Dear PJ, Nigam, Keith (and Jonathan),
Thank you for your fascinating Stanford “Health Policy Forum | How far should scientists go with data sharing? A debate about open science” panel - https://events.stanford.edu/
events/702/70229/. It inspired a number of ideas and questions that I’ve outlined below - as a further expression of open science. (I know Jonathan here – who is, I think, the newest Stanford Professor of Medicine, from Stanford Medicine Grand Rounds, - and next to whom I was sitting during your great panel).
Concerning open data and clinical trials, why not just build upon existing scientific approaches in universities, academic journals, STEM peer review and ethics’ boards, country by country in each of their languages, “investing” in specific kinds of cultures of open data as this unfolds in the information age (both on the ground and online)?
This would include defining “process” and the “how” in unfolding ways, and taking into account existing countries’ universities’ cultures of science (extending out from nation states’ universities’ approaches as organizations)?
This could also build upon open science data approaches in the US and Canada – university after university - and build upon scientific association after scientific associations' approaches to open data, and build too upon, for example, university and government approaches to this (i.e. clinicaltrials.gov and the NIH as some of numerous examples).
Such an approach would also define open data policies based on say the past 50 years' STEM conversation - with concern for investing/capital, big pharma, alcohol, tobacco questions, etc, and country by country, - and aim for highest quality, say with Stanford and MIT as models.
As the founder of startup wiki CC World University and School - http://
worlduniversityandschool.org - I’m asking myself further how CC MIT OpenCourseWare-centric (and CC Yale OYC-) online WUaS first in CC MIT OCW’s 7 languages, and in Wikipedia's 295 languages, building to ~200 countries’ official languages as major universities) could best build “process” or "how" for these open data questions, especially as machine learning and machine translation develop. And for online research especially, World University and School would begin with CC MIT OpenCourseWare’s 7 languages - https://ocw.mit.edu/courses/ translated-courses/ .
I also wonder how a realistic virtual earth (conceptually, think Google Streetview / Maps / Earth with time slider, and Google Brain, and at the cellular / atomic / and subatomic levels, and also build-able/code-able by STEM researchers) for STEM research, and even for experimentation, and especially clinical trials - http://worlduniversity.wikia.
com/wiki/Clinical_Trials_at_ WUaS_(for_all_languages) - would help with, what I'll call, this developing "investment in open data process."
As just one pragmatic example for open data and clinical trials, why not build out from Stanford for defining the "how" further (and re allocating resources' questions too) with Google’s I.T. infrastructure, re information technology with TensorFlow in multiple countries’ languages, and also especially with Google’s approaches to, and history with, privacy, open data, legal questions, and both organizations approaches to I.R.B.s and related scientific peer-review processes?
Scientists, STEM researchers, and the legal profession (among many), of course, and in multiple languages / countries, will critique such an open data legal scientific process in ongoing ways, which will help improve these approaches over time.
How to further define open data and clinical trials re A) culture/academic norms, B) Law and C) the economics of big science, too? World University and School’s planned law schools in all ~200 countries’ official languages would help with this, hiring the faculty to teach online about these questions, under one ~200 countries' languages' university umbrella.
World University and School is also planning MIT OCW-centric online medical schools and online teaching hospitals in each of all ~200 countries’ official languages. And World University and School seeks also to plan for all 7.5 billion people on our wiki schools’ wing in each of all 7,099 living languages (for a variety of reasons, including the blockchain ledger for health care and UBI – eg see: http://scott-macleod.blogspot.
This will include developing approaches to open data and clinical trials, such as will emerge from genomics and in innumerable scientific/STEM fields, and re the health care blockchain ledger, for example. How to plan for all the contingencies mentioned by you in your panel, in planning for quality and degrees of data openness (- and again in all ~200 countries’ official languages, as part of online major universities, conceptually)?
Creative Commons’ licensing for patients’ data may be part of the answer, but teaching about “who owns individuals', and accounting for any specific individual's, health data?” (as well as about trust, verification, and certification efforts) in the planned WUaS online law schools would facilitate approaches to answering questions you raised in your panel, while also potentially facilitating the trust and value of scientific openness for ongoing STEM innovation, experimentation, and discovery.
So, why not simply define, refine and develop further already existing scientific processes re trust, open data and clinical trials going forward – further defining questions of ownership too, and approaches to investing in open data?
Thank you so much for your fascinating Stanford panel and I hope we can communicate further about this with time in multiple ways. And very nice to meet and talk with you afterward. Thank you.
PJ Devereaux - McMaster University's Faculty of Health Sciences
Nigam H. Shah, MBBS, PhD's Profile | Stanford Profiles
Keith Humphreys' Profile | Stanford Profiles
Jonathan H. Chen, MD/PhD, Medical Informatics - Stanford University
- Scott MacLeod - Founder & President
- World University and School
- CC World University and School - like CC Wikipedia with best STEM-centric CC OpenCourseWare - incorporated as a nonprofit university and school in California, and is a U.S. 501 (c) (3) tax-exempt educational organization.
IMPORTANT NOTICE: This transmission and any attachments are intended only for the use of the individual or entity to which they are addressed and may contain information that is privileged, confidential, or exempt from disclosure under applicable federal or state laws. If the reader of this transmission is not the intended recipient, you are hereby notified that any use, dissemination, distribution, or copying of this communication is strictly prohibited. If you have received this transmission in error, please notify me immediately by email or telephone.
In addition to the blog link above, see, too:
Sustainability: Universal Basic Income for all 7.5 billion people as Assistive Technologies - and coding for this re World University and School, "Subduction (Gros Morne, Canada): Blockchain(&Bitcoin) for Health Care for All?, Jonathen Chen, Stanford Professor of Medicine (Programmer too) ...", "Plate tectonics: Blockchain ledger and planning for technical programming - re Stanford, Blockchain ledger data standards for health care sound worth developing, Robotic surgery, Conceptually - like Quickbooks/Multi-Store/TurboTax particularly for their multiple countries' multiple languages ..."
Very glad Stanford Professor Diana Do MD has recently joined the new WUaS Corporation Board:
Diana V. Do, MD's Profile | Stanford Profiles