Co-author Dr. Adebanke Adebayo presented our published research about the ASB at the 109th annual conference of the National Communication Association. She was a panelist for the “Health Communication Data Blitz: Patient-Provider Communication and Care” session.
Standing room only!
Reuniting three of the co-authors (left to right): Dr. Kathy Rowan, Dr. Adebanke Adebayo, and Deb Boedicker.
Click on the title below to read more about our research and find a link to the PubMed peer-reviewed paper.
Published Research: Evaluating the Amyloidosis Speakers Bureau
The Amyloidosis Speakers Bureau (ASB) is an initiative sponsored by Mackenzie’s Mission to close the medical education gap about this disease. The core of this initiative is a live presentation, where patient educators share their personal journey with amyloidosis — from symptoms, through diagnosis, treatment, and life today battling this rare and incurable disease. Following each presentation the attendees are invited to receive ongoing information about the many facets of the disease. We are pleased that many have accepted.
To expand the body of information sent to those interested, earlier in 2023 we designed a new series of short videos recorded by our ASB advisors, the vast majority of whom are practicing physicians. The topics are varied, discussing symptoms, diagnosis, treatments, clinical trials, multidisciplinary care teams, and racial/ethnic inequities of both AL and ATTR (hereditary and wild-type).
In our Education Hub you can select to view all of our Expert Insights, and be sure to sign up for our newsletter to stay abreast of future releases.
This series offers an extraordinary education opportunity for the medical community, and we believe the patient community will also find this series valuable.
Here’s a LINK to the website page.
While our primary focus at the Amyloidosis Speakers Bureau (ASB) is on medical school students and internal medicine residents, we are very open to presenting to other groups that are aligned with our objective of closing the education gap within the medical community.
In early 2023, a Tufts University School of Medicine student in the PA program learned of our upcoming May presentation to the medical students. Conversations ensued with the medical school course director, PA program director, and Mackenzie’s Mission regarding the possibility of the PA school class joining the medical school class for the ASB presentation. Success!
So in May 2023, the ASB presented to 200 Tufts University School of Medicine medical students and 50 physician assistant students!
The experience and feedback from the PA students to their program director was so positive that all have agreed to make this an annual event within their curriculum!
In March of 2021 we lost a dear friend, co-founder, and operating committee member of the Amyloidosis Speakers Bureau (ASB) to amyloidosis … Charolotte Raymond.
We believe it important to continue to be a patient-led organization, so we have proudly added Lane Abernathy to our Operating Committee. Lane began as a patient speaker with the ASB in 2019, and expanded her involvement in early 2020 to help us deepen our support for our speakers and develop their presentations. She has been a wonderful supporter of our efforts and we appreciate all she does for the ASB. As an operating committee member she will help guide our educational initiative long into the future.
A groundbreaking study to evaluate bringing the patient voice to medical education – Evaluating the Amyloidosis Speakers Bureau
The content of medical education is appropriately clinically centered. The delivery of this content remains relatively unchanged over the decades – typically taught by medical professionals through lectures, PowerPoint presentations, and patient case studies. We posit that there is an essential missing component: the patient voice. During the didactic years, medical students rarely hear from patients about their symptoms, diagnostic journey, emotional management, support and resources, and relationship with the medical community. These insights can offer impactful and durable education that complements traditional didactics in developing future medical practitioners.
Why is this important? Lack of awareness in the healthcare field is among the most critical and urgent challenges facing the amyloidosis community today. Raising awareness to accelerate diagnosis, coupled with available FDA-approved treatments, leads to a significant improvement in patient lives.
At the Amyloidosis Speakers Bureau, two years ago we set out to understand whether our patient educators were making an impact following a presentation to U.S. medical students. Would their narratives elevate the students’ understanding of this rare disease and influence their attitudes and behavioral intent regarding patients?
In short, our study findings indicated “yes.”
The paper finds that, in a study where medical students were randomly assigned to either listen to an amyloidosis patient’s story or to a control group, those who heard the patient’s diagnostic and treatment journey differed in attitudes and intent from those in the control group. Those who heard the patient’s story were significantly more likely to intend to improve their communication with patients, learn more about amyloidosis, and agree that listening to patients is a vital part of diagnosis. To add further credibility to our research, this paper is peer-reviewed by two well-known amyloidosis experts.
We invite you to learn more about the Amyloidosis Speakers Bureau and our educational initiative to close the medical education gap at www.mm713.org/speakers-bureau/.
Click HERE for the PubMed LINK to the peer-reviewed open access research publication (i.e., full text is available free for all to read)
On October 15, 2023 ASB patient educator Sean (accompanied by caregiver/wife Robin) shared his journey with hereditary ATTR amyloidosis at the NORD Students for Rare Summit in Washington DC. These student leaders from medical schools across the U.S. had the special opportunity to learn about hereditary amyloidosis and the patient experience through Sean’s story.
Hosted by Muriel Finkel and the Amyloidosis Support Groups (ASG), Deb Boedicker presented the Amyloidosis Speakers Bureau at the ASG bi-annual ATTR conference.
Mackenzie’s Mission was welcomed to The Chester S. Keefer, M.D. Society at the Boston University Chobanian & Avedisian School of Medicine by dean Karen Antman, M.D.
The Society, named for a distinguished former dean who led the nation in developing policy for the civilian use of penicillin during World War II, and significantly enhanced the research reputation of the School, honors the generosity and support of individuals whose lifetime giving has reached $50,000 or more.
We are grateful to the Mayo Clinic for the recognition of our ongoing support of their Amyloidosis Research Fund. Starting in 2017, shortly after Mackenzie’s Mission was founded, our cumulative support has been meaningful.
Dr. Morie Gertz at the Mayo Clinic works with a multidisciplinary team of experts and helps to lead research initiatives which are widely recognized worldwide as one of the original amyloidosis centers of excellence.
While we know that funding research, bio banks, conducting clinical trials, and more requires significant funds, it is our hope that our year-to-year support helps them do more and make an even bigger difference.
We are eternally grateful to the amyloidosis team at the Mayo Clinic and all they do for our patient community to improve lives.
We are grateful for the recognition of our ongoing support of the Boston University School of Medicine Amyloidosis Center and their critical research to advance knowledge and treatments for amyloidosis patients.
Led by Dr. Vaishali Sanchorawala, director, she oversees a multidisciplinary team of experts and research initiatives which are widely recognized as a longstanding worldwide amyloidosis center of excellence.
We are committed to continuing to support their work into the future, and are confident their insights will benefit patient lives, both today and tomorrow.
Thank you for all you do!