Agenda

Visit Auditorium A or Auditorium B in the Conference Lobby to attend each of the presentations.

Tuesday – March 29, 2022

11:00 - 11:45 AM EDT     Pre-Symposium Program 1

Negeen Aghassibake

Putting People First: Creating More Inclusive Visualizations

Data visualization is an effective tool that can be used to learn from and share data. However, visualization design “best practices” often do not prioritize inclusion and issues around representation, which can unintentionally harm those who show up in and are impacted by data. This session will suggest more inclusive data practices, including putting people first in our decision making and visualization approaches. Prior knowledge of data visualization will not be assumed.

12:00 - 1:00 PM EDT KEYNOTE 1

C. Daniel Mullins & DeJuan Patterson

Trust in Science and the Impact of COVID-19

This tag-team keynote presentation by DeJuan Patterson and C. Daniel Mullins will discuss the general idea of community-academic partnerships and the broader ecosystem of community-engaged research (CEnR). DeJuan will describe his role as a Credible Messenger and community leader and his experiences – both positive and negative – working with research institutions. Daniel will discuss how he has built a patient-centered CEnR infrastructure called the PATIENTS Program at The University of Maryland Baltimore (UMB) and his experiences as the Community & Collaboration Core lead within UMB’s Institute for Clinical and Translational Research. While the presentation will include historical content, a significant portion will focus on CEnR changed during the COVID-19 pandemic.

The presentation will address the symposium’s third objective to evaluate practices from researchers and organizations to gain trust in medical research among under-resourced and/or underrepresented populations in biomedical research. Examples of evidence-based engagement methods that emerged from mixed methods research, including an environmental scan, interviews, and focus groups will be presented. The PATIENTS Program’s 10-Step Framework and the Patient Engagement Translation Table will be highlighted. Specific topics include:

  • Evidence-based approaches to building and maintain trust
  • Community trust, distrust, and mistrust before, during, and after COVID-19
  • The role of social media in the information age
  • The impact of misinformation and disinformation on trust in science
  • The significance of a Credible Messenger for messaging and information sharing
  • The importance of dissemination for advancing health equity
  • Case study of collaborative CEnR with the FDA on COVID-19 testing
  • Case study of the PATIENTS Professors Academy
Auditorium A Auditorium B
1:15 - 2:15 PM EDT
Presentation 1A

Aisha Langford, Dorice Vieira and Carolyn Aird

Enhancing Trust and Inclusion in Medical Research among Diverse Populations: Reflections from a researcher, librarian, and health educator

Panel Speakers: Langford, A., Vieria, D. and Aird, C.

For decades, certain populations have been underrepresented in biomedical research (e.g., older adults and people who self-identify as Black and/or Hispanic). The reasons for this underrepresentation in biomedical research are complex, but include lack of knowledge about research, disparities in access to high-quality, reliable, and relevant health information; limited access to high-quality clinical care, and lack of explicit invitations to participate in clinical trials. Another important fact that affects representation in biomedical research is trust in health professionals and science (or the lack thereof), particularly among minoritized groups. This panel brings together professionals with deep expertise in public health, library science, and community engagement. In our presentation, we will highlight various approaches to building and maintaining trust among diverse communities. We will also debunk common myths related to achieving diversity, equity, and inclusion in medical research. First, we will present a general conceptual model for clinical trial participation that can be applied to various disease and behavioral contexts. Second, we will introduce the ASK (Assume, Seek, Know) approach for enhancing participation in biomedical research: (1) assume that all patients will want to know their options, (2) seek the counsel of stakeholders, and (3) know your numbers. Third, we will provide real-world examples of successful community and stakeholder engagement. Finally and most importantly, a medical librarian and community health educator will share lessons learned from advising and collaborating on biomedical research projects conducted with racially/ethnically- and age diverse populations.

Learning Objectives

After this presentation, participants will be able to:

1. Define the difference between trust, mistrust, and distrust
2. Explain 1 strategy for working collaboratively with your target population
3. Describe the benefits of having librarians and health educators on research teams
4. Communicate 1 approach for improving health literacy and access to health information

1:15 - 2:15 PM EDT
Presentation 1B

Lisa Federer

Beyond the Paper: Sharing and Impact of Digital Research Objects

When thinking about how they share the outcomes of their research, most researchers would likely point to scholarly papers as the primary output. However, increasingly it is becoming a standard practice to share other digital research objects, such as data and code, to increase research transparency and reproducibility as well as enable reuse. With the NIH’s new Data Management and Sharing Policy going into effect in less than a year, even researchers who have never considered sharing their data will soon be required to do so, likely leading to an even greater wealth of data and digital research objects available for reuse. This talk will discuss the biomedical research data ecosystem, implications of the NIH’s Data Management and Sharing Policy, and efforts to understand the impact of and incentivize sharing of digital research objects.

2:30 - 3:30 PM EDT
Presentation 2A

Kim Pham & Jack Maness

Transcribing, Publishing, and Protecting Archival Medical Records as Data: A Case Study Involving Records from the Jewish Consumptives’ Relief Society

A recent project at the University of Denver (DU) Libraries used handwritten text recognition (HTR) software to create transcriptions and a computationally-analyzable dataset of medical records from a tuberculosis sanatorium located in Denver, Colorado from 1904 to 1954. While of value to research and teaching, just because we can doesn’t always mean we should: the realities of publishing large datasets online that contain medical and personal histories of potentially vulnerable people and communities introduce serious ethical considerations. This presentation shares the approach DU took in this project, and both underscores the value of HTR in providing data to research and frames ethical considerations related to protecting data derived from it, all in the context of other related projects

2:30 - 3:30 PM EDT
Presentation 2B

Gregory Marcus

Digital Phenotyping and Personal Sensing in Cardiology and Beyond

Fancy new gadgets, wearables, mobile apps, and the internet in general all represent novel tools that might facilitate traditional clinical research, provide insights to “real-life” and “real-time” phenomena within individuals’ natural environments, and might themselves be worthy of study. However, rather than focusing on the glitz a shiny new technology might theoretically inspire, the most meaningful conclusions that can be readily extrapolated to our daily lives require sound and scientifically rigorously research questions pursued utilizing conventional research designs and statistical analyses. Our group has combined these new technologies with these traditional approaches to yield results that have become pertinent to the lay public, patients seeking care, and clinicians, including understanding how a smartwatch might detect a common arrhythmia, how screentime affects sleep, how a smartphone’s geolocation might help facilitate clinical research, how the pandemic affected overall health such as weight gain, how alcohol can immediately affect the heart, and how coffee or caffeine might (or might not) have adverse cardiovascular effects. Much of this work highlights a new Digital Research Platform called Eureka, an NIH-supported resource built for any interested investigator with the goals of leveraging existing technology to facilitate mobile-health based research of any discipline.

3:45 - 5:00 PM EDT KEYNOTE 2

Edgar Gil Rico, Ashley Green

All of Us: Participants and Researchers Building a Healthier Future

The All of Us Research Program is inviting one million people across the U.S. to help build one of the most diverse health databases in history. The program’s large, diverse, and broadly accessible data resource can help answer many questions to help create a healthier future for all of us.

Learn about the program, the participants, and the tools available to researchers to conduct studies to help improve our understanding of human health.

& NNLM Closing Announcements

Martha Meacham




Wednesday, March 30, 2022

10:30 - 11:30 AM EDT     Pre-Symposium Program 2

Sally Gore

Seeing the Forest AND the Trees: Librarian Services and Support Throughout the Entire Research Lifecycle

From the beginning step of defining and honing a research question all the way through to the process of tracking and measuring the outcomes of a research project, touch points exist where the skills and expertise of library and information science professionals can enhance and support the research process. Too often, however, all the stakeholders involved (research librarians included) are unaware of where and how these valuable connections can be cultivated and embraced. Despite strong efforts towards a team science and/or more collaborative research environment, much work remains to be done for all involved to see and understand not only their individual contributions to the process, but where and how they can engage others to foster better, more efficient, and more impactful research. This presentation will highlight and address the many opportunities that research librarians and others providing library services can bring to the research process throughout its entire lifecycle, and in turn help raise awareness of where and how we can join forces to continually improve biomedical and scientific research.

12:00 - 1:00 PM EDT KEYNOTE 3

Dave deBronkart

It Gets Real: A Patient Advocate Faces A Nasty Diagnosis

During a 2019 NNLM presentation, famous advocate e-Patient Dave spelled out how medical research and innovation are changing before our eyes, when medicine is out of options. "Superpatients" are extending science on their own, and if librarians listen to this paradigm-changing shift, we can play an essential role by guiding them to the information they need. In 2021, it got urgent for Dave when he was unexpectedly diagnosed with glaucoma and lost 30% of his vision in one eye. Aided by FitEyes, a community of expert glaucoma patients, e-Patient Dave was motivated to learn an enormous range of information, both from the literature and from people's practical experience. How can librarians help patients find vital information to help healthcare achieve its potential?

For maximum impact, view the recording of Dave's 2019 talk.

Auditorium A Auditorium B
1:15 - 2:15 PM EDT
Presentation 3A

The Journey to “Health for All”

Join Dr. Melissa Simon, MD, MPH, Director of Northwestern’s Center for Health Equity Transformation and the Health for All team for a lecture and panel discussion to learn more about their partnership with Chicago Public Library to help Chicagoans learn more about clinical trials. Health for All started as a paper-based tool and is now a robust online tool, making it more accessible.The Health for All tool helps support informed decisions about joining a clinical trial and can also help people find clinical trials that they might want to join. Working with members of the community and with project partners, Health for All has three goals: help people across Chicago learn about clinical trials; help libraries support people who want to learn about clinical trials; and do research to improve how libraries can help people learn about clinical trials. Health for All was developed in partnership with the following institutions and organizations:

  • Northwestern University Feinberg School of Medicine
  • Galter Health Sciences Library and Learning Center
  • Chicago Public Library
  • Chicago Department of Public Health
  • University of Illinois Chicago
  • University of Chicago

OBJECTIVES:

  • Introduce the Center for Health Equity Transformation and the innovative Health for All partnership, and share team perspectives
  • Share the development and implementation of the Health for All project.
  • Describe lessons learned and new efforts that have emerged from this collaboration
Melissa A. Simon, MD, MPH, Nihmotallahi Adebayo, MS, Rabih Dahdouh, Will Dunne, Araceli Estrada, Ivy Leung, Magdalena Nava, Q. Eileen Wafford, MSt, MLIS, & Angela Ingram
1:15 - 2:15 PM EDT
Presentation 3B

Caroline Nickerson

Turn Community Curiosity into Real Scientific Impact with SciStarter & NLM

So many people love nature and learning about the world around them: they’re curious, concerned and they want to make a difference. The good news: all of these people of all ages can do real science, at any time, by becoming citizen scientists! Citizen scientists volunteer to collect or analyze data, moving science forward and helping researchers understand how things work — with all types of science, from astronomy to health to zoology.

Join this session to learn more about this exciting field, as well as related programs, applications, and how YOU can get started!

2:30 - 3:30 PM EDT
Presentation 4A
Jen Brown, Candace Henley, Melvin Thompson

Ensuring Research Benefits Communities: The Role of Community Engagement

"Nothing about us, without us!" Community-engaged research is an approach that says research should be driven by those whose lives are most affected by the research. There is increasing recognition that community engagement is key for ensuring that clinical and translational research is more likely to lead to real practice, policy, and community changes in health and health equity. Since 2008, the Alliance for Research in Chicagoland Communities (ARCC) at Northwestern University has worked to catalyze & support research partnerships that honor and share power with communities. In this session, ARCC Community Steering Committee members and staff will share the basic principles and strategies of engaged approaches to research and considerations and resources for researchers and academic stakeholders when preparing for, supporting, and sustaining meaningful community engagement and partnerships. Collaboration examples with public community libraries and health science libraries will be highlighted. Presenters will also discuss the crucial role of community engagement in addressing issues of diversity, equity, inclusion, and trustworthiness in research.

2:30 - 3:30 PM EDT
Presentation 4B

Terri Powell

Libraries: Public Health Partners for Health Promotion

With nearly 17,000 library branches nationwide, public libraries serve 95% of the United States population. They have extensive population reach and the ability to serve as a partner in health promotion for communities. The goal of this presentation is to discuss strategies for librarians to partner with researchers and health professionals to support the well-being of youth and families. We will describe existing library-university partnerships and propose additional partnerships that could support communities.

Stacey Stephens

Relationship Building and Trustworthiness: A 10- Year Community-Based Approach to improving Birth Outcomes in West Baltimore

Presenter: Stacey B. Stephens MSW, LCSW-C, Director of B’more for Healthy Babies and Early Learning Programming@Promise Heights

B’more for Healthy Babies Upton/Druid Heights@ Promise Heights (BHB U/DH), is a place-based program at the University of Maryland School of Social Work and Medicine, in a historically under-resourced community in West Baltimore working to prevent infant mortality, and improve maternal and child health outcomes. The program is a part of Baltimore’s B’more for Healthy Babies Initiative that collaborates with stakeholders to ensure that every baby born in Baltimore is born healthy and of a good weight and able to live in a thriving family. BHB U/DH employs African American Community Health Workers (CHWs) as community outreach and engagement specialists who develop and facilitate culturally congruent perinatal and parenting educational groups to promote maternal and family health/well-being. Building relationships and gaining the trust of expectant and parenting families, caregivers and community partners has proven to be an important component of their work as public health messengers. Feedback received from these trusted relationships has informed programming, direct service provision and the program’s annual workplan. Over the past decade, the program has worked collaboratively with expectant women, parents of children ages 0-3 and community partners to significantly decrease infant death-specifically those related to unsafe sleep practices. To date, sleep related deaths per 1,000 births decreased by 47.5% compared to the 10 years prior to the start of the intervention and the 5-year average infant mortality rate decreased by 74.6% since the beginning of the intervention. The program has also accomplished increases in breastfeeding rates on par with the Baltimore City’s rates. Community outreach and educational campaigns on safe sleep practices, breastfeeding, smoking cessation and birth spacing have contributed to this success, while simultaneously building skills of health literacy in community members. The program integrates stress management techniques into group-based activities, engages fathers, and supports parents in fostering literacy, numeracy, and socioemotional development of infants and toddlers. Additionally, the program provides microgrants to residents and financial supports for the training of community-based doulas and lactation consultants. The pandemic and the call to “socially distance” exacerbated issues of social isolation, stress and distress, and grief and loss experienced by community members. This presented a unique opportunity for the program to address the issues of poverty, food apartheid, and community violence, among an interconnected web of structural factors. Building upon the CHW’s established relationships with community members and partners and centering the identified needs of families, the program responded by creating and expanding BHB’s existing programming to support families beyond CoVID.

3:45 - 5:00 PM EDT KEYNOTE 4

Jonathan Eldredge

A Whole New World: Relating to Research

Researchers and librarians interact on an episodic basis to further the goals of research. While they share much in common, researchers and librarians essentially live in different worlds. They have separate incentives, priorities, and daily concerns. As both a researcher and an information professional I have worked in both worlds for decades. In this keynote session I intend to bridge these two worlds with the goal of greater research productivity.

NNLM Closing Announcements

Martha Meacham

Presentation titles and abstracts are forthcoming

Tuesday – March 29, 2022

11:00 - 11:45 AM EDT     Pre-Symposium Optional

Negeen Aghassibake

12:00 - 1:00 PM EDT KEYNOTE 1

C. Daniel Mullins & DeJuan Patterson

Auditorium A
1:15 - 2:15 PM EDT
Presentation 1A
Aisha Langford, Dorice Vieria & Carolyn Aird
2:30 - 3:30 PM EDT
Presentation 2A
Kim Pham & Jack Maness
Auditorium B
1:15 - 2:15 PM EDT
Presentation 1B
Lisa Federer
2:30 - 3:30 PM EDT
Presentation 2B
Gregory Marcus

3:45 - 5:00 PM EDT KEYNOTE 2

Edgar Gil Rico, Ashley Green

& NNLM Closing Announcements

Martha Meacham




Wednesday, March 30, 2022

10:30 - 11:30 AM EDT     Pre-Symposium Program 2

Sally Gore

12:00 - 1:00 PM EDT KEYNOTE 3

Dave deBronkart

Auditorium A
1:15 - 2:15 PM EDT
Presentation 3A
The Journey to “Health for All”
Melissa A. Simon, MD, MPH, Nihmotallahi Adebayo, MS, Rabih Dahdouh, Will Dunne, Araceli Estrada, Ivy Leung, Magdalena Nava, & Q. Eileen Wafford, MSt, MLIS
2:30 - 3:30 PM EDT
Presentation 4A
Jen Brown, Candace Henley, Melvin Thompson
Auditorium B
1:15 - 2:15 PM EDT
Presentation 3B
Caroline Nickerson
2:30 - 3:30 PM EDT
Presentation 4B
Terri Powell & Stacey Stephens

3:45 - 5:00 PM EDT KEYNOTE 4

Jon Eldredge

NNLM Closing Announcements

Martha Meacham


All attendees should adhere to the NNLM Code of Conduct.