson)
Open lab values aggregated to enable access to benchmark lab results
Open mHealth / quantified self data available to contribute for public commons (see e.g. OpenmHealth and mHealth working group)
Crowd sourcing data collection to advance medical knowledge to reduce the cost of R&D (see e.g. Open Drug Development/Open Source Malaria)
Open funding for translational research (see e.g. science crowd funding platforms: )
Address specific patient health issues by enabling data sharing from the lay public in an open source way (e.g. person with x condition can share their x-rays over time to benefit others with x condition)
Building operations/systemic level of care on the idea of leveraging personal networks, operating with transparency and strengthening relationships
Open Costs (how do other countries manage care costs and disease treatments)
Open Source Tool for securely sharing health data with GP/Researchers on my terms (e.g. facebook privacy setting)
Global health data commons to which people can opt to contribute their personal quantified self and other health data
Check out the full report on our MozFest Etherpad.
We will continue to build this map of open source in health. Our next step is to make the map easily searchable, to enable open contributions and to contextualize this map of projects for identifying opportunities for collaboration and disruption of health care with open source solutions!
Huge thanks to our collaborator and co-facilitator Jenny Molloy from the Open Science Working Group of OKFN
[Jenny with SenseDrinks attendees at prototype mapping session]
And big shout out to everyone who contributed to our #openhealthmap from MozFest, the Twittersphere and the prototype at MakeSense SenseDrinks.
After 2+ inspiring days on the Science Floor- we left happy & energized- thanks all for an awesome MozFest - #EmbraceOpen & see you next year!