The University of Miami's Clinical & Translational Science Institute runs a seminar course for MS students.
This talk surveys 8 citizen science projects, reviews NIH's current activities, and identifies issues for attention, particularly with ethical, legal and social implications.
Thesis Proposal, as presented for dissertation proposal defenseHeather Piwowar
The slides I presented for my PhD proposal defense for my project, "Foundational studies for measuring the impact, prevalence, and patterns of publicly sharing biomedical research data." Dept of Biomedical Informatics, University of Pittsburgh.
Inference of natural selection in human populations and cancersTÀI LIỆU NGÀNH MAY
Để xem full tài liệu Xin vui long liên hệ page để được hỗ trợ
: https://www.facebook.com/thuvienluanvan01
HOẶC
https://www.facebook.com/garmentspace/
https://www.facebook.com/thuvienluanvan01
https://www.facebook.com/thuvienluanvan01
tai lieu tong hop, thu vien luan van, luan van tong hop, do an chuyen nganh
Cemal H. Guvercin MedicReS 5th World Congress MedicReS
Ethical Issues in Artifical Intelligence Applied to Medicine Presentation to MedicReS 5th World Congress on October 19,25,2015 in New York by Cemal H. Guvercin, MD, PhD
Bullying—long tolerated as just a part of growing up—finally has been recognized as a substantial and preventable health problem. Bullying is associated with anxiety, depression, poor school performance, and future
delinquent behavior among its targets, and reports regularly surface of youth who have committed suicide at least in part because of intolerable bullying. Bullying can also have harmful effects on children who bully, on
bystanders, on school climates, and on society at large. Bullying can occur at all ages, from before elementary school to after high school. It can take the form of physical violence, verbal attacks, social isolation, spreading
rumors, or cyber bullying.
Increased concern about bullying has led 49 states and the District of Columbia to enact anti-bullying legislation since 1999. In addition, researchon the causes, consequences, and prevention of bullying has expanded greatly in recent decades. However, major gaps still exist in the understanding of bullying and of interventions that can prevent or mitigate the effectsof bullying.
This publication examines reviewed research on bullying
prevention and intervention efforts as well as efforts in related areas of research and practice, implemented in a range of contexts and settings, including
• Schools
• Peers
• Families
• Communities
• Laws and Public Policies
• Technology
1 Introduction and Overview 1
PART I
UNDERSTANDING BULLYING
2 Overview of Bullying and Victimization 9
3 Targets of Bullying and Bullying Behavior 19
PART II
CONTEXTS FOR PREVENTION AND INTERVENTION
4 School-Based Interventions 35
5 Family-Focused Interventions 49
6 Technology-Based Interventions 57
7 Community-Based Interventions 65
8 Peer-Led and Peer-Focused Programs 73
9 Laws and Public Policies 81
PART III
FUTURE DIRECTIONS AND OVERALL THEMES
10 Translating Bullying Research into Policy and Practice 91
11 Reflections of School Personnel and Student Perspectives 103
12 Final Thoughts 113
APPENDIXES
A References 121
B Workshop Agenda 131
C Workshop Statement of Task 139
Thesis Proposal, as presented for dissertation proposal defenseHeather Piwowar
The slides I presented for my PhD proposal defense for my project, "Foundational studies for measuring the impact, prevalence, and patterns of publicly sharing biomedical research data." Dept of Biomedical Informatics, University of Pittsburgh.
Inference of natural selection in human populations and cancersTÀI LIỆU NGÀNH MAY
Để xem full tài liệu Xin vui long liên hệ page để được hỗ trợ
: https://www.facebook.com/thuvienluanvan01
HOẶC
https://www.facebook.com/garmentspace/
https://www.facebook.com/thuvienluanvan01
https://www.facebook.com/thuvienluanvan01
tai lieu tong hop, thu vien luan van, luan van tong hop, do an chuyen nganh
Cemal H. Guvercin MedicReS 5th World Congress MedicReS
Ethical Issues in Artifical Intelligence Applied to Medicine Presentation to MedicReS 5th World Congress on October 19,25,2015 in New York by Cemal H. Guvercin, MD, PhD
Bullying—long tolerated as just a part of growing up—finally has been recognized as a substantial and preventable health problem. Bullying is associated with anxiety, depression, poor school performance, and future
delinquent behavior among its targets, and reports regularly surface of youth who have committed suicide at least in part because of intolerable bullying. Bullying can also have harmful effects on children who bully, on
bystanders, on school climates, and on society at large. Bullying can occur at all ages, from before elementary school to after high school. It can take the form of physical violence, verbal attacks, social isolation, spreading
rumors, or cyber bullying.
Increased concern about bullying has led 49 states and the District of Columbia to enact anti-bullying legislation since 1999. In addition, researchon the causes, consequences, and prevention of bullying has expanded greatly in recent decades. However, major gaps still exist in the understanding of bullying and of interventions that can prevent or mitigate the effectsof bullying.
This publication examines reviewed research on bullying
prevention and intervention efforts as well as efforts in related areas of research and practice, implemented in a range of contexts and settings, including
• Schools
• Peers
• Families
• Communities
• Laws and Public Policies
• Technology
1 Introduction and Overview 1
PART I
UNDERSTANDING BULLYING
2 Overview of Bullying and Victimization 9
3 Targets of Bullying and Bullying Behavior 19
PART II
CONTEXTS FOR PREVENTION AND INTERVENTION
4 School-Based Interventions 35
5 Family-Focused Interventions 49
6 Technology-Based Interventions 57
7 Community-Based Interventions 65
8 Peer-Led and Peer-Focused Programs 73
9 Laws and Public Policies 81
PART III
FUTURE DIRECTIONS AND OVERALL THEMES
10 Translating Bullying Research into Policy and Practice 91
11 Reflections of School Personnel and Student Perspectives 103
12 Final Thoughts 113
APPENDIXES
A References 121
B Workshop Agenda 131
C Workshop Statement of Task 139
This presentation was given at the Federation of European Biochemical Societies (FEBS) Congress in Prague during July 2009. It offers some reflections on both the why and how to for introducing an ethics component into bioscience courses. Particular emphasis is placed on the use of case studies, including scenarios posed in video clips (for copyright reasons the latter are not included here).
Presentation (c) Chris Willmott, 2009
A poll conducted in March 2013 by the Pew Research Center and Smithsonian magazine to gauge how much the American public knows about general science concepts. One of the questions asks which natural resource is extracted using fracking. Only 51% knew that is it natural gas.
Please enjoy the latest issue of our weekly Newsletter. Disfruten la última edición de nuestro Boletin semanal. Desfrute da mais recente edição da nossa Newsletter semanal.
DIYgenomics: an open platform for citizen scienceMelanie Swan
DIYgenomics (www.DIYgenomics.org) is a new platform bringing citizen scientists together to run peer cohort research studies and conduct novel research linking genetic data and physical biomarkers. Some norms are developing in response to the variety of community-based research issues that arise such as adaptive studies, informed consent, security, anonymity, and study design.
Citizen science - theory, practice & policy workshopMuki Haklay
These slides are from a 3.5h workshop, as part of the Israeli Geographical Association, Jerusalem, 14 Dec 2015. The workshop provided knowledge of the field of citizen science and current trends that influence it; Helped participants to understand the principles and practical aspects of designing a citizen science project; Included a session with hands-on experience of citizen science activity; Learn about additional resources that can be used to design and run citizen science projects; Understand the policy trends that are influencing the field.
Many of the slides are from previous talks with organisation and ordered in a way that they are suitable for the workshop
Personal Genomes: what can I do with my data?Melanie Swan
Biology evolved to be just good enough to survive and genomics provides the critical next-generation toolkit for its greater exploitation. Genomics is already starting to be medically actionable and is likely to become increasingly useful over time. This presentation discusses how your genetic information is already useful today,
Philosophy of Biological Cell Repair informs Geoethical Nanotechnology: Cellular repair is an age-old function in biology. This talk examines the cellular process of repair in philosophical terms. Biologically, wound-healing is the primary form of cellular repair, drawing on numerous cell types and the extracellular matrix to perform a variety of operations during the phases of inflammation, proliferation, and maturation. Philosophically, these functions can be discussed from a systems theory perspective, through the concepts pairs of parts-whole, autonomy-dependency, self-other, sickness-wellness, and scarcity-abundance. Understanding cellular repair at the theory level could facilitate the development of nanotechnology solutions that augment biological processes in ways that are congruently geoethical with nature’s ethos.
2016 Data Commons and Data Science Workshop June 7th and June 8th 2016. Genomic Data Commons, FAIR, NCI and making data more findable, publicly accessible, interoperable (machine readable), reusable and support recognition and attribution
This presentation was given at the Federation of European Biochemical Societies (FEBS) Congress in Prague during July 2009. It offers some reflections on both the why and how to for introducing an ethics component into bioscience courses. Particular emphasis is placed on the use of case studies, including scenarios posed in video clips (for copyright reasons the latter are not included here).
Presentation (c) Chris Willmott, 2009
A poll conducted in March 2013 by the Pew Research Center and Smithsonian magazine to gauge how much the American public knows about general science concepts. One of the questions asks which natural resource is extracted using fracking. Only 51% knew that is it natural gas.
Please enjoy the latest issue of our weekly Newsletter. Disfruten la última edición de nuestro Boletin semanal. Desfrute da mais recente edição da nossa Newsletter semanal.
DIYgenomics: an open platform for citizen scienceMelanie Swan
DIYgenomics (www.DIYgenomics.org) is a new platform bringing citizen scientists together to run peer cohort research studies and conduct novel research linking genetic data and physical biomarkers. Some norms are developing in response to the variety of community-based research issues that arise such as adaptive studies, informed consent, security, anonymity, and study design.
Citizen science - theory, practice & policy workshopMuki Haklay
These slides are from a 3.5h workshop, as part of the Israeli Geographical Association, Jerusalem, 14 Dec 2015. The workshop provided knowledge of the field of citizen science and current trends that influence it; Helped participants to understand the principles and practical aspects of designing a citizen science project; Included a session with hands-on experience of citizen science activity; Learn about additional resources that can be used to design and run citizen science projects; Understand the policy trends that are influencing the field.
Many of the slides are from previous talks with organisation and ordered in a way that they are suitable for the workshop
Personal Genomes: what can I do with my data?Melanie Swan
Biology evolved to be just good enough to survive and genomics provides the critical next-generation toolkit for its greater exploitation. Genomics is already starting to be medically actionable and is likely to become increasingly useful over time. This presentation discusses how your genetic information is already useful today,
Philosophy of Biological Cell Repair informs Geoethical Nanotechnology: Cellular repair is an age-old function in biology. This talk examines the cellular process of repair in philosophical terms. Biologically, wound-healing is the primary form of cellular repair, drawing on numerous cell types and the extracellular matrix to perform a variety of operations during the phases of inflammation, proliferation, and maturation. Philosophically, these functions can be discussed from a systems theory perspective, through the concepts pairs of parts-whole, autonomy-dependency, self-other, sickness-wellness, and scarcity-abundance. Understanding cellular repair at the theory level could facilitate the development of nanotechnology solutions that augment biological processes in ways that are congruently geoethical with nature’s ethos.
2016 Data Commons and Data Science Workshop June 7th and June 8th 2016. Genomic Data Commons, FAIR, NCI and making data more findable, publicly accessible, interoperable (machine readable), reusable and support recognition and attribution
Presentation "The Impact of All Data on Healthcare"
Keith Perry
Associate VP & Deputy CIO
UT MD Anderson Cancer Center
With continuing advancement in both technology and medicine, the drive is on to make all data meaningful to drive medical discovery and create actionable outcomes. With tools and capabilities to capture more data than ever before, the challenge becomes linking existing structured and unstructured clinical data with genomic data to increase the industry’s analytical footprint.
Learning Objectives:
∙ Discuss the need to make all data meaningful in order to speed discovery of new knowledge
∙ Provide examples of an analytical direction that supports evolution in medicine
∙ Expose the challenges facing the industry with respect to ~omits
Presentation for teaching faculty about resources, data, issues, and strategies for including personal genomics in the classroom, within the context of precision medicine as an overarching theme.
Advancing Convergence and Innovation in Cancer ResearchJerry Lee
Describes NCI's Center for Strategic Scientific Initiatives activities (2005 - 2017) as well as data and technology activities of the 2016 White House Cancer Moonshot Task Force (2016 - 2017).
Towards an Environmental Health Sciences Ontology:CHEAR to HHEAR and BeyondDeborah McGuinness
The National Institute of Environmental Health Sciences (NIEHS) supported a Children's Health Exposure Analysis Repository(CHEAR) program that needed to integrate data across exposure science and health. We led the data science effort of this program and design the CHEAR ontology to support data integration and to leverage a wide range of existing ontologies and vocabularies. We are refactoring the ontology to support human health (instead of just aiming to support child health, and broadening support a broad range of environmental health sciences applications.
University of Miami's Clinical and Translational Sciences Institute (CTSI) runs a bootcamp course for medical residents & fellows and postdocs. This is my 2012 version of "Questions for knowledge creators" lecture.
NCI Cancer Genomics, Open Science and PMI: FAIR Warren Kibbe
Talk given to the NLM Fellows on July 8, 2016. Touches on Cancer Genomics, Open Science and PMI: FAIR in NCI genomics thinking and projects. Includes discussion of the Genomic Data Commons (GDC), Cancer Data Ecosystem, Data sharing, and the NCI cancer clinical trials open API.
The slide presentation that preceded of the annual Health Datapalooza in Washington DC, PCORI was pleased to participate in the latest installment in the Health Data Consortium and PricewaterhouseCoopers (PwC) Innovators in Health Data Series, a webinar featuring PCORI Executive Director Joe Selby, MD, MPH; NIH Director and PCORI Board of Governors member Francis Collins, MD, PhD; and Philip Bourne, PhD, NIH’s Associate Director for Data Science.
From Research to Practice - New Models for Data-sharing and Collaboration to ...Health Data Consortium
Watch the webinar here: http://encore.meetingbridge.com/MB005418/140528/
Webinar transcript: http://hdc.membershipsoftware.org/Files/webinars/HDC-PwC%20NIH%20&%20PCORI%20Webinar%20Transcript%205_28_14.pdf
Patient-Centered Outcomes Research Institute (PCORI) Executive Director Joe Selby, MD, MPH; National Institutes of Health (NIH) Director and PCORI Board of Governors member Francis Collins, MD, PhD; and NIH Associate Director for Data Science Philip Bourne, PhD discussed new and emerging trends in big data for health, including:
- How researchers, patients, clinicians, and others are forging new models for data-sharing.
- Leveraging the quantity, variety, and analytic potential of health-related data for research and practice.
- Addressing patients’ perspectives, needs, and concerns in creating new opportunities for innovation and translational science.
- Exciting initiatives such as PCORnet, the National Patient-Centered Clinical Research Network initiative that PCORI is now helping to develop, and related open data and technology efforts such - as the NIH Health Systems Collaboratory and Big Data to Knowledge (BD2K) initiative.
Discover more health data resources on our website at http://www.healthdataconsortium.org/
Sherri Rose wrote a fascinating article about statistician’s role in big data. One thing I really liked was this line: “This may require implementing commonly used methods, developing a new method, or integrating techniques from other fields to answer our problem.” I really like the idea that integrating and applying standard methods in new and creative ways can be viewed as a statistical contribution.
Advancing Innovation and Convergence in Cancer Research: US Federal Cancer Mo...Jerry Lee
Special Seminar at the 8th Taiwan Biosignatures Workshop to share overall work of NCI's Center for Strategic Scientific Initiatives since 2003 as well as CSSI's influence on select projects initiated by the 2016 WH Cancer Moonshot Task Force that include Applied Proteogenomics Organizational Learning and Outcomes (APOLLO) network, International Cancer Proteogenome Consortium, and the Blood Profiling Atlas in Cancer (BloodPAC) commons.
Intro to Big Data session, AAMC GREAT/GRAND Meeting, 2014Richard Bookman
Introductory remarks for the Big Data in Biomedical Research and Training session at the annual meeting of the AAMC GREAT & GRAND groups. Fort Worth, Texas, 9/19/2014
Opening remarks and framing for "Research 3.0: Accelerating Discovery in a Digital Universe" at the 2012 joint meeting of the AAMC GREAT and GRAND groups.
See also the plenary session talks by Anita de Waard, John Wilbanks and Cameron Neylon. All on slideshare.net.
What is greenhouse gasses and how many gasses are there to affect the Earth.moosaasad1975
What are greenhouse gasses how they affect the earth and its environment what is the future of the environment and earth how the weather and the climate effects.
The ability to recreate computational results with minimal effort and actionable metrics provides a solid foundation for scientific research and software development. When people can replicate an analysis at the touch of a button using open-source software, open data, and methods to assess and compare proposals, it significantly eases verification of results, engagement with a diverse range of contributors, and progress. However, we have yet to fully achieve this; there are still many sociotechnical frictions.
Inspired by David Donoho's vision, this talk aims to revisit the three crucial pillars of frictionless reproducibility (data sharing, code sharing, and competitive challenges) with the perspective of deep software variability.
Our observation is that multiple layers — hardware, operating systems, third-party libraries, software versions, input data, compile-time options, and parameters — are subject to variability that exacerbates frictions but is also essential for achieving robust, generalizable results and fostering innovation. I will first review the literature, providing evidence of how the complex variability interactions across these layers affect qualitative and quantitative software properties, thereby complicating the reproduction and replication of scientific studies in various fields.
I will then present some software engineering and AI techniques that can support the strategic exploration of variability spaces. These include the use of abstractions and models (e.g., feature models), sampling strategies (e.g., uniform, random), cost-effective measurements (e.g., incremental build of software configurations), and dimensionality reduction methods (e.g., transfer learning, feature selection, software debloating).
I will finally argue that deep variability is both the problem and solution of frictionless reproducibility, calling the software science community to develop new methods and tools to manage variability and foster reproducibility in software systems.
Exposé invité Journées Nationales du GDR GPL 2024
Nutraceutical market, scope and growth: Herbal drug technologyLokesh Patil
As consumer awareness of health and wellness rises, the nutraceutical market—which includes goods like functional meals, drinks, and dietary supplements that provide health advantages beyond basic nutrition—is growing significantly. As healthcare expenses rise, the population ages, and people want natural and preventative health solutions more and more, this industry is increasing quickly. Further driving market expansion are product formulation innovations and the use of cutting-edge technology for customized nutrition. With its worldwide reach, the nutraceutical industry is expected to keep growing and provide significant chances for research and investment in a number of categories, including vitamins, minerals, probiotics, and herbal supplements.
THE IMPORTANCE OF MARTIAN ATMOSPHERE SAMPLE RETURN.Sérgio Sacani
The return of a sample of near-surface atmosphere from Mars would facilitate answers to several first-order science questions surrounding the formation and evolution of the planet. One of the important aspects of terrestrial planet formation in general is the role that primary atmospheres played in influencing the chemistry and structure of the planets and their antecedents. Studies of the martian atmosphere can be used to investigate the role of a primary atmosphere in its history. Atmosphere samples would also inform our understanding of the near-surface chemistry of the planet, and ultimately the prospects for life. High-precision isotopic analyses of constituent gases are needed to address these questions, requiring that the analyses are made on returned samples rather than in situ.
Salas, V. (2024) "John of St. Thomas (Poinsot) on the Science of Sacred Theol...Studia Poinsotiana
I Introduction
II Subalternation and Theology
III Theology and Dogmatic Declarations
IV The Mixed Principles of Theology
V Virtual Revelation: The Unity of Theology
VI Theology as a Natural Science
VII Theology’s Certitude
VIII Conclusion
Notes
Bibliography
All the contents are fully attributable to the author, Doctor Victor Salas. Should you wish to get this text republished, get in touch with the author or the editorial committee of the Studia Poinsotiana. Insofar as possible, we will be happy to broker your contact.
Deep Behavioral Phenotyping in Systems Neuroscience for Functional Atlasing a...Ana Luísa Pinho
Functional Magnetic Resonance Imaging (fMRI) provides means to characterize brain activations in response to behavior. However, cognitive neuroscience has been limited to group-level effects referring to the performance of specific tasks. To obtain the functional profile of elementary cognitive mechanisms, the combination of brain responses to many tasks is required. Yet, to date, both structural atlases and parcellation-based activations do not fully account for cognitive function and still present several limitations. Further, they do not adapt overall to individual characteristics. In this talk, I will give an account of deep-behavioral phenotyping strategies, namely data-driven methods in large task-fMRI datasets, to optimize functional brain-data collection and improve inference of effects-of-interest related to mental processes. Key to this approach is the employment of fast multi-functional paradigms rich on features that can be well parametrized and, consequently, facilitate the creation of psycho-physiological constructs to be modelled with imaging data. Particular emphasis will be given to music stimuli when studying high-order cognitive mechanisms, due to their ecological nature and quality to enable complex behavior compounded by discrete entities. I will also discuss how deep-behavioral phenotyping and individualized models applied to neuroimaging data can better account for the subject-specific organization of domain-general cognitive systems in the human brain. Finally, the accumulation of functional brain signatures brings the possibility to clarify relationships among tasks and create a univocal link between brain systems and mental functions through: (1) the development of ontologies proposing an organization of cognitive processes; and (2) brain-network taxonomies describing functional specialization. To this end, tools to improve commensurability in cognitive science are necessary, such as public repositories, ontology-based platforms and automated meta-analysis tools. I will thus discuss some brain-atlasing resources currently under development, and their applicability in cognitive as well as clinical neuroscience.
DERIVATION OF MODIFIED BERNOULLI EQUATION WITH VISCOUS EFFECTS AND TERMINAL V...Wasswaderrick3
In this book, we use conservation of energy techniques on a fluid element to derive the Modified Bernoulli equation of flow with viscous or friction effects. We derive the general equation of flow/ velocity and then from this we derive the Pouiselle flow equation, the transition flow equation and the turbulent flow equation. In the situations where there are no viscous effects , the equation reduces to the Bernoulli equation. From experimental results, we are able to include other terms in the Bernoulli equation. We also look at cases where pressure gradients exist. We use the Modified Bernoulli equation to derive equations of flow rate for pipes of different cross sectional areas connected together. We also extend our techniques of energy conservation to a sphere falling in a viscous medium under the effect of gravity. We demonstrate Stokes equation of terminal velocity and turbulent flow equation. We look at a way of calculating the time taken for a body to fall in a viscous medium. We also look at the general equation of terminal velocity.
Earliest Galaxies in the JADES Origins Field: Luminosity Function and Cosmic ...Sérgio Sacani
We characterize the earliest galaxy population in the JADES Origins Field (JOF), the deepest
imaging field observed with JWST. We make use of the ancillary Hubble optical images (5 filters
spanning 0.4−0.9µm) and novel JWST images with 14 filters spanning 0.8−5µm, including 7 mediumband filters, and reaching total exposure times of up to 46 hours per filter. We combine all our data
at > 2.3µm to construct an ultradeep image, reaching as deep as ≈ 31.4 AB mag in the stack and
30.3-31.0 AB mag (5σ, r = 0.1” circular aperture) in individual filters. We measure photometric
redshifts and use robust selection criteria to identify a sample of eight galaxy candidates at redshifts
z = 11.5 − 15. These objects show compact half-light radii of R1/2 ∼ 50 − 200pc, stellar masses of
M⋆ ∼ 107−108M⊙, and star-formation rates of SFR ∼ 0.1−1 M⊙ yr−1
. Our search finds no candidates
at 15 < z < 20, placing upper limits at these redshifts. We develop a forward modeling approach to
infer the properties of the evolving luminosity function without binning in redshift or luminosity that
marginalizes over the photometric redshift uncertainty of our candidate galaxies and incorporates the
impact of non-detections. We find a z = 12 luminosity function in good agreement with prior results,
and that the luminosity function normalization and UV luminosity density decline by a factor of ∼ 2.5
from z = 12 to z = 14. We discuss the possible implications of our results in the context of theoretical
models for evolution of the dark matter halo mass function.
Earliest Galaxies in the JADES Origins Field: Luminosity Function and Cosmic ...
Univ of Miami CTSI: Citizen science seminar; Oct 2014
1. Citizen Science: Building REALLY
Large Teams to Get Research Done
or
<…with apologies to Pirandello…>
8 short stories in search of authority
Richard J. Bookman, PhD
rbookman@miami.edu
@rbookman
Oct 8, 2014
UM CTSI Seminar Series
7. Science is the belief in
the ignorance of experts.
Richard Feynman,
“What is Science?”,
address to science teachers, 1966
http://img.youtube.com/vi/_ah7f-1M2Sg/hqdefault.jpg
8. Crowdsourcing is not new
“The greatest improvements…have been the
effects of the division of labor.”
Adam Smith,
Wealth of Nations, 1776
31. Game Players Contribute to Research
• Games are an effective interface enabling non-experts to work on
scientific problems
• Game Players working alone or together can solve puzzles that
algorithms (and experts) cannot.
• In aggregate, performance measures of non-experts can meet/exceed
experts
• Games can be used to train algorithms to work better
couchj@mail.nih.gov
40. Abstract
Patients with serious diseases may experiment with drugs
that have not received regulatory approval. Online patient
communities structured around quantitative outcome data
have the potential to provide an observational environment
to monitor such drug usage and its consequences. Here
we describe an analysis of data reported on the website
PatientsLikeMe by patients with amyotrophic lateral sclerosis (ALS)
who experimented with lithium carbonate treatment.
To reduce potential bias owing to lack of randomization, we
developed an algorithm to match 149 treated patients to multiple
controls (447 total) based on the progression of their disease course.
At 12 months after treatment, we found no effect of lithium on
disease progression. Although observational studies using unblinded
data are not a substitute for double- blind randomized control trials,
this study reached the same conclusion as subsequent randomized
trials,
http://www.nature.com/nbt/journal/v29/n5/pdf/nbt.1837.pdf
41. And what if the science is about
citizen health?
“What I’ve found to be most amazing about these
forums thus far is the ability of patients to identify
common side effects, formulate solutions, test
them, and confirm their general efficacy all in a
matter of days, when it would take researchers
weeks or even months to generate the same
knowledge.”—
Patient with ALS discussing potential treatments on
the forum of the ALS Therapy Development Institute
47. Citizen Science Working Group
Chair: Dinah Singer, Ph.D. Director, Division of Cancer Biology
Coordinators: Jennifer Couch, Ph.D., Elizabeth Gillanders, Ph.D. & Steve Becker, Ph.D.
Members
Stephanie Archer, Ph.D.
Clinical Trials Specialist
Pregnancy & Perinatology Branch
The Eunice Kennedy Shriver National
Institute of Child Health and Human
Development (NICHD)
Vivien Bonazzi, Ph.D.
Program Director
Division of Genome Sciences
National Human Genome Research
Institute (NHGRI)
Olga Brazhnik, Ph.D.
Computer Scientist
Division of Biomedical Technology
National Center for Advancing
Translational Science (NCATS)
Robin Brown, M.S.
Program Associate Director
Division of Cancer Biology
National Cancer Institute (NCI)
Charlisse Caga-Anan, J.D.
Program Director
Division of Cancer Control and
Population Sciences
National Cancer Institute (NCI)
Vinod Charles, Ph.D.
Scientific Review Officer
Division of Extramural Activities
National Institute of Mental Health (NIMH)
Richard Conroy, Ph.D.
Program Director
Division of Applied Science and Technology
National Institute of Biomedical Imaging and
Bioengineering (NIBIB)
Christina Daulton
Educational Outreach Specialist
Division of Policy, Communications, and
Education Staff
National Human Genome Research Institute
(NHGRI)
Allen Dearry, Ph.D.
Director
Office of Scientific Information Management
National Institute of Environmental Health
Sciences (NIEHS)
Leslie Derr, Ph.D.
Program Director
NIH Common Fund in the Office of Strategic
Coordination
Office of the Director, National Institutes of
Health
Triesta Fowler-Lee, M.D.
Medical Officer
Public Information and
Communications Branch
National Institute of Child Health and
Human Development (NICHD)
Gregg Furie, M.D., M.H.S.
Health Scientist
Office of Behavioral and Social
Sciences Research
Office of the Director, National
Institutes of Health
Jean McEwen, J.D., Ph.D.
Program Director
Division of Genomics and Society
National Human Genome Research
Institute (NHGRI)
Lita Proctor, Ph.D.
Program Director
Division of Genome Sciences
National Human Genome Research
Institute (NHGRI)
Krystyna Rys-Sikora, Ph.D.
Director
Kidney Acute Injury Basic and
Chronic Kidney Disease Basic
Programs
Director, Kidney T32 Program
National Institute of Diabetes and
Digestive and Kidney Diseases
(NIDDK)
Yasaman Shirazi, Ph.D.
Chief
Scientific Review Branch
National Institute of Dental and
Craniofacial Research (NIDCR)
Carol Weil, J.D.
Program Director
Ethical and Regulatory Affairs
National Cancer Institute Cancer
Diagnosis Program
National Cancer Institute (NCI)
48. Citizen Science Consortium
Citizen
Science
Resource
Centers
Data
Science
Center
ELSI
Challenge
Resource
Center
Games
Data Contribution
& Collection
Data analysis
Coordinating
Center
NIH Citizen Science Interest Group
External Advisory Board
Deliverables
•
•
•
•
Rigorously tested
methods validated on
biomedical research
questions
Best practices: an
understanding of which
approaches work best for
categories of research
questions
Clearinghouse:
dissemination of citizen
science opportunities and
methods.
Evaluation criteria for
citizen science methods
in biomedical research
http://dpcpsi.nih.gov/sites/default/files/Citizen_Science_presentation_to_CoC_Jan31.pdf
49. •
•
•
•
•
•
What We’ve Learned- Challenges
Citizen Science methodologies are new to biomedical research.
Current biomedical research policies, regulations and practices were not
designed for Citizen Science methods.
The creation of flexible infrastructure and governance models that enable
multiple levels of participation while maintaining data security, integrity, and
scientific rigor is essential.
Methods need to be developed/adapted and rigorously tested in biomedical
research so we know what works and doesn’t work.
Dissemination of tools, best practices, and training resources will be important
for researchers and citizens to use citizen science methods effectively.
Evaluation criteria for Citizen Science approach to biomedical research needs
to be developed.
http://dpcpsi.nih.gov/sites/default/files/Citizen_Science_presentation_to_CoC_Jan31.pdf
59. Ethical, Legal and Social
Implications
• Virtual sweatshop
• IP
• Misrepresentation of task
• Repression 2.0
• Disruptive participants
60. Ethical, Legal and Social
Implications
Some solutions
• Trusted platforms
• Open algorithms
• Consent to play/participate
• Identity Verification
• Credit or badge system
Provide outline of talk:
Intro – incl some historical background & perspective.
Tell 8 stories about 8 different citizen projects, emphasizing special features of each,
these are all filled with exciting potential…
then consider NIH’s views and current plans around citizen science
then discuss some challenges and limitations.
OVERALL GOAL:
Hope to help you think about how you might use citizen science approaches in your own research.
Physics knows a lot of building large teams
Here’s a big team in science….just 1 of the instruments at the LHC
But this isn’t a big team, by the standards of citizen science.
https://library.uthsc.edu/exhibits/stamps/physicians.htm – mendel
http://pballew.blogspot.com/2011/11/on-this-day-in-math-nov-9.html - newton
http://rainbowstampclub.blogspot.com/2009/02/new-stamp-on-darwin-from-italy.html - Darwin
http://www.philatelia.net/classik/stamps/?id=12787 – Aristotle
So how much labor is out there…available for science?
Mention amazon mechanical turk
2007.
In 7 months, 900,000 galaxies classified….through 50 million classifications.
Hanny Van Arkel, a dutch school teacher……
Give peas a chance
The PeasCorps
Shift to Polymath
Now start stories in life sciences and biomedical research
Start w/ cancer and biopsy specimens – cell slider
Shift to eyewire
Shift to foldit
David Baker, UWash, Zoran Popovic
Rosetta@Home, modeled after SETI@Home – a screensaver.
Then got feedback from people staring at their screensavers with suggestions.
In 4 months, 50,000 users. After 1 year, 200,000.
Includes new algorithm development…and a PNAS paper with gamer authors.
EBOLA
Shift to patients like me
Combine the chat rooms of the 80’s and 90’s with a structured data approach to documenting health.
Started in 2004; then ALS goes live in 2006.
PRO = patient reported outcomes
uBiome…..searchable database
It’s all so cool and disruptive and innovative and news-making and amazing and …….