Patients want diet advice, but healthcare practitioners aren't providing it, according to a survey run by Dr. Urvi Shah through the HealthTree Cure Hub, a real-world evidence patient data portal.

Recently I had the opportunity to attend the International Myeloma Workshop meeting in Vienna, Austria.  During the meeting I learned about the latest genomic advances, new drug targets, immunotherapeutic approaches being used and preliminary results to those studies, and COVID-19 in myeloma.  I was able to interview expert invited faculty on these topics for HealthTree University lessons and special fireside chats that will be coming to HealthTree soon.

Additionally, nearly 300 oral and poster abstracts were presented. Dr. Urvi Shah from Memorial Sloan Kettering Cancer Center had two of her abstracts selected for poster presentation.  We all know Dr. Shah as being one of the myeloma specialists who is very involved in our Nutrition and Wellness for Myeloma Events Chapter.  One of her posters discussed how sustained MRD negativity in multiple myeloma is impacted positively by stool butyrate and healthier plant forward diets. 

Dr. Shah’s other poster was on the findings of the nutrition survey that was run in the HealthTree Cure Hub.  This poster was entitled “Providing Nutrition Guidance for Patients with Plasma Cell Disorders – A Missed Opportunity for Hematologists and Oncologists.”

Since both of Dr. Shah’s posters were being presented during the same poster session, she asked me if I would present the poster that was based on the HealthTree Cure Hub survey data.  I was honored to do so.  The poster had a lot of interest during Friday’s poster session. I spoke to doctors worldwide.  It is globally recognized that many patients want diet advice once they receive a myeloma diagnosis. The patient voice was heard at this recent International Myeloma Workshop. 

The key take-away messages from the responses of 421 HealthTree Cure Hub users were that patients want dietary advice from the hematologist/oncologist and made healthful dietary changes when faced with a cancer diagnosis if given this advice. Patients who receive professional guidance make healthier dietary shifts.

However, most patients currently receive advice pertaining to diet/nutrition from non-medical sources and report barriers related to lack of consistent information. 

Dr. Shah outlined the next steps to be taken in her poster:

1. Develop a plasma cell disease specific dietary guidelines to be used by oncologists
2. Complete research that will support evidenced based dietary changes for plasma cell diseases
3. Disseminate information learned through research using a platform such as HeathTree’s Diet and Wellness Events Chapter
4. Institute more interventional nutrition studies to provide evidence based recommendations for individual with plasma cell diseases

I was grateful to be able to present the Dr. Shah/ HealthTree Cure Hub poster at the International Myeloma Workshop.  It made me realize that our collective voice and real world evidence is impactful and valuable. This poster illustrated how by answering a simple questionnaire we patients can impact the future direction of healthcare research.

Editor's Note: Please join the  HealthTree Cure Hub and contribute your myeloma experience to contribute to real world evidence for a faster cure.