Impact of Pathologist Involvement in Sarcoma and Rare Tumor Patient Support Groups on Facebook: A Survey of 542 Patients and Family Members

Abstract

Context.— Patients with rare tumors have difficulty finding reliable information about their disease. Facebook patient support groups allow patients to educate one another. Objective.— To investigate how these patients perceive the value of pathologists, both in Facebook groups and real-world patient care. Design.— Survey links were posted in 12 Facebook patient groups: 6 with an active pathologist member (angiosarcoma, epithelioid hemangioendothelioma, epithelioid sarcoma, dermatofibrosarcoma protuberans [×2], and desmoid fibromatosis), and 6 without “active” pathologist involvement (aggressive angiomyxoma, chondrosarcoma, Ewing sarcoma, leiomyosarcoma, liposarcoma, and osteosarcoma). Results.— A total of 542 people responded (403 were patients): 264 from groups with a pathologist, and 278 from groups without active pathologist involvement. Of groups with an active pathologist, respondents agreed the pathologist's posts helped them better understand their disease (107 of 119; 90%) and relieved some of their disease-related anxiety (92 of 119; 77%). And for these groups 98% (117 of 119) of respondents agreed that having a pathologist in their group was a good thing; 83% (192 of 232) wanted more pathologists involved. More respondents from groups with an active pathologist (219 of 236; 93%) than without one (215 of 252; 85%) agreed: “pathologists are an important part of the patient care team for patients with cancer and other rare tumors” (P = .008). Conclusions.— This study is the first to evaluate the impact of pathologist interaction with Facebook patient support groups and to assess perceptions about the specialty of pathology from a large group of patients with rare tumors. Pathologist involvement in Facebook patient groups appears to positively influence patient perception of the importance of pathologists. We hope these data will encourage more pathologists to participate in Facebook patient support groups.

Facebook Discussion Groups Provide a Robust Worldwide Platform for Free Pathology Education

“…It can be used as a public site for pathologists to interact with nonpathologists (including patients), sharing who we are, what we do, and what value we add to health care. 8,12 It also serves as a way for pathologists to join forces with other pathologists, and the use of surgical pathology groups on Facebook demonstrates this. An attending physician giving a lecture or an unknown conference at a residency program may reach, at most, a few dozen pathologists, and a renowned expert presenting at a national meeting may engage a few hundred or even a few thousand.…”

Using a Facebook group to facilitate faculty-student interactions during preclinical medical education: a retrospective survey analysis

“…There is now a wide body of literature on the use of social media in medicine. Social media platforms allow physicians to network with one another, share medical knowledge, interact with patient groups, advocate on behalf of rare diseases, and provide general education to the non-medical public [35][36][37][38][39][40][41][42][43]. Among these platforms, FB is the largest and most well-known.…”

Social Media Use for Pathologists of All Ages

“…I volunteer in a variety of sarcoma and other rare cancer patient Facebook support groups, where I educate patients and also learn from them about their diseases. 9,15,24 I also share pathology content on Instagram and Snapchat, but I post less frequently and tend to filter content to some extent on those platforms, posting images and topics that may appeal to a broader audience that includes many nonpathologists. 25 I create pathology teaching videos and share them on my YouTube channel (https://www.youtube.com/user/JeradM GardnerMD).…”

“…Social media platforms can be used as robust tools for conducting formal research on a variety of topics. 15 Professional social media activities can be included in one's curriculum vitae and even have the potential to be used as additional evidence supporting an application for academic promotion and tenure. 28,29 Social media is an incredibly powerful tool that can be leveraged to accomplish traditionally recognized academic achievements with greater efficiency and reach than has been possible in the past.…”

“…2 Facebook, Twitter, and other social media platforms provide numerous potential benefits to the global pathology community. [2][3][4][5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21] Despite this growing popularity and acceptance, some pathologists are still reticent to use social media professionally. 22,23 One of the authors (J.M.G.)…”