Time to Listen to Sickle Cell Disease (SCD)

Time to Listen to SCD, the flagship program of the Pathways To Trust patient-provider communication training initiative, debuted February 17, 2021, at Overlook Medical Center in Summit, NJ. The interactive workshop titled "Listening with the Heart Through Telehealth" provided medical students an opportunity to learn about the history of racism in healthcare and the effect a biased system has had on the treatment and outcomes for African-American SCD patients, as well as the opportunities telehealth presents to improve their care.

 
Listening With the Heart Through Telehea
 
Time to Listen to Sickle Cell Disease

Historically, the SCD patient population has faced significant hurdles. Racial bias, deeply embedded in the healthcare system, has denied African-Americans access to high quality medical care or even adequate pain relief. The assumption that people of color complaining of agonizing pain are merely drug seekers has plagued this community for generations, and is now intensified in the wake of the opioid crisis.

Pathways To Trust has partnered with Rare Advocacy Movement (RAM), a network of rare disease patient advocates, to tailor communication training events that address the specific needs of sickle cell patients and their caregivers, including:

  • Systemic racism in healthcare
     

  • Historical distrust in the healthcare system
     

  • In the wake of the opioid crisis, HCPs are hindered from prescribing narcotics for pain, resulting in inadequate pain relief

To counteract this trend, Pathways To Trust has developed an initiative called Time to Listen to SCD. We are launching this program in the fall of 2020 with exciting initiatives to improve communication between SCD patients and HCPs:

  • Time to Listen to SCD is the Pathways To Trust flagship initiative. It encompasses educational programs for HCPs and patients. These programs are developed using the input of various healthcare stakeholders including patients, patient advocates, HCPs, health systems and pharma

 

  • Time to Listen to SCD in the Emergency Department combines disease-specific clinical information on the symptoms, diagnostic protocols and treatments for SCD with interactive, compassionate communication training to help ED staff provide better patient experiences leading to better outcomes
     

  • SCD Health Literacy Program for Patients Transitioning from Pediatric to Adult Care -- an interactive learning program to help SCD patients become more comfortable with healthcare vocabulary and communicate more effectively with HCPs

  • Listening with the Heart -- Continuing our successful in-person program for medical students at Overlook Hospital virtually in the time of COVD-19, we are focusing on helping students conduct an effective and compassionate telehealth follow-up visit for a transitioning SCD patient.

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Compassionate Communication Training Programs

Pathways To Trust™ founders Cheryl and Maybelle have facilitated trainings for thousands of healthcare professionals in the art of compassionate communication and relationship building. Successful programs they have facilitated include:

  • Listening With The Heart
    An interactive program training medical students in how to communicate with patients during physician visits including best practices for building a relationship quickly, putting uncomfortable patients at ease, teasing out barriers to compliance and working toward therapeutic partnerships. Events include in-person and virtual participants.

     

  • Time to Listen to SCD Through Telehealth
    Dynamic training experiences highlighting the benefits of telehealth for SCD patients.facing increased risk and racial bias during in-person visits. Events include training on how to perform a physical exam via telehealth and treating a mild VOC remotely, as well as interactive exercises.
     

  • Difficult Dialogues in the Emergency Department
    Using role playing and improvisational techniques, Difficult Dialogues in the ED focuses on helping HCPs engage in a productive dialogue to guide patients in making hard decisions about their health care, or to reveal a medical error in a way that eases the family's pain and promotes healing after a tragic experience.

     

  • Interactive Tutorials
    Educational modules for clients featuring interviews and role playing to guide patients and HCPs toward effective physician encounters.

Therapeutic partnerships born from compassionate communication generate trust which leads to improvements in all-around clinical, emotional and quality of life outcomes. When patients believe that their physician cares about what they are feeling, the patients see themselves as a partner in their care. They tolerate pain better, understand their conditions more thoroughly, express their symptoms more clearly and more closely adhere to prescribed treatment at home rather than frequenting the Emergency Department. In addition, their quality of life and daily functioning are better than those who do not believe they have the emotional support of their physicians.

​Rare disease patients especially need a trusting relationship with their healthcare providers. There is often a dearth of knowledge about their conditions, and they may experience very unusual symptoms. Many rare diseases disproportionately affect people of color who already struggle with significant disparities in access to healthcare. These patients are most effectively treated when their clinicians communicate compassionately with them and work together to achieve the best possible outcomes.

Bringing Stakeholders Together

The future of patient-centricity lies in coordinating the efforts of multiple stakeholders to deliver improved clinical and quality of life outcomes. At Pathways To Trust, we know that healthcare is more effective when we work together. We all want the best patient care, and each stakeholder brings something to the table to contribute to making that happen. Pathways To Trust facilitates conversations between healthcare stakeholders including patients, patient advocates, HCPs, health systems, payors and pharma to help them share resources and ideas to improve patient experiences and outcomes. that cooperation through disease-specific trainings for patients and healthcare professionals to work jointly toward improved health and quality of life outcomes.

Patients and Patient Advocates

As a patient, you know better than anyone what it means to live with a chronic or rare illness. You know the benefits -- and the downsides -- of treatments and the challenges of adhering to your doctor's advice. You know the loneliness and frustration you feel when clinicians, loved ones and everyone you meet either does not understand or doubts your symptoms. You live with all the physical, psychological, emotional social and financial challenges your condition plants in your way.

​As a patient advocate, you are acutely aware of what patients experience and the toll chronic diseases take on caregivers. The more you learn about cutting-edge treatments, the better care you can offer. You are working toward the day when new treatments are available and the healthcare industry improves the quality of life for patients and those who love them.

It's Time to Listen to make your dreams of a better future come true.

It's Time to Listen. It's time to hear your voice. It's time for healthcare to recognize that you are an expert in your own disease. It's time for your perspective to be part of the plans for healthcare providers, health systems, pharma and payors.

At Pathways To Trust we make these conversations happen. Click here to learn about how we involve all stakeholders in programs to improve patient outcomes and experiences.

Healthcare Providers and Health Systems

You are a healthcare provider, you chose the medical field to heal and to support patients. You know that the best way to help the patients you see is to work in a partnership with them -- to understand their struggles so you can work together to achieve what you both understand to be the best outcome. You know It's Time to Listen, which is why you need patients and caregivers to trust you and communicate openly and honestly. It's time to put you in touch with patients who can work with you to help you provide the supportive care you are committed to.

Healthcare systems are in the business of providing the best possible clinical and quality of life outcomes. The more you learn about cutting edge treatments, the better care you can offer for all patients, including conventionally marginalized people and those struggling with rare disease.. The more you understand about a patient's perspective, the better patient experience you can provide. It's Time to Listen so you have access to those who can help you keep your finger on the pulse of new breakthroughs and patient needs.

Click here to learn about our HCP programs that can help you have the conversations you want with the people who can help you deliver excellent quality care.

Healthcare Industry Leaders

The pharma industry is driven by the need to improve outcomes for patients. Pharma leaders put patients' needs at the forefront -- you have known It's Time to Listen to patients for a long time.

 

​Payors ensure that effective treatments are delivered to patients in a timely manner. You want to hear from patients about what works to improve their health and quality of life and what does not. you look forward to hearing about the latest breakthroughs  from pharma and how they can help your subscribers receive the best care.

Pathways To Trust wants to help you reach your goal of patient-centricity. Click here to learn about our programs that will assist you in sharing with the healthcare world how you can help fill the needs of patients, caregivers, healthcare providers and payors through a variety of avenues: training programs, symposia, online communities and more.