1. Informatics-Enabled Community Engagement in the Washington Heights Informatics Infrastructure for Comparative Effectiveness Research (WICER) Project
Suzanne Bakken, PhD, RN, FAAN, FACMI
School of Nursing and Department of Biomedical Informatics
Columbia University
1R01HS019853, R01HS022961

2. Community Engagement in Context of the Learning Health Systems
Building a strong fabric of trust among stakeholders through communication and demonstration of value
Principles as a foundation for fabric of trust:
Build a shared learning environment
Engage health and health care, population and patient
Leverage existing programs and policies
Difficulty of building a strong fabric of trust among racial and ethnic minorities
Low participation rates in research studies
Low participation rates in biobanks
Limited use of information technologies for health-related purposes.

3. Goals of WICER
Comprehensive understanding of the Washington Heights/Inwood population
Facilitate research with this population
Demonstrate infrastructure capabilities for comparative effectiveness research

4. Washington Heights/Inwood
5 zip codes: 10031, 10032, 10033, 10034, 10040
Represents significant issues in health care disparities

5. WICER Components Research data warehouse - Wilcox
Research data explorer (RedX) and I2B2 for viewing research data warehouse – Wilcox
Informatics support for recruitment and integrating clinical and research workflows – Weng
Comparative effectiveness studies – Bigger, Feldman (Visiting Nurse Service of New York)
Community survey – Bakken, Boden-Albala, Fleck

6. Research Data Warehouse
WICER Data
Coordinator
Researcher
In patient
Out patient
Home care
Long term
Trial
Survey
Local
Databases
Clinical Encounters
Research Encounters
Research Data Warehouse
RedX
Integration Platform
Research Data Access
Data Access Expert
Clinician
Patient
Community Members

7. Community Engagement Survey design and implementation
Returning data to community
Role of informatics

8. Community Survey Demographics Anthropometric measures and vital signs
Including socio-economic status
Anthropometric measures and vital signs
Blood pressure, height, weight, waist circumference
Surveys (incorporate selected PROMIS measures) including
Nutrition
Physical activity
Social role performance
Health and illness perceptions
Self health assessment
Depression
Medication adherence
Quality of life
Health literacy
Baseline and follow-up approximately 1 year apart
Some overlap with BRFSS and NYC Community Health Survey – Yoon eGEMS publication

9. Survey Populations Community Outreach Center Community
800
Community
3,940
Ambulatory Clinics
1,200

10. Survey Design and Implementation
CTSA-funded Columbia-Community Partnership for Health (CCPH)
Free community blood pressure screening and education at CCPH
Focus groups to inform survey content
Data collection by bilingual community health workers from Washington Heights/Inwood in homes, community organizations, and local businesses as well as CCPH and clinics
Incorporation of snowball sampling methods
Compensation for participant time with incentives of value to residents (e.g., grocery coupons)
Asked about top health concerns

11. Building a Strong Fabric of Trust
Participation rates in research studies – increased enrollment rates for WICER referrals to other studies
Participation rates in biobanks – exceeded biospecimen collection goals
Use of information technologies for health-related purposes – only 7% had used information technology for health purposes, but most participants agreed to linkage of survey data to clinical data

12. Returning Data to the Community
Survey respondents
Community-based Organizations

13. Returning Survey Data to Participants
Established WICER visualization working group that includes investigators from a variety of disciplines including nursing, medicine, public health, biomedical informatics, engineering, human factors, communication, art, fashion, theater
Creation of infographics of varying levels of complexity based on cognitive tasks
Focus groups regarding preference and acceptability
Basic research regarding comprehension
Applied research related to actionability in consumer-facing and provider-facing applications
Process reported in Arcia et al. AMIA 2013

14. Key Lessons from Focus Groups
More is more
Culture matters

19. Risks of High Blood Pressure
Your Blood Pressure
Risks of High Blood Pressure
Stroke
Cerebrovascular
accident
Heart
attack
Myocardial
infarction
Kidney
failure
Renal failure
Vision loss
Hypertensive
retinopathy
Blood vessel
Damage
Atherosclerosis

21. Days with Adequate Physical Activity in the Last Month15 22 25
Jill Jones
54 years old
50-60 year-old females
in Washington Heights
50-60 year-old females
nationwide

22. Physical Activity Jill Jones 54 years old 50-60 year-old females
in Washington Heights
50-60 year-old females
nationwide
Pictorial bar graph
Image from

23. Physical Activity

27. Community-based Organizations
Focus groups
Elicitation of information needs and desired formats

28. Informatics Approaches
Simple topic modeling
Community web site as mechanism of return of survey data to respondents
Electronic Tailored Infographics for Community Engagement, Education, and Empowerment (EnTICE3)

31. and Sample Infographic
The EnTICE3 Framework
and Sample Infographic

32. EnTICE3 Requirements
Construct individual- and community- level visualizations
adapt to change
reusable, generalizable
“change the color & size”, “replace star icons with banana icons”, “change the age group from to 18-25”, ...
“same bar graph, but using different survey variables”, “generate the bar graph for a different dataset”, “display this chart in another website”, “a different institution wants a similar visualization”

33. EnTICE3 Requirements
Construct individual- and community- level visualizations
adapt to change
iterative approach
prototype → production
reusable, generalizable
modular, generic services
web standards (HTML, HTTP)
web components (encapsulated interactive templates)

34. Governance Infrastructure
Structures and processes that control data
Query and extract
Store new data
Access control
Audit access
Underlies EnTICE3 and other components

35. Conclusions
Significant barriers to research participation exist for populations at high risk for health disparities
Community engagement approaches essential to reach such participants
Ethical imperative to return data to those that contribute it in a way that is comprehensible and actionable for improving health
Important component of a learning health system
Requires continued engagement and iterative refinement