Learning About PSC in the Era of Social Media

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Presentation transcript:

Learning About PSC in the Era of Social Media Sumera H. Rizvi, M.D. Konstantinos N. Lazaridis, M.D. Senior Associate Consultant, Consultant, Gastroenterology & Hepatology Gastroenterology & Hepatology Assistant Professor of Medicine Professor of Medicine

PSC and Social Media What is out there? YouTube Twitter Facebook (e.g. support groups) Blogs Other

PSC and Social Media What is reliable information? Trustworthy Up-to-date Unbiased Other

PSC and Social Media Which information to be skeptical of? Biased/conflict of interest Commercial – intended to generate money, not educate (e.g. WebMD.com) Accuracy i.e. is it based on scientific literature Home remedies Dietary supplements Credible source Outdated

PSC and Social Media Trustworthy Resources PSC Partners Seeking A Cure http://pscpartners.org/ NIH/NIDDK https://www.niddk.nih.gov/health-information/liver-disease/primary-sclerosing-cholangitis ClinicalTrials.gov https://clinicaltrials.gov/ct2/results?recrs=&cond=PSC&term=&cntry=US&state=&city=&dist=

PSC and Social Media Trustworthy Resources NORD https://rarediseases.org/rare-diseases/primary-sclerosing-cholangitis/ NoPSC https://www.med.uio.no/klinmed/english/research/groups/primary-sclerosing-cholangitis/ PSC Forum https://forumresearch.org/projects/psc-forum

PSC and Social Media Trustworthy Resources Mayo Clinic Connect https://connect.mayoclinic.org/page/psc/ https://connect.mayoclinic.org/group/transplants/ Websites of Medical Societies https://liverfoundation.org/primary-sclerosing-cholangitis/ Websites of Academic Medical Centers

Why Do we Need a Mayo Clinic Blog for PSC? Knowledge is power Communication matters

Why Do we Need a Mayo Clinic Blog for PSC? Education and communication tool Patients Providers Public Disease and research program awareness Enhancement of patient recruitment for studies

Why Mayo Clinic Connect? Existing platform Available expertise Connection with Mayo Social Media Available moderators

Thank You Questions?