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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.
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.
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.
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.
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.
Reports of health outcomes from social media use in chronic disease management continue to emerge in academic literature. This paper presents findings from a global online survey that examined patient-reported outcomes (PROs) by people with chronic pain (PWCP) who use social media as part of their self-management. Previous articles report a positive outlook for the therapeutic potential of social media [
Our study draws from the behavioral psychology theory of “affordances” to explain this. Affordances refer to individual behaviors based on the relationship that exists between the individual and their environment [
Earlier work provided scope for this study through an extensive literature review and development of a research framework, within which our concept of therapeutic affordances is elaborated [
The aim of the survey was to better understand use of social media for self-management and what underlying therapeutic uses participants perceive to be most relevant to health outcomes. This therapeutic affordances perspective aims to advance research in the field of social media in health. It may prove useful to guide a more sophisticated approach to social media, tailored to the characteristics and preferences of different groups of patients, leading to better overall health outcomes in the management of chronic disease. We hypothesize that (1) health outcomes from social media use will vary according to demographic and health profiles of individuals, and (2) health outcomes from social media use will vary according to therapeutic affordances underlying use and platforms used.
This paper presents findings from analysis of quantitative data collected from a global online survey of PWCP, investigating PROs from social media use to manage chronic pain. It follows approaches to developing and evaluating conceptual models in health [
The survey was conducted using SurveyMonkey. It was a self-administered questionnaire of 240 questions, asking participants to provide quantitative and qualitative data about a variety of areas: demographics, health/pain status, social media use, therapeutic affordances, and PROs from use (
A survey design expert from the Statistical Consulting Centre at the University of Melbourne was consulted regarding sample size, survey length, questions, potential bias, and recruitment [
Adults (18 or older), with chronic pain (3 months or greater) who used social media as part of self-management were invited to participate via social media channels. Google search was performed periodically from March 1 to May 20, 2013, to identify potential recruitment channels. Terms such as “online health networks”, “online pain support communities”, “chronic disease organizations”, “chronic pain organizations”, and “international pain organizations” were used. Searching was limited to English language. We also included common social networks and targeted active chronic pain groups such as those on Facebook, Twitter, Daily Strength, and PatientsLikeMe. Other influencers were contacted (at the support group/organizational level and individual level based on word of mouth).
Each identified organization or group moderator was emailed for assistance. We made it clear that the survey was focusing on “pain interference” as a result of living with the condition in question. Each email contained a link to the survey, where the plain language statement and informed consent information could also be viewed. This allowed moderators to review the suitability of the study to their members. A recruitment video was also created by the study’s primary investigator to complement the email, and the link was pasted into the email text [
The first domain asked participants about general demographic information (eg, gender, age, education, employment). These questions were taken from the World Health Organization’s World Health Survey [
Participants were asked questions about their health and chronic pain. Examples were “Do you suffer from chronic pain (pain over 3 month’s duration)?” (with 3 months selected in line with definitions of chronic pain provided in [
Given the focus on chronic pain, the outcome measure we chose to examine health-related quality of life (HRQL) was the Patient Reported Outcomes Measurement Information System (PROMIS) “Pain Interference” item bank (PROMIS-PI). Unlike commonly used legacy measures, it demonstrates good reliability and validity across a range of chronic diseases, including chronic pain conditions, and shows moderate to strong correlations with other common outcome measures [
This was the most comprehensive section of the survey. Participants were asked specifically about their use of social media in chronic pain self-management. For example, “In the last year, have you used social network sites when you go online for information, communication, or interaction about your chronic pain?”. The statements that followed asked participants to provide details of the types of social media they used to manage their chronic pain, the activities they performed, perception of various therapeutic affordances, and whether they felt use of the platform had positively impacted various PROs. For example, “Do you feel that your use of social network sites has in any way helped your…?”. Questions about therapeutic affordances were phrased to elicit perceptions about different underlying uses. They were designed to better understand the degree to which the therapeutic affordances are present and relate to PROs. Five therapeutic affordances of social media, qualitatively extracted from published literature review [
The same line of questioning was used for each platform, with participants requested to answer questions only for the platforms they used as part of self-management.
The data were analyzed using statistical software package SPSS. Data analysis methods included descriptive statistical analysis, frequency counts, as well as cross-tabulation to examine any statistical associations between variables (either using Pearson’s chi-square or the gamma statistic for ordinal-by-ordinal or ordinal-by-binary computations).
Data from social media platforms with less than 20 responses were excluded from any further analysis, due to low cell counts leading to poor statistics. Hence, no detailed statistical analyses are presented for photo sharing sites, tagging/aggregation sites, chat rooms, and virtual worlds.
To compare the interactions between all three variables (platform, outcome, and therapeutic affordance components), we ran a cluster analysis using Cluster 3.0 [
To represent the relationships between demographic characteristics and platform-outcomes, we applied a hierarchical clustering method on the transformed data from the combination of the three most used platforms and the two most reported positive health outcome domains with demographic characteristics. We used a similar approach to visualize associations among the individual components of each therapeutic affordance and platform-outcome data.
Data for this study were obtained from 231 individuals, providing a diverse and global dataset. More than half of participants were from Australia (55.4%, 128/231), followed by the United States of America (17.7%, 41/231) and United Kingdom (10.0%, 23/231). Other countries were represented in smaller numbers: Canada, Spain, New Zealand, Ireland, South Africa, China, Kenya, Pakistan, Burma, and Taiwan. Only 24.7% (57/231) of participants reported where and how they were made aware of the survey, with 6.5% (15/231) indicating through Chronic Pain Australia.
Participant demographics are presented in
In regards to health status, 88.8% (190/214) reported a formal diagnosis of chronic pain by a health professional. We sought to examine what condition caused pain in each case; 77.1% (165/214) reporting being formally diagnosed with a chronic disease as the root of their pain. Of these, 55.1% (118/214) provided further details. Most reported was fibromyalgia (46.6%, 55/118), then rheumatoid arthritis (16.9%, 20/118), osteoarthritis (10.2%, 12/118), complex-regional pain syndrome (10.2%, 12/118), back pain (7.6%, 9/118), and diabetes (4.2%, 5/118). The remainder included various chronic diseases (ie, chronic fatigue syndrome, multiple sclerosis, and endometriosis). Participants reported various offline methods (in the last 12 months) for pain management. Most took medication (85.9%, 177/206) and saw a doctor (81.1%, 167/206) as primary management, with physical therapy/physiotherapy as the third most common method (59.5%, 102/206). Other responses supplied as free text included, but were not limited to, acupuncture and eastern medicines, other physical therapies (eg, remedial massage, chiropractic), exercise, surgery, injections/nerve blocks, and other self-management strategies (eg, cognitive behavioral therapy).
Participant demographics (N=218).
Characteristics | n (%) | |
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Male | 35 (16.1) |
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Female | 183 (83.9) |
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18-29 | 37 (17.0) |
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30-39 | 48 (22.0) |
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40-49 | 68 (31.2) |
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50-59 | 46 (21.1) |
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60+ | 19 (8.7) |
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Never married | 48 (22.0) |
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Currently married/Partnered | 128 (58.7) |
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Separated/Divorced/Widowed | 42 (19.3) |
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High school or less | 72 (33.0) |
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College/University completed | 92 (42.2) |
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Post-graduate degree completed | 54 (24.8) |
Pain interference (PI) was the primary pain outcome examined. Also included was one pain-behavior item, measuring pain intensity via a visual analogue scale. Most participants (90.6%, 184/203) rated their average day-to-day pain between 3 and 8 out of 10, with 62.6% (127/203) indicating pain of 6 or higher (mean 6.9, SD 1.9).
Impact of pain interference reported as “somewhat to very much”.
Domain of pain interference (n responses) | Pain interference variable | Cumulative % of participants, n (%) |
Cognitive (204) | Ability to take in information | 140 (68.6) |
Sleep | 155 (76.0) | |
Concentration | 155 (76.0) | |
Social (203) | Enjoyment of life | 178 (87.7) |
Social activities | 174 (85.7) | |
Relationships with others | 163 (80.3) | |
Family life | 149 (73.4) | |
ADL (204) | Day-to-day activities | 174 (85.3 |
Household chores | 179 (87.7) | |
Ability to work (including work at home) | 167 (81.9) | |
Psychological (203) | Emotional burden | 175 (86.2) |
Anxiety | 152 (74.9) | |
Depression | 159 (78.3) | |
Physical (204) | Sit (>30mins) | 147 (72.1) |
Stand (>30mins) | 182 (89.7) | |
Walk (>30mins) | 174 (85.7) |
Participants were asked to respond to questions about only those platforms related to their own pain self-management. For this reason, response numbers varied for each platform. Results are ranked from most used to least in the last 12 months (
Number of people with chronic pain using each social media platform.
Platform | Responses, n | “Yes” to use, n (%) |
Social network sites | 210 | 189 (90.0) |
Discussion forums | 180 | 86 (47.8) |
Blogs | 199 | 88 (44.2) |
Wikis | 191 | 74 (38.7) |
Video sharing sites | 183 | 60 (32.8) |
Microblogs | 185 | 29 (15.7) |
Photo sharing sites | 180 | 18 (10.0) |
Tag/Aggregators | 184 | 12 (6.5) |
Chat rooms | 177 | 11 (6.2) |
Virtual worlds | 183 | 7 (3.8) |
Social media platforms used by people with chronic pain (PWCP).
We asked participants how much they valued different platforms for self-management of chronic pain (
Perceived value of social media platforms for chronic pain self-management.
Platform/Responses (n) | Not valuable, n (%) | A little bit, n (%) | Somewhat, n (%) | Quite a bit, n (%) | Very much, n (%) |
Social network sites (168) | 4 (2.4) | 20 (12.0) | 33 (19.6) | 52 (31.0) | 59 (35.1) |
Discussion forums (78) | 2 (2.6) | 7 (9.0) | 15 (19.2) | 24 (30.8) | 30 (38.5) |
Blogs (81) | 1 (1.2) | 13 (16.0) | 23 (28.4) | 29 (35.8) | 15 (18.5) |
Wikis (62) | 3 (4.8) | 9 (14.5) | 22 (35.5) | 16 (25.8) | 12 (19.4) |
Video sharing sites (54) | 1 (1.9) | 12 (22.2) | 14 (25.9) | 17 (31.5) | 10 (18.5) |
Microblogs (26) | 0 (0.0) | 4 (15.4) | 9 (34.6) | 6 (23.1) | 7 (26.9) |
Frequency of use is presented in
Frequency of use of social media platforms for chronic pain self-management.
Platform/Responses (n) | At least daily, n (%) | At least weekly, n (%) | At least monthly, n (%) | Less than once a month, n (%) |
Social network sites (169) | 60 (35.5) | 70 (41.4) | 24 (14.2) | 15 (8.9) |
Discussion forums (80) | 11 (13.8) | 29 (36.2) | 18 (22.5) | 22 (27.5) |
Blogs (79) | 7 (8.9) | 21 (26.6) | 28 (35.4) | 23 (29.1) |
Wikis (64) | 1 (1.5) | 6 (9.4) | 19 (29.7) | 38 (59.4) |
Video sharing sites (54) | 1 (1.9) | 13 (24.1) | 18 (33.3) | 22 (40.7) |
Microblogs (26) | 11 (42.3) | 9 (34.6) | 3 (11.5) | 3 (11.5) |
Graphical representations of PROs for each social media platform can be found in
Psychological health consistently demonstrated the greatest number of positive reports from social media use, with “emotional burden” most reported, followed by “depression” and “anxiety”.
Patient-reported outcomes from social network site use.
Positive patient-reported psychological health reports from social media platform use (somewhat to very much).
Psychological variable | Platform/Responses (n) | Cumulative % of participants, n (%) |
Emotional burden | Social network sites (166) | 120 (72.3) |
Discussion forums (64) | 39 (60.9) | |
Blogs (66) | 41 (62.1) | |
Wikis (40) | 12 (30.0) | |
Video sharing sites (42) | 24 (57.1) | |
Microblogs (20) | 11 (55.0) | |
Depression | Social network sites (159) | 106 (66.7) |
Discussion forums (57) | 30 (52.6) | |
Blogs (63) | 40 (63.5) | |
Wikis (38) | 9 (23.7) | |
Video sharing sites (39) | 24 (61.5) | |
Microblogs (19) | 9 (47.4) | |
Anxiety | Social network sites (157) | 104 (66.2) |
Discussion forums (59) | 31 (52.5) | |
Blogs (65) | 37 (56.9) | |
Wikis (42) | 13 (31.0) | |
Video sharing sites (41) | 21 (51.2) | |
Microblogs (20) | 12 (60.0) |
Social health showed consistently positive PROs. Most reports were for “enjoyment of life”: using microblogs (72%, 13/18), SNS (62%, 100/162), VSS (59%, 23/39), blogs (55%, 35/62), DF (52%, 31/60), and wikis (18%, 7/39). Both “participation in social activities” and “family life” were also well reported. However, there were a greater number of cumulated responses for “relationships with other people” across all platforms: SNS users (65.8%, 106/161), followed by microblogs (55%, 11/20), blogs (51%, 31/61), DF (50%, 32/64), VSS (32%, 12/37), and wikis (8%, 3/36).
“Ability to take in new information” was consistently reported positively for all platforms. The greatest number of positive PROs was by VSS users (74%, 32/43). This was also the stand-out health outcome reported by wiki users (70%, 31/44). Reports from use of all other platforms were equally positive: microblogs (70%, 14/20), SNS (68%, 110/161), blogs (67%, 45/67), and DF (65%, 43/66). “Ability to concentrate” had fewer positive responses and those for “ability to sleep” were minimal.
Number of reports of a positive impact of social media use on the three components of ADLs was small. “Ability to perform day-to-day activities” was most reported. This can be seen in
Impact on physical health was also generally consistent across all platforms, showing only a relatively small number of positive reports. Positive impact on physical health was predominantly reported as “not at all”.
“Reason not working” (due to ill health in 76% of cases) was most strongly correlated to the PROs. It showed the highest statistical significance in regards to psychological and social health reports for all three most reported platforms, but with less significance in DF use than in SNS and blog use. Gender also showed statistical association with PROs. However, its influence appeared to be limited to psychological well-being reported from SNS use, and social life from DF use.
Relationship between demographic characteristics and patient-reported outcomes.
The scale used to assess perceived value/preferences regarding the therapeutic affordances underlying social media use was different to that measuring PROMIS-PI, ranging from “strongly disagree” to “strongly agree”. Components of the “adaptation” affordance (frequency of use when flared or stable) were the exception, measured as “not at all” to “very often”. Results are again reported as cumulative percentages of participant reports. Largely positive reports within a narrow band included “control the amounts and sorts of things others know about them” and “ability to interact when it suits” (asynchronous communication). The “narration” affordance was most notable for its statistical association to PROs, with “learning from others’ experiences” most significant.
The three individual components of “identity” asked participants to rate the following preferences: (1) preference to control the amounts and sorts of things others knew about them, (2) preference to remain anonymous, and (3) preference to know details about the people they were interacting with. The first was supported by the greatest number, with a cumulative percentage of responses (agree to strongly agree) ranging from 83% (20/24 microblog users) to 93% (39/42 VSS users) across all platforms. The second preference showed considerably more variability ranging from 29% (50/170 SNS users) to 83% (34/41 wiki users). Finally, the third preference was supported by a lesser number, 15% (6/41 wiki users) to 37% (63/172 SNS users).
Perceived value for the “flexibility” social media offer examined (1) asynchronous interaction, (2) synchronous interaction, and (3) geographic freedom, that is, using social media away from home. Cumulated positive responses were numerous for asynchronous interaction, ranging from 80% (57/71 blog users) to 92% (158/172 SNS users and 47/51 wiki users). Conversely, synchronous interaction was supported by markedly fewer participants, ranging from 0% (VSS, blog, and wikis users) to 8% (14/169 SNS users). Finally geographic freedom was supported by moderate numbers of users across platforms, ranging from 63% (46/73 DF users) to 71% (119/168 SNS users).
“Structure” examined social media’s ability to guide participants to useful information and support. It also examined preferences for moderated and facilitated online interaction. Support for each component was highly varied: (1) filtering/guiding to useful information ranged from 61% (25/41 VSS users) to 81% (59/73 DF users), (2) preferred presence of health professional ranged from 68% (51/75 DF users) to 89% (51/57 wiki users), and (3) preferred presence of a moderator/facilitator ranged from 43% (17/40 VSS users) to 75% (56/75 DF users).
The “narrative” effect examined social media’s ability to foster shared experiences of illness. Between 44% (19/43 wiki users) and 92% (71/77 blog users) perceived that social media are “effective platforms for recording stories of chronic pain”. More specifically, participants were asked to indicate level of agreement regarding “sharing one’s own experiences”, which ranged from 18% (7/40 wiki users) to 82% (139/170 SNS users) and “learning from the experiences of others”, which was considerably higher with 56% (24/43 wiki users) to 96% (69/75 microblog users).
Percentage (agree-strongly agree) of participants indicating therapeutic value of sharing experiences (one’s own vs others’).
Platform | One’s own, n (%) | Others’, n (%) |
Social network sites | 139 (82) | 153 (91) |
Discussion forums | 50 (74) | 69 (92) |
Blogs | 41 (61) | 72 (94) |
Microblogs | 14 (58) | 24 (96) |
Video sharing sites | 7 (20) | 43 (90) |
Wikis | 7 (18) | 24 (56) |
“Adaptation” was investigated relative to (1) use changing dependent on stage of illness, which ranged from 52% (23/44 wiki users and 13/25 microblog users) to 71% (121/170 SNS users); and (2) frequency of use during flare-ups of pain or (3) frequency of use during stable pain.
Percentage of participants describing usage frequency of social media platforms (fairly often-very often) according to pain status.
Platform | Flared-up, n (%) | Stable, n (%) |
Social network sites | 83 (48) | 94 (54) |
Discussion forums | 38 (52) | 26 (37) |
Blogs | 28 (39) | 26 (36) |
Microblogs | 17 (74) | 14 (64) |
Video sharing sites | 10 (23) | 11 (24) |
Wikis | 15 (36) | 6 (14) |
A trend on the right of the heat map is observed where two particular therapeutic affordances of social media provide the strongest association to reported health outcomes. All three components of the narrative (or, shared experiences) effect showed the highest statistical significance regarding the PROs. However, the effect is strongest for the component “learning from others’ experiences”. This is true for SNS, blog, DF, and microblog use. We note that the statistically significant PROs mirror those reported earlier: cognitive, social, and psychological health (with ADLs also seen in SNS and DF use).
Notable outliers are also seen in
Relationship between therapeutic affordances and patient-reported outcomes.
The results presented in this paper provide a detailed representation of social media use in chronic pain management. Using a systematic approach to survey design, we have been able to gain a clearer demographic picture of PWCP who use social media as part of their self-management, typical health outcomes they report, and the therapeutic affordances underpinning these results. We explore each of these areas further.
This study’s first hypothesis was that social media’s therapeutic effect on PROs would show statistical significance correlating to particular demographics. While results did not confirm this hypothesis, they did corroborate findings in academic literature. With health status controlled for, the results show that users tend to be well-educated females, in relationships, aged 30-60 years. This finding has been reported elsewhere [
Participants indicated a clear propensity for SNS. Several factors may contribute to this finding. First, SNS are often synonymous with Facebook and while we defined SNS as “online community platforms that allow users to connect and share interests and/or activities”, we also provided examples to respondents, such as Facebook, MySpace, PatientsLikeMe, and Daily Strength. This may have biased responses in favor of Facebook. However, Facebook boasts hundreds of millions of users globally and hosts several disease-specific support groups, thus is an accurate representation of social networking [
Use of DF highlights an ongoing debate. Social media are recognized as services that allow for the principles of Web 2.0 to be realized and include SNS, blogs, VSS, and wikis [
Findings regarding optimal frequency of social media use to positively impact PROs were inconclusive. Previous studies investigating frequency of Internet use by people with chronic disease hypothesized that health-related Internet use would show a pattern of relatively high frequency; however, their findings showed a much more occasional usage pattern [
Ongoing debate in academic literature surrounds whether health social media users are more likely to be active participants or passive users (posters or lurkers). Reports lean towards seeking of information or “lurking” over communication and engagement [
The graphs in
Positive impact on “emotional burden” was the most reported health outcome in our survey (most evident with SNS use). Psychological well-being is often the focus of chronic pain literature and given the emotional burden chronic pain can place on individuals, it is not surprising that interventions often target this [
Hypothesis 2 was that health outcomes from social media use might be explicable according to therapeutic affordances underlying use across each platform.
Regarding the therapeutic affordance of “identity”, participants were most concerned with “preference to control the amounts and sorts of things they share with others”. Statistically, this was only significant for VSS use but was also noted within free-text survey responses.
“Flexibility” was observed via preferences for asynchronous communication (interacting at a time that suits). In microblog use, statistical significance was seen through positive reports for components of social health. The asynchrony provided by most social media has been well documented previously [
“Structure” measured via guidance to information and/or facilitated social media use showed varying levels of positive reports. While the trend was similar for all platforms, only DF use was shown to be statistically significant to positive reports for cognitive health. PWCP were positive about moderated/facilitated social media use, particularly for the involvement of health professionals in online interactions. This supports similar views that professional or facilitated online interactions diminish the risk of patients ending up with poor or misleading information [
“Narration” was very well supported in our study, providing the most statistically significant associations to PROs. The emotionally cathartic effect of sharing experiences online has been widely reported [
Finally, “adaptation”, measuring frequency of social media use relative to the user’s circumstances, has already been discussed. “Occasional” use of social media has been most commonly reported in health self-management. However, results showed that reports of increasing frequency of social media use were statistically significant, correlating to reports of positive psychological, social, and cognitive health outcomes, in conjunction with use of SNS, blogs, DF, and wikis. Significance was observed for both flares and stable periods of pain. However, a greater number of statistically significant PROs were seen for increased use when pain has flared up. This provides preliminary evidence that social media use may offer greatest benefits to those experiencing exacerbations of pain.
This survey forms part of a larger research project and framework being refined to generate evidence about health outcomes from social media use in chronic disease management [
The study has provided a much-needed, comprehensive update examining social media use in a chronic disease management context and the health outcomes reported (using chronic pain as an example). Its strengths lie in its global spread of results and coverage of a range of social media compared to previous surveys completed in this domain [
Also, we have introduced a novel way to extract and analyze a large amount of complex data. Heat mapping is a technique previously unused in this type of research; we have yet to note any other examples of this type of data visualization tool being applied to findings from social media research. This analysis technique is normally reserved for mapping gene expression in more complicated genomics experiments. However, using the same principles of clustering and measuring distance between variables provides a meaningful approach to process and visualize the data from the study. It may be equally useful to show associations between variables in other social media research contexts.
Response scale sensitivity was a persisting issue for data interpretation in this survey. Using a 5-point Likert scale, most questions aimed to delineate and grade the differences in perceived value of social media and how each impacts PROs. No previous questionnaires examining PROs from social media use in chronic disease have been formally validated or standardized. Regarding social media use, it was difficult to discern the difference between reports of somewhat/quite a bit/very much, agree/strongly agree, or fairly often/very often. It was for this reason that cumulative percentage of participant responses (ie, somewhat to very much) was used. Validity and reliability testing of survey instruments in social media research is warranted for future research to achieve greater accuracy, particularly to determine sensitivity between scale points.
Our quantitative data collection methods did not make specific provision for the reporting of perceived adverse effects. Answers biased towards “no help” or “not at all” may actually have been indicative of deterioration or a “negative” impact. Therefore, a lack of reported adverse effects is not necessarily accurate. However, we purposely included the option for participants to provide open commentary free of coercion about each platform they used for chronic pain management [
Survey fatigue was another central issue relevant to study design, given that our survey asked questions about a wide variety of social media. This was pertinent for participants who reported using several platforms as part of their chronic pain self-management. Fatigue and concentration may have become factors. In order to attempt to mitigate this and potential attrition, not all questions were marked as mandatory. While this resulted in a good completion rate, it also meant that response numbers to different questions were inconsistent, as can be seen from the results. More recognizable social media (ie, SNS, blogs) received more answers than others (ie, virtual worlds, tagging/bookmarking sites).
It is also possible that not all therapeutic affordances of social media are derived from every platform, thus creating variability in response counts. We also acknowledge that individual interpretation of therapeutic affordances may differ. Refinement and clarification of the therapeutic affordances described in this study is the subject of a separate paper [
Finally, social media use by participants in this study represents a self-selecting population. This has been the subject of various published papers [
This research highlights several key considerations. Approaching social media from the perspective of what it therapeutically affords to users is not only a meaningful way to survey participants but provides a means to examine the underlying factors that may underpin reported health outcomes from use. Further research exploring the nature and impact of those therapeutic affordances is warranted. This chronic pain-focused research further validates previous research into health outcomes from social media use in chronic disease management [
The aim of this study was to improve understanding of health outcomes reported by PWCP in relation to various therapeutic affordances of social media. While many statistically significant findings were observed supporting this aim, we conclude that our results to date do not prove the two hypotheses we formed. Our understanding of social media use to impact health outcomes is not yet mature enough to recommend such definitive use in clinical care. Our study has added to previous research, with findings highlighting positive impact on psychological, social, and cognitive health from social media use, and showing that much of the potential of social media for impacting such health outcomes lies in their ability to foster the narrative experience. The results of this study move the research agenda one step closer to a more evidence-based approach to social media use for health.
Survey instrument.
Activities performed when using social media.
Patient-reported outcomes and social media use.
Demographic characteristics and patient-reported outcomes.
Therapeutic affordances of social media and patient-reported outcomes.
activities of daily living
discussion forums
health-related quality of life
pain interference
Patient-Reported Outcome Measurement Information System—Pain Interference
patient-reported outcomes
people with chronic pain
social network sites
video sharing sites
The authors would like to thank the Institute for a Broadband Enabled Society (IBES) at the University of Melbourne, Victoria, Australia, for ongoing support of this research. We would also like to thank Associate Professor Graham Hepworth of the University’s Statistics Consulting Centre for his advice on survey design and analysis, and we acknowledge advice from Dr Reeva Lederman of the University’s Department of Computing and Information Systems about the use of the term “affordance”.
None declared.