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Connecting Providers and Community Based Organizations to Improve SCD Appointment Attendance

Sickle Cell Disease (SCD) affects approximately 100,000 Americans causing acute pain crises, dangerous infections, and other serious health problems that can damage every organ in the body. That makes consistent and regular appointments vital for people living with SCD.

People living with SCD and their families and family caregivers miss critical healthcare appointments for a variety of reasons. According to a 2019 national study, a majority of patients reported missing a clinic appointment in the previous 12 months. One key strategy NICHQ has learned from patients, caregivers, and providers in interviews and webinars is that addressing the barriers to appointment attendance works better when providers partner with community-based organizations to communicate with patients.

This webinar – the third in its series – focuses on developing a strong relationship between SCD clinics and the CBOs supporting people living with SCD.  Forging shared provider/CBO strategies provides improved messages and supports to patients and families who may be struggling with barriers that health care systems don’t realize.

Webinar Objectives:

  • Identify three of the common reasons for missed appointments for people living with SCD and their families
  • Learn how providers and SCD CBOs can work together to address appointment challenges for people living with SCD
  • Identify resources to forge or strengthen relationship between CBO and clinic
  • Learn resources for providers, CBOs, patients and caregivers to improve conversations to resolve appointment barriers.

Audience: 

  • All SCD stakeholders: advocates and community-based organizations, health professionals, and service providers, people living with SCD and their families
  • Webinar content also will be useful to providers and CBOs that support any patient or caregivers who face barriers to healthcare appointment attendance.
Date
Length

1 hour

Moderator

Judith Gooding, Project Director for Disseminating Results: Missed Sickle Cell Disease Clinic Appointments and the Health Belief Model

Speakers

TaLana Hughes, MPH, Executive Director of the Sickle Cell Disease Association of Illinois

Suzette Oyeku, MD, MPH, Professor of Pediatrics at the Albert Einstein College of Medicine

Carolyn Rowley, PhD, Clinical Psychologist, Certified Nutritionist, Executive Director at Cayenne Wellness Center | Sickle Cell Education, Support, and Advocacy

Toolkit: Defining and Assessing Early Childhood System Performance for Quality Improvement

Early childhood systems exist to improve outcomes for children and families, but it can be a challenge to tell the story of why our system-building efforts matter. To help system builders and stakeholders identify ways their system is working well, as well as areas for improvement, the Center for the Study of Social Policy (CSSP) developed the Early Childhood System Performance Assessment Toolkit in partnership with members of its Early Childhood Learning and Innovation Network for Communities (EC-LINC). 

During the past year, in partnership with National Institute for Children’s Health Quality (NICHQ) and Early Childhood Comprehensive Systems Collaborative Improvement and Innovation Network (ECCS CoIIN) Teams, CSSP has updated and expanded the Toolkit to improve its alignment with the ECCS CoIIN logic model. This webinar will provide an overview of the Toolkit, including two new and two revised measures, and ways communities can use measures from the Toolkit to improve their system’s performance.

Webinar Objectives:

  • Participants will be able to articulate how an early childhood system contributes to better outcomes for young children and their families
  • Participants will improve their understanding of the concept of system performance
  • Participants will be able to identify measures from the Early Childhood System Performance Assessment Toolkit that they could use in their own systems
Date
Length

1 hour

Moderator

Loraine Swanson, MPH, Senior Project Director, NICHQ

Speakers

Cailin O’Connor, MS, Senior Associate, Center for the Study of Social Policy (CSSP)

David Willis, MD, FAAP, Senior Fellow, Center for the Study of Social Policy (CSSP)

Conversations to Improve Patient/Provider Relationships and Increase Appointment Attendance

Sickle Cell Disease (SCD) affects approximately 100,000 Americans, predominantly those of African descent. This inherited blood disorder may cause acute pain episodes, infection, and other serious health problems that can damage every organ in the body.

Too often, people living with SCD and their families and caregivers miss critical healthcare appointments for a variety of reasons. According to a 2019 national study, a majority of patients reported missing a clinic appointment in the previous 12 months. In disseminating the study results, NICHQ interviewed patients, caregivers, and providers – and found that systemic and individual bias and racism contributed to poor patient/provider relationships, which in turn undermined solutions to appointment attendance problems. 

While the relationship between patients or caregivers and their providers is not the main problem, improving that partnership is a big part of the solution. In this interactive session, our panelists will model conversations among providers, families, and advocates about reasons for and solutions to missed SCD healthcare appointments. Using webinar interaction tools and polls, webinar participants will examine, dissect, and discuss what works and what doesn’t in these conversations.

Webinar Objectives:

  • Identify three of the common reasons for missed appointments for people living with SCD and their families
  • Learn three conversation strategies to improve appointment attendance
  • Identify one immediate and one longer-term action to improve healthcare relationships

Audience: 

  • SCD stakeholders: advocates and community-based organizations, health professionals, and service providers, people living with SCD and their families
  • Any caregiver, provider, or advocate in children’s healthcare who experiences frustration with missed appointments
  • Others who want to improve their conversations, their patient/provider relationships, and their appointment attendance
Date
Length

1 hour

Moderator

Judith Gooding, NICHQ Senior Advisor and Project Director for Disseminating Results: Missed Sickle Cell Disease Clinic Appointments and the Health Belief Model

Speakers

Suzette Oyeku, MD, MPH, Professor of Pediatrics at the Albert Einstein College of Medicine

TaLana Hughes, MPH, Executive Director of the Sickle Cell Disease Association of Illinois

Carolyn Rowley, PhD, Clinical Psychologist, Certified Nutritionist, Executive Director at Cayenne Wellness Center | Sickle Cell Education, Support, and Advocacy

James McElligott, M.D., MSCR, Executive Medical Director for Telehealth at the Medical University of South Carolina (MUSC), Associate Professor in the Division of General Pediatrics at MUSC Children’s Hospital

Managing aHUS: A Multidisciplinary Team Approach to Thrombotic Microangiopathy

Thrombotic microangiopathies are rare, life-threatening diseases whose treatment involves multiple physicians from different specialties. Atypical hemolytic uremic syndrome (aHUS) is a form of thrombotic microangiopathy characterized by the formation of blood clots in the body’s small blood vessels, with symptoms often first appearing in childhood. Severe forms of aHUS can lead to chronic kidney disease and kidney failure. Because symptoms are often non-specific (including paleness, nausea, vomiting, fatigue, drowsiness, high blood pressure, and swelling), diagnosis of aHUS can be complex and can impact the success of pediatric kidney transplants.  

Hosted following National Pediatric Transplant Awareness Week, NICHQ invites pediatricians and specialists to continue the conversation by widening their understanding of the clinical presentation of aHUS, learn more about the presentation and treatment, and discover how a team approach can successfully manage aHUS. 

Webinar Objectives:  

  • Understand the clinical presentation of aHUS 

  • Understand the pathophysiology of aHUS and the genetic background of the disease 

  • Multidisciplinary Team approach to the management of aHUS 

Date
Length

1 Hour

Speakers

Jean M. Francis, MD, Associate Professor of Medicine at Boston University School of Medicine

Learning from the Landscape: Strategies in Early Childhood Health Equity

During the last decade, there has been an increasing understanding of how the social determinants of health (e.g., systemic and environmental challenges such as poverty, poor housing, and poor health care) affect the health and well-being of young children and their families. The multi-faceted nature of these challenges has led many communities and states to build – or expand – initiatives composed of representatives from multiple sectors, disciplines, and systems to join to address disparities in early experiences and outcomes for young children.

As interest in health disparities (and community-wide solutions to address them) grows, there is a need to better understand what challenges these initiatives face and what strategies communities have used to address those challenges.

The Early Childhood Health Equity (ECHE) Landscape Project set out to understand and highlight promising strategies to address key issues such as sustainability, data use, state and local relationships, cross-sector partnerships, and operationalizing health equity within the context of early childhood health equity initiatives.

Webinar Objectives:

  • Identify other early childhood health equity initiatives for potential networking
  • Describe key strategies that early childhood health equity initiatives have found to be impactful

Speakers will include:

  • Researchers from the teams at NICHQ and Child Trends who conducted the project
  • Representatives from early childhood health equity initiatives who will share their perspectives on success, challenges, and needs for the future
Date
Length

1 Hour

Pediatric Telehealth Strategies During and Post (?) the COVID-19 Pandemic

This is the second webinar in a series on supporting health during and after the COVID-19 pandemic.

Across the country, health and social service providers have had to find new ways to support children and families in the face of COVID-19. Home visiting services, pediatric well-child visits, prenatal care, and mental health appointments have largely had to transition from in-person appointments to visits virtually—either via phone or video. At the same time, the pandemic has worsened and added to stressors that make these services even more necessary, namely increased effect of institutional bias combined with COVID-19’s impact on those living with chronic conditions.

In the second webinar of our COVID-19 series, health and social service providers will learn how to best connect with children and their caregivers during a virtual visit to help ensure families receive the health care they need during and after this pandemic, along with developing best practices for strengthening their relationship with patients using telehealth.

Webinar Objectives:

  • Describe the trends in telehealth use for pediatrics during the pandemic
  • Articulate how patient-centered care can be enhanced with the use of telehealth
  • Explore innovative models of telehealth care
Date
Length

1 Hour

Speakers

James McElligott, M.D., MSCR, Medical Director for Telehealth at the Medical University of South Carolina (MUSC), Associate Professor in the Division of General Pediatrics at MUSC Children’s Hospital

Reneé Canady, PhD, MPA, CEO of the Michigan Public Health Institute (MPHI)

Scott D. Berns, MD MPH, NICHQ’s CEO and Project Lead for the COVID-19 Enhancement Project

Judith Gooding, NICHQ Senior Advisor and Project Director for the COVID-19 Enhancement Project

LENS Care: Leading Equity Now in Systems of Care

This is the first webinar in a series on supporting health during and after the COVID-19 pandemic.

Minority populations disproportionately experience poorer outcomes related to key national health indicators. These persistent disparities respond to inequities in care and access, social and economic factors, and the enduring effects of structural racism, prejudice, and discrimination. The COVID-19 pandemic has starkly illustrated these inequities, which makes pursuing equity more important now than ever.

In the first webinar of our COVID-19 series, we’re taking an in-depth look at how bias limits quality care for those who need it most during this national crisis and sharing resources and ideas focused on achieving health equity and combatting the health disparities rooted in the structures of our systems.

Webinar Objectives:

  • Recognize the dual role COVID-19 plays for Black and Brown children with special healthcare needs by illuminating pre-existing inequities while also further exacerbating the inequities
  • Recognize and identify bias within your system and yourself
  • Learn ideas, tools, and resources to effect change on the individual and system level
Date
Length

1 Hour

Speakers

Reneé Canady, PhD, MPA, CEO of the Michigan Public Health Institute (MPHI)

James McElligott, M.D., MSCR, Medical Director for Telehealth at the Medical University of South Carolina (MUSC), Assistant Professor in the Division of General Pediatrics at MUSC Children’s Hospital

Scott D. Berns, MD MPH, NICHQ’s CEO and Project Lead for the COVID-19 Enhancement Project

Judith Gooding, NICHQ Senior Advisor and Project Director for the COVID-19 Enhancement Project

Reducing Preterm Birth: States Share Interventions, Policy Efforts, & Emerging Issues

While preterm birth rates did decline nationwide and in many states between 2006 and 2014, rates in the U.S. increased throughout the span of the project. Additionally, significant disparities persisted in the preterm birth rate, with the gaps steadily widening. These disparities and widening gaps account for the increase in the overall U.S. preterm birth rate despite success in many states — and point to the critical need to address these disparities to have a meaningful impact on national rates.

Data collected as part of NICHQ’s leadership of IM CoIIN, a national initiative to improve birth outcomes and decrease infant mortality rates, coupled with contextual knowledge facilitated by strong relationships between NICHQ and state IM CoIIN teams, has enabled us to explore and document systems and infrastructures that promoted or hindered improvements in four states: Kansas, Massachusetts, Mississippi, and Oklahoma.

Webinar Objectives:

  • Share key insights from case studies, including targeted interventions and policy efforts
  • Share key insights about emerging issues identified in specific states that may apply more widely
Date
Length

1 Hour

Speakers

Rachel Sisson, MS, Bureau Director at Kansas Department of Health and Environment, Kansas

Dr. Charlene Collier, Physician, Researcher at University of Mississippi Medical Center, Mississippi

Audra Meadows, MD, MPH, FACOG, Perinatal Neonatal Quality Improvement Network of MA (PNQIN), Massachusetts

Becky Russell, MSPH, NICHQ Senior Director, Applied Research and Evaluation

Increasing Appointment Attendance: A Vital Opportunity to Improve Health Outcomes for Those Living with Sickle Cell Disease

Sickle cell disease (SCD) affects approximately 100,000 Americans, predominantly those of African descent. The inherited blood disorder may cause acute pain episodes, infection and other serious health problems that can affect every organ in the body.

To optimize health outcomes, national guidelines recommend routine follow-up appointments every six months, and more frequently for patients on specific therapies or experiencing complications. Yet, a 2019 national study showed that a majority of patients, both children and adults, reported missing a clinic appointment. This means that a majority of patients with SCD may miss out on therapies that have the potential to improve their health and quality of life.

To better understand what's behind the high rate of missed appointments, NICHQ conducted a series of interviews with patients and providers. Now, we're inviting all SCD stakeholders—health professionals, service providers, patients, and families—to view this webinar where we'll share our findings and facilitate a discussion on change strategies. 

Webinar objectives:

  • Share key takeaways from the national study on appointment attendance among patients with SCD
  • Share findings from the stakeholder interviews, including common reasons behind missed appointments and suggestions for increasing appointment attendance
  • Facilitate an interactive discussion on systems-, hospital- and individual-level opportunities to increase appointment attendance
Date
Length

1 Hour

Speakers

Suzette Oyeku, MD, MPH, Professor of Pediatrics at the Albert Einstein College of Medicine

TaLana Hughes, MPH, Executive Director of the Sickle Cell Disease Association of Illinois

Judith Gooding, NICHQ Senior Advisor and Project Director for Disseminating Results: Missed Sickle Cell Disease Clinic Appointments and the Health Belief Model

Social Determinants of Grief: the Impact of Black Infant Loss

This webinar was hosted by NICHQ on behalf of Baby 1st Network

Understanding African American grief requires taking a long look at the historical and contemporary experiences around the issues of death. But troublingly, there is very little research conducted on Black grief and its connection to racism and the social injustices connected to it. Understanding the impact of systemic racism and its influence on how a person reacts to loss sets the stage for addressing how best to support communities that are disproportionately affected by infant death.

This webinar will offer insight on how some women of color deal with compounded loss and trauma. Participants will walk away with an opportunity to gain additional knowledge on how to best serve communities of color affected by infant loss. 

Date
Length

1 hour

Speakers

Stacy D. Scott, PhD, MPA, Executive Director of Baby 1st Network and NICHQ Senior Project Director