A History of #BCSM and Insights for Patient-Centered Online Interaction and Engagement.

Purpose: Participation in cancer support groups can provide a sense of community and may better prepare patients for interactions with their health care team. Online interactions may overcome some barriers to in-person support group participation. #BCSM (breast cancer social media), the first cancer support community established on Twitter, was founded in 2011 by two breast cancer survivors.

Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities.

Twitter use has increased among patients with cancer, advocates, and oncology professionals. Hashtags, a form of metadata, can be used to share content, organize health information, and create virtual communities of interest. Cancer-specific hashtags modeled on a breast cancer community, #bcsm, led to the development of a structured set of hashtags called the cancer tag ontology.

Transforming research: engaging patient advocates at all stages of cancer research.

In recent years there has been a push to include patients and advocates in clinical research, including in clinical trial design and approval processes. Additionally, increased advocate-driven research funding has led to seats for advocates in the funding review process. However, despite advances that include having patients and advocates involved in clinical research projects that may directly, or eventually, affect their care and treatment, we have much further to go to make this a truly inclusionary participation in research.

Patient Participation at Health Care Conferences: Engaged Patients Increase Information Flow, Expand Propagation, and Deepen Engagement in the Conversation of Tweets Compared to Physicians or Researchers.

Background: Health care conferences present a unique opportunity to network, spark innovation, and disseminate novel information to a large audience, but the dissemination of information typically stays within very specific networks. Social network analysis can be adopted to understand the flow of information between virtual social communities and the role of patients within the network.

Objective: The purpose of this study is to examine the impact engaged patients bring to health care conference social media information flow and how they expand dissemination and distribution of tweets compared to other health care conference stakeholders such as physicians and researchers.

What Do Patients Prefer? Understanding Patient Perspectives on Receiving a New Breast Cancer Diagnosis.

Background And Objective: There is variability in physician practice regarding delivery method and timeliness of test results to cancer patients. Our aim was to survey patients to determine if there was a difference between actual and preferred care for disclosure of test results.

Methods: A de-identified survey was distributed to online cancer support groups to query patients about their experience regarding communication of cancer testing and timeliness.

Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey.

Background: Despite reported benefits, many women do not attend breast cancer support groups. Abundant online resources for support exist, but information regarding the effectiveness of participation is lacking. We report the results of a Twitter breast cancer support community participant survey.