Social Networking Site Usage among Childhood Cancer Survivors—A Potential Tool for Research Recruitment?

Seltzer, Erica D.; Stolley, Melinda R.; Mensah, Edward; Sharp, Lisa K.

doi:10.1007/s11764-014-0348-4

Cited by 19 publications

(15 citation statements)

References 12 publications

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“…Compared to other research where online recruitment is common, the cancer survivor population is older [16]; however, social media use is increasing in older populations [17] and 71% of the year age group in the UK now own a smartphone [18]. In one acceptability study, 79% of childhood cancer survivors (18-48 years of age) reported positive attitudes towards the use of social media in research study recruitment, with 80% reporting at least weekly use of social media [19]. As cultures become increasingly digital, these methods of recruitment become more possible in cancer survivorship research.…”

Section: Is Online Recruitment a Potential Solution?mentioning

confidence: 99%

Recruiting cancer survivors into research studies using online methods: a secondary analysis from an international cancer survivorship cohort study

Hulbert‐Williams¹,

Pendrous²,

Hulbert-Williams³

et al. 2019

ecancer

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Recruiting participants into cancer survivorship research remains a significant challenge. Few studies have tested and compared the relative use of non-clinical online recruitment methods, especially in samples of adult cancer survivors. This paper reports on the feasibility of recruiting a representative cohort of cancer survivors using online social media. Two hundred participants with cancer diagnosis within the past 12 months were recruited via social media (Facebook, Twitter and Reddit) into a longitudinal questionnaire study. Different methods of online recruitment proved to be more effective than others over time. Paid Facebook boosting, Reddit posts and Twitter advertisements placed by existing cancer charities proved most helpful in reaching our recruitment target (contributing 27%, 22% and 32%, respectively). Recruiting online achieved a more demographically and clinically representative sample for our study: our subject was younger, less heteronormative, including those with a range of clinical diagnoses, primary and recurrence illness, and patients who had both completed and were still receiving treatment. This was certainly not a quick method of sample recruitment but that could have been optimised by focussing only on the three most effective methods described earlier. While we found that online recruitment is significantly lower in cost than traditional recruitment methods, and can reduce some biases, there still remains the potential for some biases (e.g. excluding much older participants) and ethical/methodological issues (e.g. excluding those without access to Internet). We outline our recruitment strategy, retention rates and a cost breakdown in order to guide other researchers considering such methods for future research in cancer survivorship.

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Section: Is Online Recruitment a Potential Solution?mentioning

confidence: 99%

Recruiting cancer survivors into research studies using online methods: a secondary analysis from an international cancer survivorship cohort study

Hulbert‐Williams¹,

Pendrous²,

Hulbert-Williams³

et al. 2019

ecancer

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“…Despite the high use of social media, the amount of information available on niche topics and the usage of social media by patients and consumers for retrieving medical information is limited [23].…”

Section: Network Characteristicsmentioning

confidence: 99%

Social Media Usage for Patients and Healthcare Consumers: A Literature Review

2017

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Abstract:The evolution of Internet from static Web "publishing" to the highly participative, and data-driven, innovations of Web 2.0 has been influencing how people search for health-related information. This review included studies indexed in the PubMed electronic database that focused on social media analysis, examining relationships between participants (patients and healthcare consumers) through social media usage. The obtained results showed that previous research regarding social media's impact on patients and healthcare consumers aimed at a combination of platforms, but there is a penury of information about niche topics or its usage for retrieving medical information. Nevertheless, social media proved to be to be a promising tool in research mainly for recruitment purposes. The review has outlined that eHealth literacy is an attribute for populations that are female and relatively young and educated. Blogs share personal experiences, YouTube contains unregulated, high-and low-quality information that can mislead individuals, Facebook contains more marketing than health-related information, while Wikipedia is recommended for providing high-quality information. Despite healthcare practitioners' and healthcare public institutions' reluctance about the use of social media, this review demonstrates the usefulness of social media for patients and healthcare consumers in retrieving health-related information based on content availability and usage implications, and highlights gaps in knowledge that further research needs to fill.

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“…Illustrative examples include the role of patients with gastrointestinal stromal tumor (GIST) or chronic myeloid leukemia (CML) in the development and application of therapies targeting the KIT and Bcr-Abl oncoproteins (see Box 1). New social media platforms, such as Facebook and Twitter, now enable such virtual patient aggregation on an even larger scale (Seltzer et al, 2014; Katz et al, 2016). For example, Facebook groups exist for the majority of rare cancer types, and these groups may currently include over 1,000 members (Figure 2).…”

Section: Overcoming Biospecimen Scarcity Via Online Platformsmentioning

confidence: 99%

Emerging Opportunities for Target Discovery in Rare Cancers

Sharifnia

Hong

Painter

et al. 2017

Cell Chemical Biology

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Rare cancers pose unique challenges to research due to their low incidence. Barriers include a scarcity of tissue and experimental models to enable basic research and insufficient patient accrual for clinical studies. Consequently, an understanding of the genetic and cellular features of many rare cancer types and their associated vulnerabilities has been lacking. However, new opportunities are emerging to facilitate discovery of therapeutic targets in rare cancers. Online platforms are allowing patients with rare cancers to organize on an unprecedented scale, tumor genome sequencing is now routinely performed in research and clinical settings, and the efficiency of patient-derived model generation has improved. New CRISPR/Cas9 and small-molecule libraries permit cancer dependency discovery in a rapid and systematic fashion. In parallel, large-scale studies of common cancers now provide reference datasets to help interpret rare cancer profiling data. Together, these advances motivate consideration of new research frameworks to accelerate rare cancer target discovery.

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Social Networking Site Usage among Childhood Cancer Survivors—A Potential Tool for Research Recruitment?

Cited by 19 publications

References 12 publications

Recruiting cancer survivors into research studies using online methods: a secondary analysis from an international cancer survivorship cohort study

Recruiting cancer survivors into research studies using online methods: a secondary analysis from an international cancer survivorship cohort study

Social Media Usage for Patients and Healthcare Consumers: A Literature Review

Emerging Opportunities for Target Discovery in Rare Cancers

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