Mark Merolli

Health outcomes and related effects of using social media in chronic disease management

Whilst the future for social media in chronic disease management appears to be optimistic, there is limited concrete evidence indicating whether and how social media use significantly improves patient outcomes. This review examines the health outcomes and related effects of using social media, while also exploring the unique affordances underpinning these effects. Few studies have investigated social medias potential in chronic disease, but those we found indicate impact on health status and other effects are positive, with none indicating adverse events. Benefits have been reported for psychosocial management via the ability to foster support and share information; however, there is less evidence of benefits for physical condition management. We found that studies covered a very limited range of social media platforms and that there is an ongoing propensity towards reporting investigations of earlier social platforms, such as online support groups (OSG), discussion forums and message boards. Finally, it is hypothesized that for social media to form a more meaningful part of effective chronic disease management, interventions need to be tailored to the individualized needs of sufferers. The particular affordances of social media that appear salient in this regard from analysis of the literature include: identity, flexibility, structure, narration and adaptation. This review suggests further research of high methodological quality is required to investigate the affordances of social media and how these can best serve chronic disease sufferers. Evidence-based practice (EBP) using social media may then be considered.

Methodological ReviewHealth outcomes and related effects of using social media in chronic disease management: A literature review and analysis of affordances☆

Whilst the future for social media in chronic disease management appears to be optimistic, there is limited concrete evidence indicating whether and how social media use significantly improves patient outcomes. This review examines the health outcomes and related effects of using social media, while also exploring the unique affordances underpinning these effects. Few studies have investigated social medias potential in chronic disease, but those we found indicate impact on health status and other effects are positive, with none indicating adverse events. Benefits have been reported for psychosocial management via the ability to foster support and share information; however, there is less evidence of benefits for physical condition management. We found that studies covered a very limited range of social media platforms and that there is an ongoing propensity towards reporting investigations of earlier social platforms, such as online support groups (OSG), discussion forums and message boards. Finally, it is hypothesized that for social media to form a more meaningful part of effective chronic disease management, interventions need to be tailored to the individualized needs of sufferers. The particular affordances of social media that appear salient in this regard from analysis of the literature include: identity, flexibility, structure, narration and adaptation. This review suggests further research of high methodological quality is required to investigate the affordances of social media and how these can best serve chronic disease sufferers. Evidence-based practice (EBP) using social media may then be considered.

A systematic review of types and efficacy of online interventions for cancer patients.

OBJECTIVE This review examines the evidence-based literature surrounding the use of online resources for adult cancer patients. The focus is online resources that connect patients with their healthcare clinician and with supportive and educational resources, their efficacy and the outcome measures used to assess them. METHODS The following databases were systematically searched for relevant literature: MEDLINE, PsychINFO, Cochrane Central Register of Controlled Trials, CINAHL, Inspec and Computers and Applied Science. Included were studies conducted in an outpatient setting, and reporting a measurable, clinically relevant outcome. Fourteen studies satisfied the inclusion criteria. RESULTS The efficacy of online interventions was varied, with some demonstrating positive effects on quality of life and related measures, and two demonstrating poorer outcomes for intervention participants. The majority of interventions reported mixed results. Included interventions were too heterogeneous for meta-analysis. CONCLUSIONS The overall benefit of online interventions for cancer patients is unclear. Although there is a plethora of interventions reported without analysis, current interventions demonstrate mixed efficacy of limited duration when rigorously evaluated. PRACTICE IMPLICATIONS The efficacy of on-line interventions for cancer patients is unclear. All on-line interventions should be developed using the available evidence-base and rigorously evaluated to expand our understanding of this area.

Ethical Issues of Social Media Usage in Healthcare

OBJECTIVE Social media, web and mobile technologies are increasingly used in healthcare and directly support patientcentered care. Patients benefit from disease self-management tools, contact to others, and closer monitoring. Researchers study drug efficiency, or recruit patients for clinical studies via these technologies. However, low communication barriers in socialmedia, limited privacy and security issues lead to problems from an ethical perspective. This paper summarizes the ethical issues to be considered when social media is exploited in healthcare contexts. METHODS Starting from our experiences in social-media research, we collected ethical issues for selected social-media use cases in the context of patient-centered care. Results were enriched by collecting and analyzing relevant literature and were discussed and interpreted by members of the IMIA Social Media Working Group. RESULTS Most relevant issues in social-media applications are confidence and privacy that need to be carefully preserved. The patient-physician relationship can suffer from the new information gain on both sides since private information of both healthcare provider and consumer may be accessible through the Internet. Physicians need to ensure they keep the borders between private and professional intact. Beyond, preserving patient anonymity when citing Internet content is crucial for research studies. CONCLUSION Exploiting medical social-media in healthcare applications requires a careful reflection of roles and responsibilities. Availability of data and information can be useful in many settings, but the abuse of data needs to be prevented. Preserving privacy and confidentiality of online users is a main issue, as well as providing means for patients or Internet users to express concerns on data usage.

Patient-Reported Outcomes and Therapeutic Affordances of Social Media: Findings From a Global Online Survey of People With Chronic Pain

Background Patient-reported outcomes (PROs) from social media use in chronic disease management continue to emerge. While many published articles suggest the potential for social media is positive, there is a lack of robust examination into mediating mechanisms that might help explain social media’s therapeutic value. This study presents findings from a global online survey of people with chronic pain (PWCP) to better understand how they use social media as part of self-management. Objective Our aim is to improve understanding of the various health outcomes reported by PWCP by paying close attention to therapeutic affordances of social media. We wish to examine if demographics of participants underpin health outcomes and whether the concept of therapeutic affordances explains links between social media use and PROs. The goal is for this to help tailor future recommendations for use of social media to meet individuals’ health needs and improve clinical practice of social media use. Methods A total of 231 PWCP took part in a global online survey investigating PROs from social media use. Recruited through various chronic disease entities and social networks, participants provided information on demographics, health/pain status, social media use, therapeutic affordances, and PROs from use. Quantitative analysis was performed on the data using descriptive statistics, cross-tabulation, and cluster analysis. Results The total dataset represented 218 completed surveys. The majority of participants were university educated (67.0%, 146/218) and female (83.9%, 183/218). More than half (58.7%, 128/218) were married/partnered and not working for pay (75.9%, 88/116 of these due to ill health). Fibromyalgia (46.6%, 55/118) and arthritis (27.1%, 32/118) were the most commonly reported conditions causing pain. Participants showed a clear affinity for social network site use (90.0%, 189/210), followed by discussion forums and blogs. PROs were consistent, suggesting that social media positively impact psychological, social, and cognitive health. Analysis also highlighted two strong correlations linking platform used and health outcomes (particularly psychological, social, and cognitive) to (1) the narrative affordance of social media and (2) frequency of use of the platforms. Conclusions Results did not uncover definitive demographics or characteristics of PWCP for which health outcomes are impacted. However, findings corroborate literature within this domain suggesting that there is a typical profile of people who use social media for health and that social media are more suited to particular health outcomes. Exploration of the relationship between social media’s therapeutic affordances and health outcomes, in particular the narration affordance, warrants further attention by patients and clinicians.

Developing a Framework to Generate Evidence of Health Outcomes From Social Media Use in Chronic Disease Management

Background While there is an abundance of evidence-based practice (EBP) recommendations guiding management of various chronic diseases, evidence suggesting best practice for using social media to improve health outcomes is inadequate. The variety of social media platforms, multiple potential uses, inconsistent definitions, and paucity of rigorous studies, make it difficult to measure health outcomes reliably in chronic disease management. Most published investigations report on an earlier generation of online tools, which are not as user-centered, participatory, engaging, or collaborative, and thus may work differently for health self-management. Objective The challenge to establish a sound evidence base for social media use in chronic disease starts with the need to define criteria and methods to generate and evaluate evidence. The authors’ key objective is to develop a framework for research and practice that addresses this challenge. Methods This paper forms part of a larger research project that presents a conceptual framework of how evidence of health outcomes can be generated from social media use, allowing social media to be utilized in chronic disease management more effectively. Using mixed methods incorporating a qualitative literature review, a survey and a pilot intervention, the research closely examines the therapeutic affordances of social media, people with chronic pain (PWCP) as a subset of chronic disease management, valid outcome measurement of patient-reported (health) outcomes (PRO), the individual needs of people living with chronic disease, and finally translation of the combined results to improve evidence-based decision making about social media use in this context. Results Extensive review highlights various affordances of social media that may prove valuable to understanding social media’s effect on individual health outcomes. However, without standardized PRO instruments, we are unable to definitively investigate these effects. The proposed framework that we offer outlines how therapeutic affordances of social media coupled with valid and reliable PRO measurement may be used to generate evidence of improvements in health outcomes, as well as guide evidence-based decision making in the future about social media use as part of chronic disease self-management. Conclusions The results will (1) inform a framework for conducting research into health outcomes from social media use in chronic disease, as well as support translating the findings into evidence of improved health outcomes, and (2) inform a set of recommendations for evidence-based decision making about social media use as part of chronic disease self-management. These outcomes will fill a gap in the knowledge and resources available to individuals managing a chronic disease, their clinicians and other researchers in chronic disease and the field of medicine 2.0.

The Unintended Consequences of Social Media in Healthcare: New Problems and New Solutions.

OBJECTIVES Social media is increasingly being used in conjunction with health information technology (health IT). The objective of this paper is to identify some of the undesirable outcomes that arise from this integration and to suggest solutions to these problems. METHODOLOGY After a discussion with experts to elicit the topics that should be included in the survey, we performed a narrative review based on recent literature and interviewed multidisciplinary experts from different areas. In each case, we identified and analyzed the unintended effects of social media in health IT. RESULTS Each analyzed topic provided a different set of unintended consequences. Most relevant consequences include lack of privacy with ethical and legal issues, patient confusion in disease management, poor information accuracy in crowdsourcing, unclear responsibilities, misleading and biased information in the prevention and detection of epidemics, and demotivation in gamified health solutions with social components. CONCLUSIONS Using social media in healthcare offers several benefits, but it is not exempt of potential problems, and not all of these problems have clear solutions. We recommend careful design of digital systems in order to minimize patients feelings of demotivation and frustration and we recommend following specific guidelines that should be created by all stakeholders in the healthcare ecosystem.

Global communication practices of physiotherapists on Twitter

Abstract Background: Social media have offered professional communities the opportunity to be digitally connected. The hashtag #GlobalPT was conceived and promoted from 2015 and has acted as a slogan for the globally connected physiotherapy community. This study explores the global reach and dominant communication themes that emerged during a set time frame that represented the single largest period of #GlobalPT activity. Method: Using purposive sampling, 988 publically available tweets including the hashtag #GlobalPT were studied. Descriptive statistical analysis was conducted to quantify tweet data and qualitative, inductive phenomenological thematic content analysis to describe latent themes within the tweets. Results: #GlobalPT activity was noted across 24 countries (UK top represented) and four languages (929/988, 94.03% in English). Europe was the most active area (738/988, 74.70%), followed by Oceania (120/988, 12.15%). Thematic content analysis identified eight themes within the communication practices of the physiotherapy community on Twitter. The three major themes were: sharing information (108/377, 28.65%), promotional activity (93/377, 24.67%) and positive feedback (69/377, 18.30%). Conclusion: The professional communication practices of physiotherapists on Twitter show a global spread of communication. The themes provide preliminary evidence for social media’s unique potential to assist the World Confederation for Physical Therapy strategic vision.

Using Social Media While Waiting in Pain: A Clinical 12-Week Longitudinal Pilot Study

Background Chronic pain places an enormous burden on health care systems. Multidisciplinary pain management services are well documented as an effective means to improve patient outcomes. However, waiting lists to access these services are long and outcomes deteriorate. Innovative solutions such as social media are gaining attention as a way to decrease this burden and improve outcomes. It is a challenge to design research that demonstrates whether social media are acceptable to patients and clinically effective. Objective The aim was to conduct a longitudinal pilot study to understand what aspects of research design are key to the success of running a larger-scale study of social media use in the clinical management of chronic pain. Methods A 12-week study examined social media use by patients on the waiting list for the Royal Melbourne Hospital Pain Management Service. Selected social media resources were suggested for use by patients waiting for an appointment at the clinic. Patients filled out measures for pain interference and pain self-efficacy before and after the study. Follow-up was conducted at monthly intervals via telephone semistructured interviews to discuss engagement and garner individual perceptions towards social media use. A social media-use instrument was also administered as part of the after-study questionnaire. Results Targeted recruitment refined 235 patient referrals to 138 (58.7%) suitable potential participants. Contact was made with 84 out of 138 (60.9%) patients. After a further exclusion of 54 out of 84 (64%) patients for various reasons, this left 30 out of 84 (36%) patients fitting the inclusion criteria and interested in study participation. A final study cohort of 17 out of 30 (57%) was obtained. Demographics of the 17 patients were mixed. Low back pain was the primary condition reported as leading to chronic pain. Semistructured interviews collected data from 16 out of 17 (94%) patients who started the trial, and at final follow-up 9 out of 17 (53%) patients completed questionnaires. Low specificity of the resources to one’s condition and time poorness may have been barriers to engagement. Conclusions Results suggest that with refinements, this study design can be implemented successfully when conducting a larger social media study. At present, comment cannot be made on what effect using social media can have on patients on hospital waiting lists, nor whether those who use social media while waiting in pain achieve better outcomes from eventual participation in a chronic pain program. Long-term follow-up should be included in future studies to answer this. Future research should focus on multicenter randomized controlled trials, involving patients in the intervention design for improved participation and outcomes and for evidence to be sound.

Patient Empowerment Through Social Media

Abstract Patient empowerment is a healthcare model centered around patients developing the capacity to take responsibility for their own health. This approach is most usually linked to people living with long-term conditions (LTCs). This chapter discusses development in this approach including the therapeutic affordances of social media in LTC management, how it has been used to support an acute condition—sports concussion, and the emerging peer-to-peer healthcare approach. It concludes by discussing that new social media platforms will bring new functionality. It stresses the importance of both healthcare professionals and healthcare innovators understanding how patients are using these platforms, and for them to work together with patients to harness their power to improve quality of life through assisting the recovery from short-term conditions and supporting the management of long-term conditions