Musings on Social Media and GIST (Gastrointestinal Stromal Cancer)

Abstract

According to some young people I know, social media means nothing more than online dating. For others, however, it is a primary avenue for connectedness to the outside world and their major source of information and news. In so far as they follow selected and targeted choices of sites, it is the way that some individuals reinforce their own ideas. One 28-year-old told me: “Who needs books or magazines or libraries anymore? The Internet and social media feeds have everything I need.” I myself do not use social media platforms, but you can see from my reference list at the end of this Note that I sometimes spend considerable time searching the Internet! You may ask how discussing social media is relevant to Clinical Therapeutics (CT). Our CT staff uses a targeted social media strategy, primarily through Twitter, to broaden awareness of articles we publish and to make these articles (and authors) more discoverable on CT’s journal site and on ScienceDirect, the research platform used by academic and government institutions for online access to CT. I think it is important to separate the use of the Internet and social media for educational or business purposes from its interpersonal uses. It is also important to distinguish social media usage from smartphone and tablet activities, including exercise tracking and gaming. Companies that report on such usage do not regularly parse these out. One of our Guest Editors this month, Ms. Stella Stergiopoulos, has assembled a Specialty Update on the use of social media and mobile device applications in drug development.1Stergiopoulos S. #PatientVoiceMatters: How social media is bringing patients and biopharmaceutical companies together to improve drug development.Clin Ther. 2017; 39: 2170-2172Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar, 2Lamberti M.J. Awatin J. Mapping the landscape of patient-centric activities within clinical research.Clin Ther. 2017; 39: 2196-2202Abstract Full Text Full Text PDF PubMed Scopus (21) Google Scholar, 3Getz K. Examining and enabling the role of health care providers as patient engagement facilitators in clinical trials.Clin Ther. 2017; 39: 2203-2213Abstract Full Text Full Text PDF PubMed Scopus (16) Google Scholar, 4Milne C. The use of social media in orphan drug development.Clin Ther. 2017; 39: 2173-2180Abstract Full Text Full Text PDF PubMed Scopus (17) Google Scholar, 5Houseman L.T. "I'm home(screen)!": social media and mobile applications in healthcare have arrived.Clin Ther. 2017; 39: 2189-2195Abstract Full Text Full Text PDF PubMed Scopus (19) Google Scholar, 6Anand A. Brandwood H.J. Evans M.J. Improving patient involvement in the drug development process-case study of potential applications from an online peer support network.Clin Ther. 2017; 39: 2181-2188Abstract Full Text Full Text PDF PubMed Scopus (9) Google Scholar These articles describe the ways in which smartphone technologies and social media platforms are being used to involve patients in both the drug development process and in the management of their own health. Social media has many constructive uses, but it also has a considerable downside. The concerns expressed below evolved from the homework I did while preparing to write this Note; they have no direct connection to the use of the Internet and social media in drug development. I do not mean to disparage the value social media has in certain areas such as keeping families in touch with each other by sending photos or as a means of sending words of support to loved ones and friends who are ill or facing difficult times. What follows are some interesting estimates and findings about the Internet, mobile apps, and social media use. However, it is important to realize that any figures I cite below represent continuously moving targets and selected points in time. Moreover, the popularity of any given social media site usually changes over time. One report by Adweek notes that time spent involved with social media currently exceeds time devoted to eating or to person-to-person socializing.7Cohen D. How much time will the average person spend on social media during their life? (Infographic).Adweek. 2017; (http://www.adweek.com/digital/mediakix-time-spent-social-media-infographic. Accessed September 16, 2017)Google Scholar These data were compiled by Mediakix, a marketing agency linking major brands with social media-engaged audiences. In fact, among registered users, time spent with social media was second only to watching television; sleeping, a behavior that typically consumes 8 h/d, was not mentioned. Facebook (35–50 min/d) appears to be the most commonly visited social media platform, followed by Snapchat (25 min/d) and Instagram (15 min/d).7Cohen D. How much time will the average person spend on social media during their life? (Infographic).Adweek. 2017; (http://www.adweek.com/digital/mediakix-time-spent-social-media-infographic. Accessed September 16, 2017)Google Scholar, 8Mediakix. How much time do people spend on social media? http://mediakix.com/2016/12/how-much-time-is-spent-on-social-media-lifetime/#gs.MnwGkoA. Accessed September 16, 2017.Google Scholar, 9Samway T. Facebook: social network or pervasive global media giant? September 13, 2017. https://au.investing.com/analysis/facebook-social-network-or-pervasive-global-media-giant-200196463. Accessed September 16, 2017.Google Scholar YouTube watching (40 min/d) like television comes in above Facebook. Twitter involvement is reported to be at about 1 min/d, a surprisingly low figure that likely has increased in 2017, given its new-found status for postings by prominent political, sports, and entertainment figures. There were over 2 billion monthly Facebook users recorded in mid-2017, an increase of 17% compared with 2016.9Samway T. Facebook: social network or pervasive global media giant? September 13, 2017. https://au.investing.com/analysis/facebook-social-network-or-pervasive-global-media-giant-200196463. Accessed September 16, 2017.Google Scholar The most common age cohort is 25 to 34, about 30% of all users. This site also reported that over 300 million persons in Europe are on Facebook. Approximately 70 million companies maintain pages on Facebook,10Zephoria Digital Marketing. The top 20 valuable Facebook statistics – updated August 2017. https://zephoria.com/top-15-valuable-facebook-statistics. Accessed September 16, 2017.Google Scholar and an estimated 56% of Americans have entered a profile on one or more social media platforms.11Baer J. 11 shocking new social media statistics in America. June 6th, 2012. http://www.convinceandconvert.com/social-media-research/11-shocking-new-social-media-statistics-in-america. Accessed September 16, 2017.Google Scholar Another interesting finding is that Facebook use comprises an estimated 14% of the time spent online by people who use the Internet.12Adler E. Social media engagement: the surprising facts about how much time people spend on the major social networks. July 7, 2016. http://www.businessinsider.com/social-media-engagement-statistics-2013-12. Accessed September 16, 2017.Google Scholar Interested readers should consult Digital Trends Staff’s history of social media.13Digital Trends Staff. A history of social networking. May 14, 2016. https://www.digitaltrends.com/features/the-history-of-social-networking/#ixzz4VTOGD85t. Accessed September 16, 2017.Google Scholar I am alarmed by these social media use figures and those that follow, especially by what they suggest about changes in our ways of communicating. Although social media ties people together, it seems impersonal, and I suspect that some individuals devote less thought to a tweet than they would to a letter or telephone call. One report found that approximately 20% of Americans use social media more than twice a day, calling this degree of usage a “social habit.”11Baer J. 11 shocking new social media statistics in America. June 6th, 2012. http://www.convinceandconvert.com/social-media-research/11-shocking-new-social-media-statistics-in-america. Accessed September 16, 2017.Google Scholar Another report stated that the average American social media user maintains five accounts and browses them for an average of 1 hour 40 min/d.14Davidson L. Is your daily social media usage higher than average? May 17, 2015. http://www.telegraph.co.uk/finance/newsbysector/mediatechnologyandtelecoms/11610959/Is-your-daily-social-media-usage-higher-than-average.html. Accessed September 16, 2017.Google Scholar When should we begin to worry about social media addictions? As noted above, I am not worried about the numerous grandparents I know who use Facebook to receive pictures of their grandchildren. I do worry about the increasing use of cellphones to check social media sites by youth and children. Here are two troubling quotations from a CNN post: (1) “I would rather not eat for a week than get my phone taken away. It's really bad,” said Gia, a13 year old. “I literally feel like I'm going to die”; and (2) “When I get my phone taken away, I feel kind of naked,” said Kyla, another 13 year old. “I do feel kind of empty.”15Hadad C. Why some 13-year-olds check social media 100 times a day. October 13, 2015. http://www.cnn.com/2015/10/05/health/being-13-teens-social-media-study/index.html. Accessed September 16, 2017.Google Scholar CNN also reports that some 13 year olds check their social media outlets over 100 times/d. Here are a few more disquieting findings about kids: (1) ~50% of youngsters between the ages of 8 and 16 ignore Facebook’s age regulations; (2) from an average starting age of 12, 43% were in contact with persons unknown to them; (3) by the age of 10, 59% of children are networking via social media; (4) starting from the age of 11, 21% had posted negative comments about others; (5) at age 11, some try to create a fake online profile for themselves or post an image or video online; and (6) 26% admitted to stealing some other youth’s profile without permission. I could not locate the actual survey done by Opinium Research from which these data arose; they are discussed by Dr. Richard Woolfson, a spokesperson for the safety advisory Internet site, Knowthenet.16Daily Mail Reporter. More than half of children use social media by the age of 10: Facebook is most popular site that youngsters join. November 19, 2014. http://www.dailymail.co.uk/news/article-2552658/More-half-children-use-social-media-age-10-Facebook-popular-site-youngsters-join.html#ixzz4sfoy0c30. Accessed September 16, 2017.Google Scholar Readers, I wonder if you are concerned about this as much as I am. We are fortunate this month to have two Specialty Updates. The second Update is on gastrointestinal (GI) cancers and was assembled by Dr. Andrea Bullock, our Topic Editor for Oncology and Hematology.17Bullock A. Gastrointestinal tract malignancies: obstacles and advancements.Clin Ther. 2017; 39: 2122-2124Abstract Full Text Full Text PDF PubMed Scopus (1) Google Scholar, 18Padhi P. Pasricha G. Daboul N. Monga D.K. Management of well-differentiated gastroenteropancreatic neuroendocrine tumors (GEPNET): a review.Clin Ther. 2017; 39: 2146-2157Abstract Full Text Full Text PDF PubMed Scopus (16) Google Scholar, 19Saung M.T. Zheng L. Current standards of chemotherapy for pancreatic cancer.Clin Ther. 2017; 39: 2125-2134Abstract Full Text Full Text PDF PubMed Scopus (58) Google Scholar, 20Gong J. Wu D. Chuang J. et al.Moving beyond conventional clinical trial endpoints in treatment-refractory metastatic colorectal cancer: a novel composite quality of life and symptom control endpoint.Clin Ther. 2017; 39: 2135-2145Abstract Full Text Full Text PDF PubMed Scopus (10) Google Scholar, 21Lowell A. Ervin C. Lapuerta P. et al.Understanding the patient experience with carcinoid syndrome: exit interviews from a randomized, placebo-controlled study of telotristat ethyl.Clin Ther. 2017; 39: 2158-2168Abstract Full Text Full Text PDF PubMed Scopus (33) Google Scholar Aside from having been a surgical patient and the respect this has given me for skilled practitioners, my exposure to surgery was limited to medical school clerkships and an internship rotation. I have distinct memories of the first case I scrubbed in on during my third-year clerkship, that of a 68-year-old who had come in because of intractable vomiting of blood and abdominal pain. Holding a retractor gave me a clear view of the treatment process, although I did not know what the tumor looked like on the inside of the stomach until it was excised. On the outside it looked like a glistening, protruding, cyst-like ball about the size of a tangerine. The operation was a success, and that night I did a lot of reading so I could discuss the case at rounds. The patient had a GI stromal tumor located in his stomach, now regularly referred to as a GIST. I learned that these tumors, unlike the preponderance of GI tumors, arise from connective tissue, specifically from interstitial cells identified by and named after Ramón y Cajal.22Nobelprize.org. Santiago Ramón y Cajal – Biographical. https://www.nobelprize.org/nobel_prizes/medicine/laureates/1906/cajal-bio.html. Accessed September 16, 2017.Google Scholar In recent years, a molecular origin has been found for GISTs that involves the proto-oncogene c-KIT, a tyrosine kinase also known as CD117. Nonsurgical treatments flowed from this discovery, and three protein kinase inhibitors (PKIs) are currently approved for the treatment of GIST at its different pathologic stages: imatinib (Gleevec), sunitinib (Sutent), and regorafenib (Stivarga). Imatinib is available as a generic in the United Kingdom but not yet for a GIST indication.23Islamagic E. Hasic A. Kurtovic S. et al.The efficacy of generic imatinib as first- and second-line therapy: 3-year follow-up of chronic myeloid leukemia patients.Clin Lymphoma Myeloma Leuk. 2017; 17: 238-240Abstract Full Text Full Text PDF PubMed Scopus (21) Google Scholar This is a good example of how basic research has expanded our range of treatment options. Surgery is still used for smaller tumors. GIST did not reenter my thinking for 46 years when an early mentor of mine developed a GIST at age 95. His GI bleeding stopped after conservative treatment, and he refused a trial of imatinib. He died of unrelated causes four years later. I mention Cajal above. In a neuroscientific sense, he was also a mentor of mine. His full name was Santiago Ramón y Cajal; he was awarded the Nobel Prize in Physiology or Medicine in 1906.22Nobelprize.org. Santiago Ramón y Cajal – Biographical. https://www.nobelprize.org/nobel_prizes/medicine/laureates/1906/cajal-bio.html. Accessed September 16, 2017.Google Scholar A superb neuroanatomist, he is considered by many to be the father of modern neuroscience. This month’s Oncology and Hematology Update is a special feature that is available as FREE ACCESS content on the journal’s website. One of the previous Oncology and Hematology Updates, “An Update on Cancer Genetics,” was published in Volume 38, Number 7 of Clinical Therapeutics. To view the previous Update, see the articles below:Shader R. Genomics and the Prediction and Characterization of Cancer and Some Observations About Pancreatic Cancer.Bullock AJ. Cancer Genomics: Targeting Inherited Risk and Somatic Mutations in Precision Oncology.Zugazagoitia J, Guedes C, Ponce S, Ferrer I, Molina-Pinelo S, Paz-Ares L. Current Challenges in Cancer Treatment.Chuang JC, Shrager JB, Wakelee HA, Neal JW. Concordant and Discordant EGFR Mutations in Patients With Multifocal Adenocarcinomas: Implications for EGFR-Targeted Therapy.Rabenau K, Hofstatter E. DNA Damage Repair and the Emerging Role of Poly(ADP-ribose) Polymerase Inhibition in Cancer Therapeutics.Pectasides E. Genomic Alterations and Targeted Therapy in Gastric and Esophageal Adenocarcinoma.Underhill ML, Germansky KA, Yergelun MB. Advances in Hereditary Colorectal and Pancreatic Cancers.Peters ML, Tseng JF, Miksad RA. Genetic Testing in Pancreatic Ductal Adenocarcinoma: Implications for Prevention and Treatment. This month’s Oncology and Hematology Update is a special feature that is available as FREE ACCESS content on the journal’s website. One of the previous Oncology and Hematology Updates, “An Update on Cancer Genetics,” was published in Volume 38, Number 7 of Clinical Therapeutics. To view the previous Update, see the articles below: Shader R. Genomics and the Prediction and Characterization of Cancer and Some Observations About Pancreatic Cancer. Bullock AJ. Cancer Genomics: Targeting Inherited Risk and Somatic Mutations in Precision Oncology. Zugazagoitia J, Guedes C, Ponce S, Ferrer I, Molina-Pinelo S, Paz-Ares L. Current Challenges in Cancer Treatment. Chuang JC, Shrager JB, Wakelee HA, Neal JW. Concordant and Discordant EGFR Mutations in Patients With Multifocal Adenocarcinomas: Implications for EGFR-Targeted Therapy. Rabenau K, Hofstatter E. DNA Damage Repair and the Emerging Role of Poly(ADP-ribose) Polymerase Inhibition in Cancer Therapeutics. Pectasides E. Genomic Alterations and Targeted Therapy in Gastric and Esophageal Adenocarcinoma. Underhill ML, Germansky KA, Yergelun MB. Advances in Hereditary Colorectal and Pancreatic Cancers. Peters ML, Tseng JF, Miksad RA. Genetic Testing in Pancreatic Ductal Adenocarcinoma: Implications for Prevention and Treatment.