Agenda-Monday, October 24, 2022

 Panel A

Plain Language Informed Consent Forms and Processes to Promote Empowered Decision Making for People Underrepresented in Research

The complexity of informed consent forms and processes makes it hard for potential study participants to make informed decisions about whether or not to participate in clinical research. Numerous studies document that research informed consent forms are written at reading grade levels that far exceed readers’ abilities (Larson 2015, Hadden 2017). Studies also document participant confusion or misunderstanding related to key study information explained in the consent process (Rothwell 2017, Afolabi 2018). Panelists will present different perspectives on improving informed consent forms and processes from four different research institutions, all with a strong commitment to person-centered informed consent decision-making for people underrepresented in research.

The first panelist will begin with a presentation on what makes research informed consent forms and processes (e.g., e-consent) hard to read, understand and act on from the user experience perspective. This presentation will provide a unique focus on the consent process and using tools to support inclusive and informed partnerships.

Our second panelist will present on the development of the Readability, Understandability and Actionability of Key Information (RUAKI) Indicator, a validated and reliable tool researchers can use to create easy to read informed consent summaries potential participants can understand and use to make informed decisions about participating in research (manuscript in development). This presentation will provide a focused look at how to make key information on informed consent forms easier to read.

Our third panelist will present on best practices and tools to support effective, person-centered consent for racial and ethnic minorities. The panelist will raise linguistic and cultural issues to consider when consenting minority participants and share culturally sensitive consent approaches to support empowered and active decision-making. This presentation will provide a focused look at addressing the needs and concerns of underrepresented groups in research.

Our final panelist will present informed consent process improvement and communication innovations. Consent Builder is an electronic tool that streamlines the process of creating multiple consent documents for multi-site studies using a 2-part consent template. I-Consent is a web-based platform to improve informed decision-making, leveraging multimedia and adult learning principles to communicate a concise consent summary. This presentation will provide a focused look at new technologies to support a clear and high-quality consent processes.

Discussion following the panel will be facilitated by the session moderator. Major points of discussion will be informed by attendee questions and experiences, and the different perspectives presented by panelists to improve informed consent forms and processes.

  Panel B

Building a Health Literate Community to Achieve Health Equity: Insights, Lessons Learned, and Next Steps

The importance of organizational health literacy is increasingly clear in the time of COVID-19 and widespread health disparities. It has been elevated by the new Healthy People 2030 health literacy definitions and its foundational principle that “Achieving health and well-being requires eliminating health disparities, achieving health equity, and attaining health literacy.”

Public health practice, health care, and community organizations have shared goals to achieve health literate communities, but practice implementation, and measurement on this topic, are still emerging. Best practice guidance is needed.

This panel will consider insights, lessons learned, and next steps from an Office of Minority Health-funded project building community health literacy to achieve health equity through improving organizational health literacy capacity and networks in Franklin County, OH. The project is a collaboration among public health departments, health care organizations, and diverse community organizations.

Panelists will give insights from real-world implementation experience in establishing a health literate community via an iterative quality improvement approach to organizational health literacy capacity-building, and leveraging and learning from emerging networking/social components to inform future practice.

We will start with an introduction by the Moderator, Dr. Tetine Sentell, Professor of Public Health at the University of Hawai‘i at Mānoa on the importance of community and organizational health literacy and the particular point of view of this project to build this sustainably through social networks and relationships.

The first presenter, Heather Pennington, the Community Health Initiatives Supervisor from Franklin County Public Health, the project lead agency, will provide a project overview from the public health perspective and why it is valuable to achieve organizational health literacy for equitable public health programming and for building health literate communities.

The second presenter, Dr. Mary Ann Abrams, the GME Quality Improvement Medical Director at Nationwide Children’s Hospital, will share details on why this is important from a health care organization perspective, drawing from deep experience in organizational health literacy practice and clinical practice management.

The third presenter will be Ms. Kara Saiki, from the University of Hawai‘i at Mānoa-based project evaluation team, who will consider insights, lessons learned, and next steps from evaluation of this sustainable organizational health literacy implementation in a community context.

We will conclude with a robust discussion on this topic in this case and as applied to other settings with the audience led by the moderator, starting from the importance of considering health literacy from an organizational, and community and social network context to achieve health equity.

 Special Interest Group A

Health Literacy Solutions to Increase COVID-19 Vaccination Uptake using Human-centered Design and Behavioral Science

The COVID-19 pandemic demonstrates that people of color, particularly Hispanic/Latine/a/o/x communities, are disproportionately affected by the disease, in both cases and deaths. In Arizona, Hispanic/Latine/a/o/x populations accounted for 29.9% of COVID-19 deaths based on recent data from Salud America, and 35% of COVID-19 deaths in Pima County. Hispanic individuals lag the most in vaccination among the County’s racial and ethnic groups. Barriers in health access and literacy have played a significant role when receiving and improving health outcomes. Research has shown health literacy interventions contribute to reducing health disparities, which fosters health equity and social justice, especially in COVID-19 vaccination among racial and ethnic minority populations.

This session will share health literacy and communication strategies being implemented with community health centers to improve COVID-19 vaccination rates in the Hispanic/Latine/a/o/x communities within Pima County among people of childbearing age, specifically those who are peri/pre/post-partum. These culturally and linguistically appropriate strategies (CLAS) aim to enhance COVID-19 testing, contact tracing, prevention practices, and vaccine uptake. This share out will include showcasing equitable and inclusive approaches among patients, practitioners, health systems, and community organizations to design system-level communication campaigns that are scalable to other comparable populations and jurisdictions.

Aligned with the Executive Order on Transforming Federal Customer Experience and Service Delivery to Rebuild Trust in Government, Four Healthy People 2030 Objectives, and Pima County’s Network for Equity and Resilience (PCNER), the session will review the applied methodologies in human-centered design and behavioral economics to promote evidence-based health behavior among Hispanic/Latine/a/o/x communities for increased adoption of COVID-19 vaccination and literacy. The session will present prototypes of key deliverables in an ongoing pilot with clinics such as, but not limited to, communication toolkits, policies, practices, and materials to increase COVID-19 vaccine uptake, improve patient-practitioner communication protocols, and create shared clinical decision-making. In addition, there will be continuous development and creation of best practices and standards for the adoption of COVID-19 health information using a culturally appropriate approach so these populations can easily obtain, communicate, process, and understand the health information and services to make more informed health decisions.

The session will introduce preliminary clinical and organizational outcomes, experiences, and behavioral findings from the pilot to highlight opportunities to improve CLAS solutions that will impact vaccine hesitancy and increase health literacy among the Hispanic/Latine/a/o/x community. This will include training for healthcare practitioners on the teach-back method, transformative dialogue techniques to empower patients in their health decisions, journey mapping, and organizational quality improvement recommendations to support health care systems to deliver value-concordant messaging and clinical care to populations disadvantaged by COVID-19.

Monday, October 30 • 2:30pm – 4:00pm EST

This panel showcases current initiatives aimed at getting adult learners connected and engaged with today’s digital health eco-system. Panelists highlight the voices and experiences of adult learners, across a variety of contexts, and discuss new opportunities for partnership with the adult education system that can help to mitigate inequities related to digital access and opportunities for learning/upskilling.

The specific presentations address:

1. The conceptualization of digital problem-solving among priority low-skilled populations
2. Tools and standards for assessing digital health literacy in adult learner populations
3. E-health readiness and the adult learner experience in government assistance programs
4. Navigating issues of data privacy and health misinformation on social media among immigrant women learners.

This session will enable attendees to reflect critically on the digital and data literacy demands of our health care system and identify action steps in their own programs that can ensure the adult learner perspective is included in future digital equity and health equity efforts.

Monday,  October 30 • 4:30pm – 6:00pm EST

Each panelist in this session will focus on a unique socio-ecological level and its relationship to mental health literacy in a university community. The panelists will explore factors such as race, religion, culture, education, and mental health experiences. The presentation aims to generate meaningful discussions and provide insights into the intersectionality of influential factors from an individual’s environment and mental health literacy. Speaker 1 will explore the individual level of the socio-ecological model (SEM), exploring demographic factors as well as how mental health experiences are associated level of mental health literacy. Speaker 2 will focus on the organizational level of the SEM, analyzing how exposure to education in schools may influence mental health literacy. Speaker 3 will cover the interpersonal level, discussing how family openness to discussions about mental health-related issues were perceived during childhood and adulthood, and how those perceptions are correlated with mental health literacy levels. Finally, Speaker 4 will examine community and societal levels of the SEM and how culture, religion, and country of origin interplay with mental health literacy.

 Panel D

The need to invest in health literacy system capacity

Investment in health literacy system capacity ensures an imperative and systemic effort and transformation which can be multiplied and sustained over time and is resilient towards external trends and events, rather than relying on organizational and individual behavioural change alone.

Discussion:

• How can we empower people to design, develop and implement sustainable health literacy policies, services, and systems?
• How can we increase adoption of practices integrating a health literacy lens, where appropriate, into health-related research, to maximize the positive impact of consequent health policies on health outcomes and the health status of their populations of interest?
• How can we motivate health systems to increase development and adoption of health literacy-informed practices, and develop partnerships to conduct the implementation science to assess if the intended effects/outcomes are being achieved?
• What types of research are needed to demonstrate the value of implementing health literacy-based strategies to health system leaders?