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I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
Pushing	the	Bounds	of	Medicine	and	
Improving	Health	Around	the	World:	
Washington	University,	BJC	Healthcare,	and	
the	Institute	for	Informatics	(I2)
Philip	R.O.	Payne,	PhD,	FACMI
Robert	J.	Terry	Professor	and	Director,	Institute	for	Informatics
Washington	University	School	of	Medicine
Professor	of	Computer	Science	and	Engineering
Washington	University	School	of	Engineering	and	Applied	Science
I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
• The greater St.	Louis	area is	home	to	
2,916,447	people
• In	2006,	St.	Louis	received the World	
Leadership Award for	urban renewal
• >40	colleges,	universities,	and	technical
schools
• The Cortext Innovation	Community
serves a	regional bio-tech,	life	science,	
and	information technology (IT)	start-
up hub
• Generating >3,800	tech-related jobs and	>500	
million in	investment in	the last 14	years
• Multiple incubators,	venture funds,	and	
innovation assets
• St.	Louis	ranked #1	on	the list of	
America's "fastest-growing cities for	
tech jobs"	according to	Fortune
Magazine	and	among the top	10	most
cost-effective to	do business	among
large metropolitan areas in	the US	
according to	KPMG
• Home	to	nine Fortune 500	companies:	
Express	Scripts,	Emerson	Electric,	
Monsanto,	Reinsurance	Group	of	
America,	Centene,	Peabody Energy,	
Ameren,	Graybar Electric,	and	Edward	
Jones	Investments.	
St.	Louis,		Missouri
I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
• Established in	1853
• Consistently	ranked	amongst	the	top	
25	universities	globally
• 7	graduate	and	undergraduate	
schools
• 14,385 students
• 3,759	faculty
• 645.6	million	in	annual	research	
funding
• 24	Nobel	Laureates
• 140,188	alumni
• 4th	ranking	among largest
employers in	St.	Louis	– St.	Louis	
Business	Journal	Book of	Lists 2016
• Motto:	Per	Veritatem Vis (Strength
Through	Truth)
Washington	University	in	St.	
Louis
I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
• 125-year	history
• Most	selective	medical	school	in	the	
United	States	(US)
• Comprehensive	healthcare	professional	
and	graduate	degree	programs
• Largest	MD/PhD	program	in	the	US
• Consistently	ranked	as	one	of	the	top	5	
research-intensive	medical	schools	in	
the	country
• >500	Million	(USD)	annually
• Serves	as	a	catalyst	for	the	St.	Louis	
biotech	and	startup	scene,	including	
the	Cortex	Innovation	District	
• Exclusive	clinical	partnership	with	BJC	
Healthcare
• Home	to	both	an	NCI-designated	
Comprehensive	Cancer	Center	(CCC)	
and	NCATS-designated	Clinical	and	
Translational	Research	Award	(CTSA)
• Also	home	to	the	Elizabeth	H.	and	
James	S.	McDonnell	Genome	Institute,	
one	of	the	top	3	large-scale	genome	
centers	in	the	US
Washington	University	in	St.	
Louis	School	of	Medicine
I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
• In	1993	Barnes	and	Jewish	Hospitals	
joined	with	Christian	Health	Services	to	
form	the	BJC	Health	System	
• Exclusive	partnership	with	Washington	
University	Physicians
• One	of	the	largest	not-for-profit	
integrated	delivery	networks	in	the	
United	States,	and	the	largest	in	the	
State	of	Missouri
• 15	hospitals	(urban,	regional,	
rural)
• Primary	care	network
• Specialty	network
• Provider-of-choice	for	HSA/HRA
• >	5.4M	covered	lives
• >	4.8	billion	(USD)	in	revenue	
(2016)
• BJC	HealthCare	hospitals	ranks	on	the	
U.S.	News	&	World	Report	Honor	Roll	
of	America's	top	Hospitals	and	Best	
Children's	Hospitals	
BJC	Healthcare
I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
Creating	a	Home	for	Informatics	at	Washington	
University:	The	Institute	for	Informatics	(I2)
ü Translational	Bioinformatics:	
Leveraging	our	basic	science	
capabilities	to	generate	an	actionable	
precision	medicine	knowledge-base	in	
high	priority	disease	areas
ü Learning	Healthcare	Systems:	
Connecting	actionable	knowledge	to	
high	throughput	and	fidelity	
phenotypes	derived	from	an	
exceptionally	diverse	population	and	
healthcare	delivery	network
ü Population	Health	Informatics:	Scaling	
precision	medicine	to	support	the	
health	and	wellness	of	at-risk	or	
underserved	populations	through	
data-driven	intervention	strategies.
Translating	Data	Into	Knowledge
I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
The	institute	for	informatics	will	help	focus	the	
informatics	landscape	at	the	School	of	Medicine	as	
we	seek	ways	to	transform	research,	education	
and	patient	care,	especially	in	support	of	precision	
medicine	and	efforts	to	improve	the	quality	of	
health	care	and	public	health	initiatives	locally,	
nationally	and	worldwide.
Source:	David	H.	Perlmutter	MD,	Executive	Vice	Chancellor	for	Medical	Affairs	
and	Dean	of	the	Washington	University	School	of	Medicine	in	St.	Louis
I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
I2 Pillars:	“Putting	the	Pieces	Together”
Innovation Education Support
Accelerating	Discovery	and	
Translation
Creating	Learning	Healthcare	
Systems
Scaling	to	Population	 Health
Evidence	
Generation
Healthcare
Delivery
“At	Scale”
In-Career	Learners
Practice	(Certificate,	MS)
K-12	&	UG	“Pipeline”
Investigators	(PhD)
Competency	Based	Curriculum
Advanced	Analytics
Research	Data	Mgmt
Bioinformatics	Pipelines
Secondary	use	and	
Instrumentation	of	EHR
Shared	Infrastructure	&	Project	
Design/Mgmt
I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
Philip	Payne,	PhD,	FACMI
DIRECTOR	
• Knowledge-based	approaches	to	the		discovery	and	analysis	of	bio-molecular		and	clinical	phenotypes	and	the	
ensuing		identification	of	precision	diagnostic		and	therapeutic	strategies	in	cancer
• Interventional	approaches	to	the	use		of	electronic	health	records	in	order		to	address	modifiable	risk	factors	
for disease	and	enable	patient-centered		decision	making
• The	study	of	human	factors	and		workflow	issues	surrounding	the	optimal		use	of	healthcare	information	
technology
Albert	M.	Lai,	PhD
CHIEF	RESEARCH	INFORMATION	
OFFICER	
• Clinical	research		informatics
• Clinical	informatics
• Consumer	health		informatics
• Telemedicine
• Usability
• Natural	language		processing
• Mobile	health
Po-Yin	Yen,	RN,	PhD
ASSISTANT	PROFESSOR,	CLINICAL	
INFORMATICS
• Usability
• Technology	acceptance
• Human	computer		interaction
• Literature	mining
• Data	visualization
• Workflow	analysis
• Time	motion	study
Randi	Foraker,	MA,PhD,	FAHA
ASSOCIATE	PROFESSOR,	DEPARTMENT	
OF	MEDICINE,		DIVISION	OF	GENERAL	
MEDICAL	SCIENCES
• Approaches	for	the	integration	of	socioeconomic	and		
patient-reported	outcome		data	with	electronic	health		
record	data
• Interventional	approaches		to	the	use	of	electronic
• health	records	in	order	to		address	
modifiable	risk		factors	for	disease	and		
enable	patient-centered	decision	making
• Study	design	methodology		and	data	
analysis
S.	Joshua	Swamidass,	MD,	PhD
ASSISTANT	PROFESSOR	OF	
PATHOLOGY	&	IMMUNOLOGY		
LABORATORY	&	GENOMIC	MEDICINE
• Metabolism
• Machine	learning
• Bioinformatics
• Biostatistics
• Chemical	informatics
• Drug	and	target	discovery
• Drug	design
Tiffani	J.	Bright,	PhD
DIRECTOR,	INFORMATICS	
DEVELOPMENT
• clinical	decision	support	(CDS)
• knowledge	representation
• user	needs	assessment
• mobile	health	technology	(mHealth)
• patient-centered	outcomes	research	
(PCOR),
• and	usability	evaluation
Leaders	in	Informatics	Science	and	Practice
I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
Translating	Data	Into	Action:	
Positioning	Informatics	as	an	Interventional	Discipline
Payne	PR,	Lussier Y,	Foraker	RE,	Embi PJ.	Rethinking	the	role	and	impact	of	health	information	technology:	informatics	as	an	
interventional	discipline.	BMC	medical	informatics	and	decision	making.	2016	Mar	29;16(1):1.
I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
Research	With	Impact:	From	Molecules	to	Populations
Viewpoint
Enabling Open Science for Health Research: Collaborative
Informatics Environment for Learning on Health Outcomes (CIELO)
Philip Payne1
, PhD; Omkar Lele2
, MS, MBA; Beth Johnson3
, MPH; Erin Holve4
, MPH, MPP, PhD
1
Institute for Informatics, School of Medicine, Washington University in St. Louis, St. Louis, MO, United States
2
Department of Biomedical Informatics, College of Medicine, The Ohio State University, Columbus, OH, United States
3
AcademyHealth, Washington, DC, United States
4
Department of Health Care Finance, Government of the District of Columbia, Washington, DC, United States
Corresponding Author:
Philip Payne, PhD
Institute for Informatics
School of Medicine
Washington University in St. Louis
660 South Euclid Avenue
MS 8102-13-610
St. Louis, MO, 63110
United States
Phone: 1 314 747 6119
Fax: 1 314 747 6119
Email: prpayne@wustl.edu
Abstract
Background: There is an emergent and intensive dialogue in the United States with regard to the accessibility, reproducibility,
and rigor of health research. This discussion is also closely aligned with the need to identify sustainable ways to expand the
national research enterprise and to generate actionable results that can be applied to improve the nation’s health. The principles
and practices of Open Science offer a promising path to address both goals by facilitating (1) increased transparency of data and
methods, which promotes research reproducibility and rigor; and (2) cumulative efficiencies wherein research tools and the output
of research are combined to accelerate the delivery of new knowledge in proximal domains, thereby resulting in greater productivity
and a reduction in redundant research investments.
Objectives: AcademyHealth’s Electronic Data Methods (EDM) Forum implemented a proof-of-concept open science platform
for health research called the Collaborative Informatics Environment for Learning on Health Outcomes (CIELO).
Methods: The EDM Forum conducted a user-centered design process to elucidate important and high-level requirements for
creating and sustaining an open science paradigm.
Results: By implementing CIELO and engaging a variety of potential users in its public beta testing, the EDM Forum has been
able to elucidate a broad range of stakeholder needs and requirements related to the use of an open science platform focused on
health research in a variety of “real world” settings.
Conclusions: Our initial design and development experience over the course of the CIELO project has provided the basis for
a vigorous dialogue between stakeholder community members regarding the capabilities that will add the greatest value to an
open science platform for the health research community. A number of important questions around user incentives, sustainability,
and scalability will require further community dialogue and agreement.
(J Med Internet Res 2017;19(7):e276) doi:10.2196/jmir.6937
KEYWORDS
healthcare research; information dissemination; open access to information; social networking; reproducibility of results
J Med Internet Res 2017 | vol. 19 | iss. 7 | e276 | p.1http://www.jmir.org/2017/7/e276/
(page number not for citation purposes)
Payne et alJOURNAL OF MEDICAL INTERNET RESEARCH
XSL•FO
RenderX
Active Use of Electronic Health Records
(EHRs) and Personal Health Records
(PHRs) for Epidemiologic Research: Sample
Representativeness and Nonresponse Bias in a
Study of Women During Pregnancy
Julie K Bower, PhD, MPH;i
Claire E. Bollinger;ii
Randi E. Foraker, PhD;i
Darryl B. Hood, PhD;ii
Abigail B. Shoben, PhD;iii
Albert M. Lai, PhDiv
i
Division of Epidemiology, The Ohio State University College of Public Health, ii
Division of Environmental Health Sciences, The Ohio University
College of Public Health, iii
Division of Biostatistics, The Ohio State University College of Public Health, iv
Institute for Informatics, Washington
University School of Medicine
Introduction: With the growing use of electronic medical records, electronic health records (EHRs), and
personal health records (PHRs) for health care delivery, new opportunities have arisen for population
health researchers. Our objective was to characterize PHR users and examine sample representativeness
and nonresponse bias in a study of pregnant women recruited via the PHR.
Design: Demographic characteristics were examined for PHR users and nonusers. Enrolled study
participants (responders, n=187) were then compared with nonresponders and a representative sample
of the target population.
Results: PHR patient portal users (34 percent of eligible persons) were older and more likely to be
White, have private health insurance, and develop gestational diabetes than nonusers. Of eligible
persons (all PHR users), 11 percent (187/1,713) completed a self-administered PHR based questionnaire.
Participants in the research study were more likely to be non-Hispanic White (90 percent versus 79
percent) and married (85 percent versus 77 percent), and were less likely to be Non-Hispanic Black (3
percent versus 12 percent) or Hispanic (3 percent versus 6 percent). Responders and nonresponders
were similar regarding age distribution, employment status, and health insurance status. Demographic
characteristics were similar between responders and nonresponders.
Discussion: Demographic characteristics of the study population differed from the general population,
cost-effectiveness.
ABSTRACT
Generating Evidence & Methods
to improve patient outcomes
eGEMs
1
Bower et al.: PHR Use for Epidemiologic Research
Published by EDM Forum Community, 2017
I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
Partnering	Around	the	Globe:	MDClone and	I2
• Establishing	a	new	paradigm	for	internal	
and	external	data	sharing	and	analytics	
capabilities	at	one	of	the	largest	
research-intensive	academic	health	
centers	in	the	United	States
• ”Democratizing”	data	access	in	order	to	
speed	insight	and	discovery	while	
reducing	risks	to	patient	privacy	and	
confidentiality
• Three	pilot	use	cases:
1) Integrated	analysis	of	multi-modal	
ICU	data
2) Prediction	of	patient	trajectories	
during	transitions	in	care
3) Generation	of	population	health	
dashboards
Creating	a	Culture	of“Data Entrepreneurs”	to	Achieve	a	Vision	of	Precise	and	
Knowledge-Driven	Healthcare	and Wellness	Promotion:	
Harnessing	Research,	Translating	into	Practice,	Scaling	to	Populations
I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E
Philip	R.O.	Payne,	PhD,	FACMI
Informatics.wustl.edu
prpayne@wustl.edu
@prpayne5
www.slideshare.net/prpayne5
Questions	or	Comments?

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mHealth Israel_Washington University in St Louis / BJC Healthcare, Institute for Informatics, Overview

  • 1. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E Pushing the Bounds of Medicine and Improving Health Around the World: Washington University, BJC Healthcare, and the Institute for Informatics (I2) Philip R.O. Payne, PhD, FACMI Robert J. Terry Professor and Director, Institute for Informatics Washington University School of Medicine Professor of Computer Science and Engineering Washington University School of Engineering and Applied Science
  • 2. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E • The greater St. Louis area is home to 2,916,447 people • In 2006, St. Louis received the World Leadership Award for urban renewal • >40 colleges, universities, and technical schools • The Cortext Innovation Community serves a regional bio-tech, life science, and information technology (IT) start- up hub • Generating >3,800 tech-related jobs and >500 million in investment in the last 14 years • Multiple incubators, venture funds, and innovation assets • St. Louis ranked #1 on the list of America's "fastest-growing cities for tech jobs" according to Fortune Magazine and among the top 10 most cost-effective to do business among large metropolitan areas in the US according to KPMG • Home to nine Fortune 500 companies: Express Scripts, Emerson Electric, Monsanto, Reinsurance Group of America, Centene, Peabody Energy, Ameren, Graybar Electric, and Edward Jones Investments. St. Louis, Missouri
  • 3. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E • Established in 1853 • Consistently ranked amongst the top 25 universities globally • 7 graduate and undergraduate schools • 14,385 students • 3,759 faculty • 645.6 million in annual research funding • 24 Nobel Laureates • 140,188 alumni • 4th ranking among largest employers in St. Louis – St. Louis Business Journal Book of Lists 2016 • Motto: Per Veritatem Vis (Strength Through Truth) Washington University in St. Louis
  • 4. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E • 125-year history • Most selective medical school in the United States (US) • Comprehensive healthcare professional and graduate degree programs • Largest MD/PhD program in the US • Consistently ranked as one of the top 5 research-intensive medical schools in the country • >500 Million (USD) annually • Serves as a catalyst for the St. Louis biotech and startup scene, including the Cortex Innovation District • Exclusive clinical partnership with BJC Healthcare • Home to both an NCI-designated Comprehensive Cancer Center (CCC) and NCATS-designated Clinical and Translational Research Award (CTSA) • Also home to the Elizabeth H. and James S. McDonnell Genome Institute, one of the top 3 large-scale genome centers in the US Washington University in St. Louis School of Medicine
  • 5. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E • In 1993 Barnes and Jewish Hospitals joined with Christian Health Services to form the BJC Health System • Exclusive partnership with Washington University Physicians • One of the largest not-for-profit integrated delivery networks in the United States, and the largest in the State of Missouri • 15 hospitals (urban, regional, rural) • Primary care network • Specialty network • Provider-of-choice for HSA/HRA • > 5.4M covered lives • > 4.8 billion (USD) in revenue (2016) • BJC HealthCare hospitals ranks on the U.S. News & World Report Honor Roll of America's top Hospitals and Best Children's Hospitals BJC Healthcare
  • 6. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E Creating a Home for Informatics at Washington University: The Institute for Informatics (I2) ü Translational Bioinformatics: Leveraging our basic science capabilities to generate an actionable precision medicine knowledge-base in high priority disease areas ü Learning Healthcare Systems: Connecting actionable knowledge to high throughput and fidelity phenotypes derived from an exceptionally diverse population and healthcare delivery network ü Population Health Informatics: Scaling precision medicine to support the health and wellness of at-risk or underserved populations through data-driven intervention strategies. Translating Data Into Knowledge
  • 7. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E The institute for informatics will help focus the informatics landscape at the School of Medicine as we seek ways to transform research, education and patient care, especially in support of precision medicine and efforts to improve the quality of health care and public health initiatives locally, nationally and worldwide. Source: David H. Perlmutter MD, Executive Vice Chancellor for Medical Affairs and Dean of the Washington University School of Medicine in St. Louis
  • 8. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E I2 Pillars: “Putting the Pieces Together” Innovation Education Support Accelerating Discovery and Translation Creating Learning Healthcare Systems Scaling to Population Health Evidence Generation Healthcare Delivery “At Scale” In-Career Learners Practice (Certificate, MS) K-12 & UG “Pipeline” Investigators (PhD) Competency Based Curriculum Advanced Analytics Research Data Mgmt Bioinformatics Pipelines Secondary use and Instrumentation of EHR Shared Infrastructure & Project Design/Mgmt
  • 9. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E Philip Payne, PhD, FACMI DIRECTOR • Knowledge-based approaches to the discovery and analysis of bio-molecular and clinical phenotypes and the ensuing identification of precision diagnostic and therapeutic strategies in cancer • Interventional approaches to the use of electronic health records in order to address modifiable risk factors for disease and enable patient-centered decision making • The study of human factors and workflow issues surrounding the optimal use of healthcare information technology Albert M. Lai, PhD CHIEF RESEARCH INFORMATION OFFICER • Clinical research informatics • Clinical informatics • Consumer health informatics • Telemedicine • Usability • Natural language processing • Mobile health Po-Yin Yen, RN, PhD ASSISTANT PROFESSOR, CLINICAL INFORMATICS • Usability • Technology acceptance • Human computer interaction • Literature mining • Data visualization • Workflow analysis • Time motion study Randi Foraker, MA,PhD, FAHA ASSOCIATE PROFESSOR, DEPARTMENT OF MEDICINE, DIVISION OF GENERAL MEDICAL SCIENCES • Approaches for the integration of socioeconomic and patient-reported outcome data with electronic health record data • Interventional approaches to the use of electronic • health records in order to address modifiable risk factors for disease and enable patient-centered decision making • Study design methodology and data analysis S. Joshua Swamidass, MD, PhD ASSISTANT PROFESSOR OF PATHOLOGY & IMMUNOLOGY LABORATORY & GENOMIC MEDICINE • Metabolism • Machine learning • Bioinformatics • Biostatistics • Chemical informatics • Drug and target discovery • Drug design Tiffani J. Bright, PhD DIRECTOR, INFORMATICS DEVELOPMENT • clinical decision support (CDS) • knowledge representation • user needs assessment • mobile health technology (mHealth) • patient-centered outcomes research (PCOR), • and usability evaluation Leaders in Informatics Science and Practice
  • 10. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E Translating Data Into Action: Positioning Informatics as an Interventional Discipline Payne PR, Lussier Y, Foraker RE, Embi PJ. Rethinking the role and impact of health information technology: informatics as an interventional discipline. BMC medical informatics and decision making. 2016 Mar 29;16(1):1.
  • 11. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E Research With Impact: From Molecules to Populations Viewpoint Enabling Open Science for Health Research: Collaborative Informatics Environment for Learning on Health Outcomes (CIELO) Philip Payne1 , PhD; Omkar Lele2 , MS, MBA; Beth Johnson3 , MPH; Erin Holve4 , MPH, MPP, PhD 1 Institute for Informatics, School of Medicine, Washington University in St. Louis, St. Louis, MO, United States 2 Department of Biomedical Informatics, College of Medicine, The Ohio State University, Columbus, OH, United States 3 AcademyHealth, Washington, DC, United States 4 Department of Health Care Finance, Government of the District of Columbia, Washington, DC, United States Corresponding Author: Philip Payne, PhD Institute for Informatics School of Medicine Washington University in St. Louis 660 South Euclid Avenue MS 8102-13-610 St. Louis, MO, 63110 United States Phone: 1 314 747 6119 Fax: 1 314 747 6119 Email: prpayne@wustl.edu Abstract Background: There is an emergent and intensive dialogue in the United States with regard to the accessibility, reproducibility, and rigor of health research. This discussion is also closely aligned with the need to identify sustainable ways to expand the national research enterprise and to generate actionable results that can be applied to improve the nation’s health. The principles and practices of Open Science offer a promising path to address both goals by facilitating (1) increased transparency of data and methods, which promotes research reproducibility and rigor; and (2) cumulative efficiencies wherein research tools and the output of research are combined to accelerate the delivery of new knowledge in proximal domains, thereby resulting in greater productivity and a reduction in redundant research investments. Objectives: AcademyHealth’s Electronic Data Methods (EDM) Forum implemented a proof-of-concept open science platform for health research called the Collaborative Informatics Environment for Learning on Health Outcomes (CIELO). Methods: The EDM Forum conducted a user-centered design process to elucidate important and high-level requirements for creating and sustaining an open science paradigm. Results: By implementing CIELO and engaging a variety of potential users in its public beta testing, the EDM Forum has been able to elucidate a broad range of stakeholder needs and requirements related to the use of an open science platform focused on health research in a variety of “real world” settings. Conclusions: Our initial design and development experience over the course of the CIELO project has provided the basis for a vigorous dialogue between stakeholder community members regarding the capabilities that will add the greatest value to an open science platform for the health research community. A number of important questions around user incentives, sustainability, and scalability will require further community dialogue and agreement. (J Med Internet Res 2017;19(7):e276) doi:10.2196/jmir.6937 KEYWORDS healthcare research; information dissemination; open access to information; social networking; reproducibility of results J Med Internet Res 2017 | vol. 19 | iss. 7 | e276 | p.1http://www.jmir.org/2017/7/e276/ (page number not for citation purposes) Payne et alJOURNAL OF MEDICAL INTERNET RESEARCH XSL•FO RenderX Active Use of Electronic Health Records (EHRs) and Personal Health Records (PHRs) for Epidemiologic Research: Sample Representativeness and Nonresponse Bias in a Study of Women During Pregnancy Julie K Bower, PhD, MPH;i Claire E. Bollinger;ii Randi E. Foraker, PhD;i Darryl B. Hood, PhD;ii Abigail B. Shoben, PhD;iii Albert M. Lai, PhDiv i Division of Epidemiology, The Ohio State University College of Public Health, ii Division of Environmental Health Sciences, The Ohio University College of Public Health, iii Division of Biostatistics, The Ohio State University College of Public Health, iv Institute for Informatics, Washington University School of Medicine Introduction: With the growing use of electronic medical records, electronic health records (EHRs), and personal health records (PHRs) for health care delivery, new opportunities have arisen for population health researchers. Our objective was to characterize PHR users and examine sample representativeness and nonresponse bias in a study of pregnant women recruited via the PHR. Design: Demographic characteristics were examined for PHR users and nonusers. Enrolled study participants (responders, n=187) were then compared with nonresponders and a representative sample of the target population. Results: PHR patient portal users (34 percent of eligible persons) were older and more likely to be White, have private health insurance, and develop gestational diabetes than nonusers. Of eligible persons (all PHR users), 11 percent (187/1,713) completed a self-administered PHR based questionnaire. Participants in the research study were more likely to be non-Hispanic White (90 percent versus 79 percent) and married (85 percent versus 77 percent), and were less likely to be Non-Hispanic Black (3 percent versus 12 percent) or Hispanic (3 percent versus 6 percent). Responders and nonresponders were similar regarding age distribution, employment status, and health insurance status. Demographic characteristics were similar between responders and nonresponders. Discussion: Demographic characteristics of the study population differed from the general population, cost-effectiveness. ABSTRACT Generating Evidence & Methods to improve patient outcomes eGEMs 1 Bower et al.: PHR Use for Epidemiologic Research Published by EDM Forum Community, 2017
  • 12. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E Partnering Around the Globe: MDClone and I2 • Establishing a new paradigm for internal and external data sharing and analytics capabilities at one of the largest research-intensive academic health centers in the United States • ”Democratizing” data access in order to speed insight and discovery while reducing risks to patient privacy and confidentiality • Three pilot use cases: 1) Integrated analysis of multi-modal ICU data 2) Prediction of patient trajectories during transitions in care 3) Generation of population health dashboards
  • 14. I N S T I T U T E F O R I N F O R M A T I C S | W A S H I N G T O N U N I V E R S I T Y S C H O O L O F M E D I C I N E Philip R.O. Payne, PhD, FACMI Informatics.wustl.edu prpayne@wustl.edu @prpayne5 www.slideshare.net/prpayne5 Questions or Comments?