Words and Actions Matter: A Case Study
HEET Members
India El, Leo Hesse, Nykema Mpama, Ariqa Everett, Tamara Lobban-Jones
Completed
2022
Collaborator
Blueprint Medicines, a global precision therapy company that aims to invent life-changing therapies for people with cancer and blood disorders.
Some information has been redacted intentionally for privacy purposes.
Summary
Blueprint Medicines collaborated with the Health Equity Emissary Team (HEET) of Diverse Health Hub to produce an in-person internal company-wide event. The goal was to learn from diverse patient perspectives by peeling back the layers around patient experiences within the clinical trial and healthcare setting. The huddle dug deep into understanding the power of words and the impact on patient decisions from both physician and patient perspectives.
Post-huddle, attendees walked away with actionable solutions that not only raise awareness, but also enable Blueprint Medicines to implement actions that help them be a more allied company in working with and for diverse patients. HEET developed a multipage patient and care partner informed huddle report for future reference by internal employees and staff. Both organizations viewed this huddle as successful.
Introduction
Blueprint Medicines (BPM) works to improve the lives of patients with genomically defined diseases. They seek to be a leader in including patient feedback at every stage of the drug development process. Blueprint is committed to ingraining patient-centricity into its infrastructure. An important priority is learning about the layers of the BIPOC patient journey.
Approach
BPM collaborated with the Health Equity Emissary Team (HEET) to produce the Words (and Actions) Matter Huddle. The huddle was hosted by health advocate Dr. Nicole Rochester; Lung Cancer Expert Jhanelle E. Gray, MD; and lung cancer survivors Ronald, Juanita, and Diane. The goal was to gain patient perspectives by peeling back the layers around Black, Indigenous, and People of Color (BIPOC) experiences within clinical trial and healthcare settings. Over 340 members of Blueprint Medicines staff attended. A crowdsourced multi-page report was developed with specific actions directly from patients and families.
Goals and Objectives
There were four objectives of the huddle:
1. Understand the power of our words and actions and their impact on patient decisions
2. Gain patient perspectives by peeling back the layers around experiences within clinical trial and healthcare settings
3. Walk away with actionable solutions that not only raise awareness but also institute action
4. Assist BPM in being more intentional in their work with diverse patients
The Solution
The physician’s words are just as powerful as the diagnosis in playing a vital role in establishing a foundation in the patient-physician relationship. Panelists discussed the effectiveness of being intentional with words and maximizing time with the patients. Understanding the patients from their perspectives, focusing on body language, and being culturally competent each play vital roles in communication with BIPOC patients. Advocacy, from the physician and patient, worked itself into the huddle as well.
So, along with becoming culturally competent, physicians should advocate for their patients. Physicians showing support for their patients in the delivery of the diagnosis throughout the care process adds to the patients’ morale during the time. Informing the patient of the available tools and resources, such as clinical trials and how they work, provides that patient with another layer of support. Additionally, the patient must self-advocate.
A strong relationship between physician and patient will help patients to ask the necessary questions from breaking down medical terms, meaning of the diagnosis, insurance, scheduling the necessary tests, etc.
Final Takeaways and Conclusion
We asked patients the following:
How has language (used when speaking with you as a patient or potential trial participant) or actions of providers impacted your patient journey?
How do you wish biotech companies would address stigmatizing issues?
What insights do you have for other patients to best advocate for themselves?
Communication. Effective communication is critical. This includes factors like dissecting and delivering medical terms into layman's terms, educating and dispelling myths about clinical trials and the way they work, among many other topics. Patient-centered conversation should be a priority for all care team members. Language helps to knock down barriers in communication with cancer patients. Care providers should also strive to build their own cultural competency and be forward with factual information when communicating with their patients..
“Compassion and empathy…We’re living with cancer, they’re not…it’s the way you talk to people and making them feel it’s gonna be okay.”
As we learned from our distinguished huddle panel, being cognizant of our words can make a world of difference in patient care – words absolutely matter. While it may be tough for physicians to put themselves in a patient’s shoes, it is a journey that can be positive when the right attitude, resources and support are provided to the patient at the right time.
HEET recognizes perpetual health disparities are harming existing and future BIPOC generations, thus adversely affecting the health of everyone. When one segment of the population suffers, so does the collective. We remain dedicated to making a unified impact with key stakeholders to drive transformational change.
The Health Equity Emissary Team (HEET) of Diverse Health Hub is a health advocacy think tank with a multiplicity of backgrounds made up of diverse advocates working directly with key stakeholders who impact health outcomes and focus on the needs of diverse health communities.
Blueprint Medicines and associated logos are trademarks of Blueprint Medicines Corporation. © 2023 Blueprint Medicines Corporation
