Using social media in supportive and palliative care research: Table 1

Abstract

Difficulties relating to supportive and palliative care research are often reported. However, studies have highlighted that people near the end of life are happy to participate in research and want their voices heard. Thus, one may raise a twofold question: are we limiting the free will of people who are seriously ill? And are we missing important data, which probably cannot be obtained from other sources? In light of this landscape, a new opportunity has emerged: the use of social media (SM). This paper provides a comprehensive summary of SM, including its theoretical underpinnings, and recent examples of successful uses of SM in healthcare research. It also outlines the opportunities (wider reach, direct access, the potential of Big Data, readiness of research data, empowered participants) and challenges (anonymity of participants, digital divide, sample bias, screening and 'saying no' to participants, data analysis) of using SM in end-of-life care research. Finally, it describes the practical steps that a researcher could follow to recruit patients using SM. Implications for palliative care clinicians, researchers and policymakers are also discussed, with a focus on the need to facilitate patient-centred care through the use of SM. The need for relevant and updated guidelines in this new, emerging field is highlighted.

Big Data and discrimination: perils, promises and solutions. A systematic review

“…Finally, a few studies highlighted that Big Data technologies may tackle discrimination and promote equality in various sectors, such as healthcare and urban development [6,18,47]. Such interventions, however, might have the opposite effect and create other types of social disparities by widening the divide between people who have access to digital resources and those who do not, on the basis of income, ethnicity, age, skills, and geographical location.…”

“…Lack of resources or computational skills, older age, geographical location, and low income were identified as. possible causes of this digital divide [8,18,60]. Two papers [49,74] discussed the "big data exclusions" referring to those individuals "whose information is not regularly collected or analyzed because they do not routinely engage in data-generating practices" [49].…”

“…Finally, two papers also discussed the positive influence of social media [59] analyzed how text mining could be used to assess the level and diffusion of discrimination related to people affected by Human Immunodeficiency Virus Infection (HIV) and Acquired Immune Deficiency Syndrome (AIDS) in popular social media like Facebook and at the same time implement awareness-raising campaigns to spread tolerance. Another article [18] claims that social media could be used to enhance the participation of people receiving pediatric palliative care, a particularly vulnerable group, in research.…”

Digital conversations about suicide among teenagers and adults with epilepsy: A big‐data, machine learning analysis

“…Social media presents a novel opportunity for engagement and interaction in a virtual environment. There are many recent examples of successful uses of social media in healthcare research 10–13 . Some studies have explored the use of social media by PWE to understand and explore their experiences and concerns 14 .…”

Palliative care research centre's move into social media: constructing a framework for ethical research, a consensus paper

“…The online world is alive with the topics of illness, dying and death1 2 and for a palliative care research centre this wealth of communication has implications for research practices. In a recent paper ‘Using social media in supportive and palliative care research’,3 its authors present a detailed overview of how social media (SM) have evolved as a tool for research within the field of palliative care, but stops short of making any recommendations with regard to ethical and moral stances. It concludes with a call for ethical guidelines to be constructed for the use of SM.…”