Audun Utengen

Disease-Specific Hashtags for Online Communication About Cancer Care.

Disease-Specific Hashtags for Online Communication About Cancer Care Increasingly, patients, caregivers, and health care professionals (HCPs) go online to learn about and discuss cancer care.1 However, finding other people or organizations with similar interests can be difficult without some structure. Hashtags are user-generated tags that can organize and aggregate content on social networks. In July 2011, 2 patient advocates started a breast cancer chat on Twitter using the tag #bcsm (breast cancer social media); one of us (D.J.A.) joined as a comoderator. This same model but with hashtag #btsm was used to discuss brain tumors in January 2012. Both tags are now regularly used on Twitter by patients, caregivers, and HCPs. Dedicated hashtags may make it easier to engage in relevant conversations online for other types of cancer. In this study, we describe a way to use disease-specific hashtags similar to #bcsm and #btsm to organize and increase online discussion of cancer care.

Social Media and Myeloproliferative Neoplasms (MPN): Analysis of Advanced Metrics From the First Year of a New Twitter Community: #MPNSM

The social media platform Twitter has provided the hematology/oncology community with unprecedented, novel methods of interpersonal communication and increased ability for the dissemination of important updates in a rapidly moving field. The advent, and subsequent success, of disease-specific Twitter communities have further enabled interested healthcare stakeholders to become quickly organized around a unique set of rare medical conditions, such as hematologic malignancies, that, historically, generally lack large amounts of reliable online information. One example is the Twitter community #MPNSM (myeloproliferative neoplasms on social media), which was started approximately one and half years ago and has served as a recognized venue for discussion among many members of the MPN community, including patients, researchers, providers, and advocacy organizations. This article will focus on understanding the impact of the founding of this community via the analysis of advanced Twitter metrics of user experience, from the first year of use for this novel healthcare hashtag.

Social media in cancer care: highlights, challenges & opportunities

10.2217/fon-2016-0065

Risks and benefits of Twitter use by hematologists/oncologists in the era of digital medicine

Twitter use by physicians, including those in the hematology-oncology field, is increasing. This microblogging platform provides a means to communicate and collaborate on a global scale. For the oncology professional, an active Twitter presence provides opportunities for continuing medical education, patient engagement and education, personal branding, and reputation management. However, because Twitter is an open, public forum, potential risks such as patient privacy violations, personal information disclosures, professionalism lapses, and time management need to be considered and managed. The authors have summarized the benefits and risks of Twitter use by the hematology-oncology physician. In addition, strategies to maximize benefit and minimize risk are discussed, and resources for additional learning are provided.

Rare Cancers and Social Media: Analysis of Twitter Metrics in the First 2 Years of a Rare-Disease Community for Myeloproliferative Neoplasms on Social Media—#MPNSM

Purpose of reviewThe use of social media has now become a standard means of communication for many individuals worldwide. The use of one specific form of social media, Twitter, has increased among healthcare providers, both as a means of information gathering and as a conduit for original content creation. Recently, major efforts by users have been put forward to help streamline the unprecedented amount of information that can be found on Twitter. These efforts have led to the creation of diseasespecific hashtag (#) medical communities and have greatly enhanced the ability to understand and better categorize the available data on Twitter. Specifically, for those involved in rare cancer fields, adhering to organically designed and consistently used hashtags has led to the rapid, reliable dissemination of information and the ability to efficiently discuss and debate topics of interest in the field. For the field of myeloproliferative neoplasms (MPNs), the creation of #MPNSM (myeloproliferative neoplasms on social media) in 2015 has facilitated interactions among healthcare stakeholders from all over the world in the MPN field.Recent findingsIn order to better understand the trends and topics of interest to Twitter users of this novel medical community, we conducted the present analysis which focuses on Twitter analytics from the first two years of #MPNSM.SummaryIn this analysis, we observed a sustained increase in the number of Twitter users, number of tweets, number of impressions, and number of retweets over time, demonstrating the feasibility of creating and maintaining a disease-specific hashtag for a rare cancer over time.

Analysis of First-Year Twitter Metrics of a Rare Disease Community for Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) on Social Media: #BPDCN

Purpose of ReviewThe use of Twitter, one of the most commonly engaged social media platforms in the world, is increasing among the general public. Notably, this trend has also been observed among those involved in the healthcare field. With its ability to readily connect diverse groups of stakeholders in a given area of interest, Twitter has become a focal point for those involved in increasing awareness and information exchange in orphan disease fields. Blastic plasmacytoid dendritic cell neoplasm (BPDCN) is a rare, aggressive hematologic malignancy with generally poor long-term outcomes for adult patients and no standard therapeutic guidelines. Coupled with its low incidence rate, the disease has experienced a number of name changes over the past three decades (e.g., blastic NK cell lymphoma, CD4+CD56+ hematodermic tumor), thereby historically resulting in difficulties in its clinico-pathologic diagnosis and treatment approaches. All of these factors have led to a striking gap in terms of accurate information available to patients and the general public. Therefore, there is an urgent need for the development of more venues for the dissemination of information, particularly online, for this rare cancer.Recent FindingsIn this context, we began the Twitter medical community, #BPDCN, over a year ago, to help fill this information void.SummaryNow, completing its first year of existence, we aimed to analyze the metrics of Twitter use in order to better understand and to describe the characteristics and reach in of #BPDCN, and to determine the feasibility of starting and maintaining a disease-specific hashtag community in a particularly rare cancer.

The Needs of Women Treated for Ovarian Cancer: Results From a #gyncsm Twitter Chat

Purpose Ovarian cancer is the most fatal of all gynecologic cancers, with a high relapse rate regardless of stage. Women treated for ovarian cancer, therefore, likely have supportive care needs that extend well beyond the time frame of first-line therapy. Unfortunately, there is minimal data describing these needs. The purpose of this qualitative study is to understand the supportive care needs of women with ovarian care at the end of treatment. Methods To better understand the issues faced by women with ovarian cancer, we conducted a public Twitter chat in collaboration with gynecologic cancer social media (#gyncsm). Both quantitative and qualitative analyses were performed. Results The chat occurred over a 1-hour time frame on Twitter and resulted in more than 300 unique and original tweets from 43 participants during the chat and an additional 60 unique participants following the chat. Survivors and physicians represented 32% and 11% of participants, respectively; caregivers, advocates, and other clinicians represented the remaining participants. Participants noted deep interest in receiving support during survivorship and dissatisfaction with currently available resources. Sentiment analysis showed that participants viewed the support from social media in a positive light and also revealed negative sentiment around the lack of support from health care providers at the end of treatment. Conclusions Themes derived from the Twitter chat revealed the unique experiences of individuals with ovarian cancer after treatment, including a heightened sense of vulnerability. Understanding these themes represents an opportunity for clinicians to better understand and address the needs of this patient community.

Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) on Social Media: #BPDCN—Increasing Exposure over Two Years Since Inception of a Disease-Specific Twitter Community

Purpose of ReviewEngagement on social media for professional, healthcare-related communication is rapidly rising around the world. We aimed to better understand the dynamics of a rare disease Twitter hashtag community.Recent FindingsTwitter has served as a platform for academic discussion, a method for knowledge dissemination directly from medical meetings, and a venue for patient caregiver and support groups. One example of a rare cancer that has seen an increase in available information via Twitter is blastic plasmacytoid dendritic cell neoplasm, or BPDCN. This field has recently experienced a new wave of interest from various healthcare stakeholders in light of key new scientific breakthroughs and novel clinical trials now starting to be available.SummaryIn order to bring all relevant healthcare stakeholders together, the investigators of this article created a disease-specific Twitter community: #BPDCN = “blastic plasmacytoid dendritic cell neoplasm on social media” which has led to higher levels of engagement and discussion in the field. This article focuses on our analysis of advanced Twitter user-metrics in the second year of #BPDCN and discusses future directions for this rare cancer online disease community.