Jacqueline L. Bender

Seeking Support on Facebook: A Content Analysis of Breast Cancer Groups

Background Social network sites have been growing in popularity across broad segments of Internet users, and are a convenient means to exchange information and support. Research on their use for health-related purposes is limited. Objective This study aimed to characterize the purpose, use, and creators of Facebook groups related to breast cancer. Methods We searched Facebook (www.Facebook.com) using the term breast cancer. We restricted our analysis to groups that were related to breast cancer, operated in English, and were publicly available. Two of us independently extracted information on the administrator and purpose of the group, as well as the number of user-generated contributions. We developed a coding scheme to guide content analysis. Results We found 620 breast cancer groups on Facebook containing a total of 1,090,397 members. The groups were created for fundraising (277/620, 44.7%), awareness (236, 38.1%), product or service promotion related to fundraising or awareness (61, 9%), or patient/caregiver support (46, 7%). The awareness groups as a whole contained by far the most members (n = 957,289). The majority of groups (532, 85.8%) had 25 wall posts or fewer. The support oriented groups, 47% (27/57) of which were established by high school or college students, were associated with the greatest number of user-generated contributions. Conclusions Facebook groups have become a popular tool for awareness-raising, fundraising, and support-seeking related to breast cancer attracting over one million users. Given their popularity and reach, further research is warranted to explore the implications of social network sites as a health resource across various health conditions, cultures, ages, and socioeconomic groups.

A Lot of Action, But Not in the Right Direction: Systematic Review and Content Analysis of Smartphone Applications for the Prevention, Detection, and Management of Cancer

Background Mobile phones have become nearly ubiquitous, offering a promising means to deliver health interventions. However, little is known about smartphone applications (apps) for cancer. Objective The purpose of this study was to characterize the purpose and content of cancer-focused smartphone apps available for use by the general public and the evidence on their utility or effectiveness. Methods We conducted a systematic review of the official application stores for the four major smartphone platforms: iPhone, Android, Nokia, and BlackBerry. Apps were included in the review if they were focused on cancer and available for use by the general public. This was complemented by a systematic review of literature from MEDLINE, Embase, and the Cochrane Library to identify evaluations of cancer-related smartphone apps. Results A total of 295 apps from the smartphone app stores met the inclusion criteria. The majority of apps targeted breast cancer (46.8%, 138/295) or cancer in general (28.5%, 84/295). The reported app purpose was predominantly to raise awareness about cancer (32.2%, 95/295) or to provide educational information about cancer (26.4%, 78/295), followed by apps to support fundraising efforts (12.9%, 38/295), assist in early detection (11.5%, 34/295), promote a charitable organization (10.2%, 30/295), support disease management (3.7%, 11/295), cancer prevention (2.0%, 6/295), or social support (1.0%, 3/295). The majority of the apps did not describe their organizational affiliation (64.1%, 189/295). Apps affiliated with non-profit organizations were more likely to be free of cost (χ2 1=16.3, P<.001) and have a fundraising or awareness purpose (χ2 2=13.3, P=.001). The review of the health literature yielded 594 articles, none of which reported an evaluation of a cancer-focused smartphone application. Conclusions There are hundreds of cancer-focused apps with the potential to enhance efforts to promote behavior change, to monitor a host of symptoms and physiological indicators of disease, and to provide real-time supportive interventions, conveniently and at low cost. However, there is a lack of evidence on their utility, effectiveness, and safety. Future efforts should focus on improving and consolidating the evidence base into a whitelist for public consumption.

Can pain be managed through the Internet? A systematic review of randomized controlled trials.

&NA; Given the increasing penetration and health care related use of the Internet, we examined the evidence on the impact of Internet‐based interventions on pain. A search of Medline, CINAHL, PsycINFO, and the Cochrane Library was conducted for literature published from 1990 to 2010 describing randomized controlled trials that assessed the effects of Internet‐based interventions on patients with pain of any kind. Of 6724 citations, 17 articles were included. The studies evaluated the effects of interventions that provided cognitive and behavioral therapy, moderated peer support programs, or clinical visit preparation or follow‐up support on 2503 people in pain. Six studies (35.3%) received scores associated with high quality. Most cognitive and behavioral therapy studies showed an improvement in pain (n = 7, 77.8%), activity limitation (n = 4, 57.1%) and costs associated with treatment (n = 3, 100%), whereas effects on depression (n = 2, 28.6%) and anxiety (n = 2, 50%) were less consistent. There was limited (n = 2 from same research group) but promising evidence that Internet‐based peer support programs can lead to improvements in pain intensity, activity limitation, health distress and self‐efficacy; limited (n = 4 from same research group) but promising evidence that social networking programs can reduce pain in children and adolescents; and insufficient evidence on Internet‐based clinical support interventions. Internet‐based interventions seem promising for people in pain, but it is still unknown what types of patients benefit most. More well‐designed studies with diverse patient groups, active control conditions, and a better description of withdrawals are needed to strengthen the evidence concerning the impact of Internet‐based interventions on people in pain. This systematic review of Internet‐based treatments for pain indicates that the evidence for such treatment is promising.

Finding a depression app: a review and content analysis of the depression app marketplace.

Background Depression is highly prevalent and causes considerable suffering and disease burden despite the existence of wide-ranging treatment options. Mobile phone apps offer the potential to help close this treatment gap by confronting key barriers to accessing support for depression. Objectives Our goal was to identify and characterize the different types of mobile phone depression apps available in the marketplace. Methods A search for depression apps was conducted on the app stores of the five major mobile phone platforms: Android, iPhone, BlackBerry, Nokia, and Windows. Apps were included if they focused on depression and were available to people who self-identify as having depression. Data were extracted from the app descriptions found in the app stores. Results Of the 1054 apps identified by the search strategy, nearly one-quarter (23.0%, 243/1054) unique depression apps met the inclusion criteria. Over one-quarter (27.7%, 210/758) of the excluded apps failed to mention depression in the title or description. Two-thirds of the apps had as their main purpose providing therapeutic treatment (33.7%, 82/243) or psychoeducation (32.1%, 78/243). The other main purpose categories were medical assessment (16.9%, 41/243), symptom management (8.2%, 20/243), and supportive resources (1.6%, 4/243). A majority of the apps failed to sufficiently describe their organizational affiliation (65.0%, 158/243) and content source (61.7%, 150/243). There was a significant relationship (χ 2 5=50.5, P<.001) between the main purpose of the app and the reporting of content source, with most medical assessment apps reporting their content source (80.5%, 33/41). A fifth of the apps featured an e-book (20.6%, 50/243), audio therapy (16.9%, 41/243), or screening (16.9%, 41/243) function. Most apps had a dynamic user interface (72.4%, 176/243) and used text as the main type of media (51.9%, 126/243), and over a third (14.4%, 35/243) incorporated more than one form of media. Conclusion Without guidance, finding an appropriate depression app may be challenging, as the search results yielded non-depression–specific apps to depression apps at a 3:1 ratio. Inadequate reporting of organization affiliation and content source increases the difficulty of assessing the credibility and reliability of the app. While certification and vetting initiatives are underway, this study demonstrates the need for standardized reporting in app stores to help consumers select appropriate tools, particularly among those classified as medical devices.

Testicular cancer survivors' supportive care needs and use of online support: a cross-sectional survey

IntroductionThe supportive care needs of testicular cancer survivors have not been comprehensively studied. Likewise, there is limited research on their use of the Internet or social media applications—tools that are popular among young adults and which could be used to address their needs.MethodsTwo hundred and four testicular cancer patients receiving care at an urban cancer center completed a questionnaire assessing supportive care needs and the use and preferences for online support. We examined the associations between patient characteristics and met or unmet supportive care needs and the use of testicular cancer online communities.ResultsRespondents had more met (median 8.0, interquartile range (IQR) 10.0) than unmet (median 2.0, IQR 7.0) needs. The majority (62.5%) reported at least one unmet need, most commonly (25%) concerning financial support, body image, stress, being a cancer survivor, and fear of recurrence. Patients who were younger, had nonseminoma testicular cancer, or received treatment beyond surgery had more needs, and those who were unemployed had more unmet needs. The majority of respondents (71.5%) were social media users (e.g., Facebook), and 26% had used a testicular cancer online support community. Reasons for nonuse were lack of awareness (34.3%), interest (30.9%), trust (4.9%), and comfort using computers (2.5%). Users were more likely to speak English as a first language and have more needs.ConclusionsAt least one in four testicular cancer survivors has unmet needs related to financial support, body image, stress, being a cancer survivor, and fear of recurrence. A web-based resource may be a useful strategy to consider given the high prevalence of social media use in this sample and their desire for online support. Efforts are needed to raise awareness about online peer support resources and to overcome barriers to their use.

What is the role of online support from the perspective of facilitators of face-to-face support groups? A multi-method study of the use of breast cancer online communities

OBJECTIVE To explore the role of online communities from the perspective of breast cancer survivors who are facilitators of face-to-face support groups. METHODS Seventy-three attendees (73% response rate) of a Canadian support group-training program completed a questionnaire examining when and why they used online communities. A purposive sample of 12 respondents was interviewed on how they used them in comparison to traditional supportive care. Survey responses were analyzed using descriptive statistics, and interview transcripts using a descriptive interpretive approach. RESULTS Online communities were used by 31.5%, mostly during treatment (73.9%), daily or weekly (91.3%), primarily for information (91.3%) and symptom management (69.6%) and less for emotional support (47.8%). Reasons for non-use were lack of need (48.0%), self-efficacy (30.0%), trust (24.0%), and awareness (20.0%). Respondents used online communities to address unmet needs during periods of stress and uncertainty. A multi-theory framework helps to explain the conditions influencing their use. CONCLUSION Online communities have the potential to fill gaps in supportive care by addressing the unmet needs of a subgroup of breast cancer survivors. Further research is required among typical cancer survivors. PRACTICE IMPLICATIONS Online communities could play an important role as a supplemental resource for a sub-group of breast cancer survivors.

Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment

Background The Internet and social media offer promising ways to improve the reach, efficiency, and effectiveness of recruitment efforts at a reasonable cost, but raise unique ethical dilemmas. We describe how we used social media to recruit cancer patients and family caregivers for a research study, the ethical issues we encountered, and the strategies we developed to address them. Objective Drawing on the principles of Privacy by Design (PbD), a globally recognized standard for privacy protection, we aimed to develop a PbD framework for online health research recruitment. Methods We proposed a focus group study on the dietary behaviors of cancer patients and their families, and the role of Web-based dietary self-management tools. Using an established blog on our hospital website, we proposed publishing a recruitment post and sharing the link on our Twitter and Facebook pages. The Research Ethics Board (REB) raised concern about the privacy risks associated with our recruitment strategy; by clicking on a recruitment post, an individual could inadvertently disclose personal health information to third-party companies engaged in tracking online behavior. The REB asked us to revise our social media recruitment strategy with the following questions in mind: (1) How will you inform users about the potential for privacy breaches and their implications? and (2) How will you protect users from privacy breaches or inadvertently sharing potentially identifying information about themselves? Results Ethical guidelines recommend a proportionate approach to ethics assessment, which advocates for risk mitigation strategies that are proportional to the magnitude and probability of risks. We revised our social media recruitment strategy to inform users about privacy risks and to protect their privacy, while at the same time meeting our recruitment objectives. We provide a critical reflection of the perceived privacy risks associated with our social media recruitment strategy and the appropriateness of the risk mitigation strategies that we employed by assessing their alignment with PbD and by discussing the following: (1) What are the potential risks and who is at risk? (2) Is cancer considered “sensitive” personal information? (3) What is the probability of online disclosure of a cancer diagnosis in everyday life? and (4) What are the public’s expectations for privacy online and their views about online tracking, profiling, and targeting? We conclude with a PbD framework for online health research recruitment. Conclusions Researchers, REBs, ethicists, students, and potential study participants are often unaware of the privacy risks of social media research recruitment and there is no official guidance. Our PbD framework for online health research recruitment is a resource for these wide audiences.

Questioning context: a set of interdisciplinary questions for investigating contextual factors affecting health decision making

Objective  To combine insights from multiple disciplines into a set of questions that can be used to investigate contextual factors affecting health decision making.

Web-Based Tools for Text-Based Patient-Provider Communication in Chronic Conditions: Scoping Review

Background Patients with chronic conditions require ongoing care which not only necessitates support from health care providers outside appointments but also self-management. Web-based tools for text-based patient-provider communication, such as secure messaging, allow for sharing of contextual information and personal narrative in a simple accessible medium, empowering patients and enabling their providers to address emerging care needs. Objective The objectives of this study were to (1) conduct a systematic search of the published literature and the Internet for Web-based tools for text-based communication between patients and providers; (2) map tool characteristics, their intended use, contexts in which they were used, and by whom; (3) describe the nature of their evaluation; and (4) understand the terminology used to describe the tools. Methods We conducted a scoping review using the MEDLINE (Medical Literature Analysis and Retrieval System Online) and EMBASE (Excerpta Medica Database) databases. We summarized information on the characteristics of the tools (structure, functions, and communication paradigm), intended use, context and users, evaluation (study design and outcomes), and terminology. We performed a parallel search of the Internet to compare with tools identified in the published literature. Results We identified 54 papers describing 47 unique tools from 13 countries studied in the context of 68 chronic health conditions. The majority of tools (77%, 36/47) had functions in addition to communication (eg, viewable care plan, symptom diary, or tracker). Eight tools (17%, 8/47) were described as allowing patients to communicate with the team or multiple health care providers. Most of the tools were intended to support communication regarding symptom reporting (49%, 23/47), and lifestyle or behavior modification (36%, 17/47). The type of health care providers who used tools to communicate with patients were predominantly allied health professionals of various disciplines (30%, 14/47), nurses (23%, 11/47), and physicians (19%, 9/47), among others. Over half (52%, 25/48) of the tools were evaluated in randomized controlled trials, and 23 tools (48%, 23/48) were evaluated in nonrandomized studies. Terminology of tools varied by intervention type and functionality and did not consistently reflect a theme of communication. The majority of tools found in the Internet search were patient portals from 6 developers; none were found among published articles. Conclusions Web-based tools for text-based patient-provider communication were identified from a wide variety of clinical contexts and with varied functionality. Tools were most prevalent in contexts where intended use was self-management. Few tools for team-based communication were found, but this may become increasingly important as chronic disease care becomes more interdisciplinary.

A Call to Arms: moving forward from “Fostering the Partnership” Canadian GU Cancers Survivorship Conference 2011

Fostering the Partnership was a unique and innovative forum for genitourinary (GU) cancer survivors, advocacy groups and health care professionals (HCPs) to explore ways to collaboratively enhance GU cancer survivorship. The idea evolved from the growing recognition that new models of care are required to: (a) meet the diverse needs of an increasingly active and informed patient population; (b) respond to the desire of cancer survivors to give back; and (c) leverage their growing skill set as expert patients and potential research collaborators. The event, endorsed by the Canadian Urological Association, the Canadian Uro-Oncology Group and the Urology Nurses of Canada, and supported by industry partners, was held on January 19–20, 2011 in King City, Ontario. Forty-three individuals attended: 18 cancer survivors/caregivers, 22 HCPs and 3 researchers representing bladder, kidney, prostate and testicular cancers, clinical subspecialties and GU patient advocacy groups, including Bladder Cancer Canada, Kidney Cancer Canada, Prostate Cancer Canada and the Canadian Testicular Cancer Association. The event was an overwhelming success. Evaluations showed that 99% of attendees were extremely pleased with the event and would like to hold another. The following were identified as priorities. Meeting participants would like the Canadian GU community to recognize them as important future initiatives. Review current strategies and best practices that foster partnerships between cancer survivors and HCPs. Assess the knowledge of HCPs regarding the needs of GU cancer survivors, existing advocacy groups/community support organizations and their services, as well as barriers and facilitators for promoting active partnerships with cancer survivors. Establish priorities for GU cancer survivorship research with collaborative input from and participation by GU cancer survivors and HCPs. Facilitate direct communication, knowledge exchange and collaboration between GU cancer survivor advocacy groups and the HCPs. Facilitate networking, collaborative programming and fundraising among GU cancer survivor advocacy groups. Define the ideal patient journey for each GU cancer type, identify gaps in current services, and disseminate tools (e.g., Survivorship Care Plan/ Passport to Health) to facilitate improvement in these areas. Synthesize up-to-date information about GU cancer survivor advocacy groups/community support organizations and their services in an easy-to-access, web-based format for HCPs and cancer survivors. Facilitate ongoing opportunities for peer-to-peer support, community building and networking among GU cancer survivors throughout the cancer journey. Hold a follow-up conference led collaboratively by GU cancer survivors and HCPs based on the recommendations of this report. This is our “Call to Arms” to you, our colleagues. It is time to embrace survivorship in our practices and address these priorities. A complete description of the event, its recommendations and strategies to accomplish them is forthcoming.