Category: PODCAST

Rachelle Zribi is a Health Outcomes Researcher at YALE/YNHH Center for Outcomes Research and Evaluation (CORE). She leads measure development and implementation teams, many of which engage closely with patients and families. Previously, Rachelle worked as a Research Intern at the David H. Murdock Research Institute (DHMRI) in the Nuclear Magnetic Resonance Laboratory and the UMass Memorial Medical Center in the Department of Obstetrics and Gynecology.

Rachel Johnson-DeRycke is a Senior Health Outcomes Researcher for the Quality Measurement group at YALE CORE. In her role, she directs patient and family engagement initiatives. Prior to this work, Rachel held a position as a Public Health Specialist-Risk Analyst for the U.S. Department of Agriculture Food Safety and Inspection Service, where she innovated developing microbial risk assessments to inform food safety policy development. She received her MPH in Environmental and Occupational Health from Drexel University.

Here’s a glimpse of what you’ll learn:

· YALE CORE’s journey with patient and family engagement

· The role of measurement and the importance of measure development

· What YALE CORE has learned from patient partners about engagement

· Thoughts on the future of patient-centered measurement in healthcare

In this episode…

It is critical for health systems to set measures in place to meet patients’ needs. Quality measurement allows all consumers to be informed about where they receive care. This transforms how hospitals address issues at their facility, the rankings they score, payment incentive programs, and more.

Rachelle Zribi and Rachel Johnson-DeRycke share how YALE CORE has embarked on a journey to reach true partnership and co-creation with patients, families, and patient advocates.

In doing so, patient partners have shared critical feedback on new measure decisions. Their input and stories help bring real-world experiences to the complex problems that the research teams focus on and the challenges patients face.

In this episode of the Patient Partner Innovation Community podcast, Desiree Bradley is joined by Rachelle Zribi and Rachel Johnson-DeRycke, Health and Senior Health Outcomes Researchers at YALE CORE, to discuss their measure development processes and patient and family engagement practices.

Resources Mentioned in this Episode: YALE CORE

Ignatius Bau is an independent Health Equity Consultant based in San Francisco, California, who currently works with non-profit organizations, foundations, and government departments to improve care delivery and patient safety. In his role, he provides analysis of public policies, facilitates meetings, plans events, and conferences, and supports the development and implementation of organizational and programmatic strategies.

Ignatius has led many career paths in his experience. He began as a Civil Rights and Immigration Law Attorney after obtaining his JD from the University of California, Berkeley. Later, he worked as the Program Officer and Program Director at the California Endowment and directed health policy and programs at the Asian and Pacific Islander American Health Forum. Ignatius has also served on a host of expert advisory panels and councils on HIV/AIDS among minorities, Asian American and Pacific Islander health and wellness, immigrants, and refugee rights, and LGBTQIA+ issues, to name a few.

Here’s a glimpse of what you’ll learn:

• What is the Asian American and Pacific Islander Presidential Memorandum

• How the Presidential Memorandum is being implemented by the Biden-Harris administration

• How community organizations have mobilized to address Anti-Asian Hate

• The disproportionate impact that COVID-19 has had on Native Hawaiians and Pacific Islanders

• A glimpse into ATW’s project with the Office of Minority Health in response to the Presidential Memorandum

• Advice to community members and health care professionals on how to get involved

In this episode…

Asian Americans, Native Hawaiians, and Pacific Islanders (AANHPI) are often ignored or labeled as model minorities. The concept of the model minority is a myth that dangerously perpetuates the idea that AANHPIs are more well-off than everyone else and assumes that there is no reason why the Federal, state, and local governments nor healthcare systems should pay attention to their needs.

Unfortunately, we have seen a surge in hate towards Asian Americans during the COVID-19 pandemic fueled by inflammatory and xenophobic rhetoric. Community-based organizations have mobilized to collect information about these incidents, as many are not on official law enforcement records, finding that they were largely accompanied by COVID-19 related statements and targeted various Asian ethnicities. The pandemic also highlighted the lack of data on AANHPI communities, an issue that precedes COVID-19.

In this episode of the Patient Partner Innovation Community podcast, Desiree Bradley is joined by Ignatius Bau, Health Equity Consultant in San Fransisco, California, to discuss the Presidential Memorandum, ATW’s current work with the Office of Minority Health, and how to get involved.

Resources Mentioned in this Episode:

Executive Order On Advancing Racial Equity and Support for Underserved Communities Through the Federal Government

Memorandum Condemning and Combating Racism, Xenophobia, and Intolerance Against Asian Americans and Pacific Islanders in the United States

Karen Fernandes has been a nurse for over forty years and is Principal and President of AYR Consulting Group, where she supports hospitals across the United States in their quest for quality, patient safety, and compliance with Joint Commission Standards and Medicare Regulations. In her nursing experience, Karen has held many positions from Medical/Surgical, Emergency, OB, Nursing Supervisor, Chief Nursing Officer, and Director of Quality Management. 

As a volunteer, Karen has been an advocate for the Diethylstilbestrol (DES) exposed for over 30 years. Karen served as President and board member of DES Action/USA, a non-profit organization whose goal is education, advocacy, and support of the millions of Americans exposed to DES. To expand the knowledge base, Karen has participated in National Institute of Health (NIH) research studies on DES and authored a DES Exposure Nursing Curriculum available in the United States, Canada, and Europe. Currently, Karen is the lead administrator for DES Info, a group that shares ongoing information for those affected. Karen is also a member of the Centers for Medicare and Medicaid Services (CMS) Person and Family Engagement Network (PFEN).

Here’s a glimpse of what you’ll learn:

Here’s a glimpse of what you’ll learn:

·        The historical context and risks of Diethylstilbestrol (DES) exposure

·        Karen Fernandes’s lived experience with DES exposure

·        How to be proactive if you are DES exposed or have a family history linked to DES

·        Advice to providers for addressing DES exposure in partnership with patients

·        Karen Fernandes’s advocacy work for those affected by DES

In this episode…

The story of Diethylstilbestrol (DES) began in 1938 when British physician and chemist Charles Dodds and his team of scientists made the first synthetic oral form of estrogen. While DES was used widely to prevent miscarriage and related complications in pregnant women, 1970s research has since linked DES exposure to a host of health conditions that affect generations.

Still, many are uninformed about DES, including health providers. Karen, who shares her insights as a DES daughter, nurse, and advocate, advises the DES-exposed or those concerned about DES exposure to ask providers questions and actively seek information related to DES. At the same time, providers must engage in an ongoing dialogue with patients to become familiarized with their lived experiences and address DES exposure.

In this episode of the Patient Partner Innovation Community podcast, Desiree Bradley is joined by Karen Fernandes, president of AYR Consulting Group in Dallas, Texas, to discuss the prevalence and risks of DES exposure.

Resources Mentioned in this Episode:

DES Info

NIH website

AYR Consulting Group

National Quality Forum

The Joint Commission

Ajshay James, MBA, is a Mediator, Motivator, Author, Advocate and Mother. She is originally from Washington, DC and is a champion for change—change in the way the world views philanthropy and approaches advocacy for vulnerable populations. Her years of experience of executive leadership in the philanthropic and financial sectors make her a powerhouse–that coupled with a heart the size of Texas is a recipe for a world of good. She has served on numerous committees, boards of directors, founded not-for-profits, launched initiatives and advised general corporations on goodwill strategy.

Her most proud role is that of a mother to her former micro-preemie toddler daughter and unicorn lover, Harper. Ajshay’s NICU and premature birthing experience has made her a strong advocate for preemie and patient rights as CEO and Founder of the Harp Foundation. Committed to health equity, Ajshay is a sought-after speaker and practices servant leadership. Currently, Ajshay is pursuing the development of a patient, caregiver, and inter-agency focused software that will offer risk management and response support to responding care partners in the healthcare field. 

Here’s a glimpse of what you’ll learn:

Here’s a glimpse of what you’ll learn:

• Ajshay James’ experience in the Neonatal Intensive Care Unit (NICU)
• Resources that the Harp Foundation offers to parents in the NICU experience
• Ajshay’s advocacy work in partnership with Yale CORE on maternal health disparities
• The key role of community partners as drivers for measures development

Resources Mentioned in this Episode:

Harp Foundation

March of Dimes

Yale CORE

Michelle Whitman and MaryLiz McNamara believe that disability is an asset. They are on a mission to build sustainably inclusive practices and experiences for all.

Michelle has over 20 years of experience working with individuals with disabilities in educational and corporate settings. Michelle’s passion for helping individuals see their weaknesses as a strength has paved the way for her success. She is the co-founder of Asset Based Consulting, Inc.

MaryLiz has decades of experience working on disability inclusion in education and employment. She has worked in cognitive rehabilitation for people with brain injuries, academic coaching, in career counseling for the Division of Vocational Rehabilitation, and has led an accessibility office for a major university. She designed and led an award-winning program for neurodiverse university students which resulted in significant increases in degree completion and successful employment. She is the co-founder of Asset Based Consulting, Inc.

In this episode….

We discuss the topic of inclusion and access for people living with disabilities with experts Michelle Whitman and MaryLiz McNamara. Did you know that there are approximately 1 in 4 people live with a disability and more than 50% of people in the U.S. either identify as a person with a disability or are closely connected to someone who does? Michelle and MaryLiz work to disrupt the mindset around disability, resulting in authentically developed, sustainable processes that are accessible and inclusive by design.

Here’s a glimpse of what you will learn:

• Broaden your thinking about disability inclusion and access beyond compliance with regulation.
• Identify your assumptions about people with disabilities and how they cause barriers to inclusion.
• Be planful about disability inclusion from the beginning – be proactive versus reactive.

Contact Michelle or MaryLiz or connect with them through social media:

MaryLiz@AssetBasedConsulting.com

Michelle@AssetBasedConsulting.com

LinkedIn:

https://www.linkedin.com/company/asset-based-consulting/

https://www.linkedin.com/in/michelle-witman/

https://www.linkedin.com/in/mary-liz-mcnamara-090b308/

Facebook or Instagram: Asset Based Consulting

www.AssetBasedConsulting.com

Kevin Wake is currently the chairman for University Health’s Patient & Family Advisory Committee. He is also the President of the Uriel E. Owens Sickle Cell Disease Association of the Midwest in Kansas City, KS. He has a bachelor’s degree in Human Biology from the University of Kansas and worked in pharmaceutical sales and management for 23 years before taking an early retirement due to health complications from his sickle cell disease. He also has a master’s degree in Healthcare Informatics from Walden University and a Community Health Worker certification from the SCDAA.

In this episode….

Kevin Wake shares his journey from patient to patient advocate. You will hear how he began to engage with his local Sickle Cell organization and quickly became a national champion. His story will inspire you into action. He also explains how to provide a welcoming environment where patients and providers can come together collaboratively to drive change in your healthcare ecosystem.

Here’s a glimpse of what you will learn:

• How a patient’s story and lived experience has the power to drive change in the healthcare ecosystem
• The different levels of patient engagement and how a patient can be empowered to partner with their healthcare environment
• The importance and strategies to ensure health systems provide an environment for meaningful patient engagement

Ashley is an African American female who resides in Quinter, KS. She has become a national and local patient advocate and champion. She has been instrumental in her community to assist and elevate marginalized voices. She was inspired to become an advocate in her local school system from her experiences with her two sons who have autism. Through her advocacy she has become a true partner in her community to inform and advocate for persons with a disability. She has served on many national and local healthcare quality improvement projects. She is a champion for equity and hopes to inspire others to follow her lead. She believes in family centered care and shared decision making.

In this episode….

This podcast episode features patient partner Ashley Bates-Crowley. She shares her perspective of what meaningful patient engagement and equity looks like. She has been empowered to promote engagement and mentorship in her community. You will be inspired to become a health equity champion. The true meaning of equity in healthcare quality improvement will be highlighted and how to move in the spirit of collaboration.

Here’s a glimpse of what you will learn:

• What is meaningful engagement through the patient lens
• How to provide a culture where every voice is an equal stakeholder
• Why compensation is an important factor to achieve equitable engagement