Social media can be a huge time waster or a valuable resource. Both doctors and patients can benefit from social media if used in the right way, like improving outcomes and survival for myeloma patients. A special session on using social media was held at the American Society of Hematology meeting that included Dr. Joseph Mikhael (Mayo Clinic), Dr. Mike Thompson (Aurora Health Care), Dr. Irene Ghobrial (Dana-Farber), Dr. Guillermo Garcia-Manero (MD Anderson) and Jenny Ahlstrom (myeloma patient from the Myeloma Crowd). The group discussed ways of using social media to make an impact. Dr. Ghobrial shared her experience on using social media to promote her open observational study for MGUS and smoldering myeloma patients called PCrowd. It is a project that has international reach because of social media. Dr. Mike Thompson shared ways that doctors can get the word out about key information in a quick and relevant way. He mentioned ways that doctors can use social media to benefit the whole community:
The group discussed the pros and cons of social media in medicine. It was agreed that while there were more pros than cons, doctors still needed to avoid:
Myeloma patient Jenny Ahlstrom shared how she used social media to create a patient community, the Myeloma Crowd. She also used social media to:
In this last meeting, the #ASHSM hashtag from 11/30 – 12/11 had the following stats:
In short, social media is a powerful tool that is accessible to everyone (doctors AND patients) to quickly share relevant information, offer support and advance a cure for rare disease like multiple myeloma. Join us to share this and other posts to help patients get their very best outcomes!
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.