Dataset Information

Outcomes in Child Health: Exploring the Use of Social Media to Engage Parents in Patient-Centered Outcomes Research.

ABSTRACT:

Background

With the rapid growth of technology and its improved accessibility globally, social media is gaining an increasingly important role in health care. Patients are frequently engaging with social media to access information, share content, and interact with others in online health communities. However, the use of social media as a stakeholder engagement strategy has been minimally explored, and effective methods for involving participants in research on the identification of patient-centered outcomes remain unknown.

Objective

The aim of this study was to evaluate the process of using social media to engage parents in identifying patient-centered outcomes, using acute respiratory infections in children as an example to gauge feasibility.

Methods

We conducted a process evaluation of a two-phase Web-based strategy to engage parents in research on patient-centered outcomes. In the first phase, we developed a website and study-specific Facebook and Twitter accounts to recruit parents to complete a Web-based survey identifying patient-centered outcomes. In the second phase, we used Facebook to host discussion with parents based on the survey results. The reach of social media as an engagement strategy and the characteristics of the population recruited were assessed.

Results

During the first phase, there were 5027 visits to the survey site, 110 participants completed the survey, 553 unique users visited the study website (675 visits), the Facebook page received 104 likes, and the Twitter account gained 52 followers over the 14-week study period. Most survey respondents identified Facebook (51.8%, 57/110) or a friend (45.5%, 50/110) as their source of referral. It was found that 70.0% (77/110) of respondents resided in Canada, in urban centers (92.7%, 102/110), and 88.2% (97/110) had a college or university degree or higher. The median year of birth was 1978 and 90.0% (99/110) were female. Most survey responses (88.2%, 97/110) were completed during the first month of the study. In the second phase, 4 parents participated in the discussion, our Facebook page gained 43 followers, and our posts reached 5866 users. Mirroring the first phase, most followers were female (79%, 34/43), between 35 and 44 years (49%, 21/43), and resided in Canada (98%, 42/43). User engagement was variable, with no clear patterns emerging in timing, topic, or type of post.

Conclusions

Most participants were highly educated, urban dwelling, and female, limiting diversity and representativeness. The source of referral for most survey respondents was through Facebook or a friend, suggesting the importance of personal connections in the dissemination and uptake of information. User engagement with the Facebook-based discussion threads was inconsistent and difficult to initiate. Although there is substantial interest in the use of social media as a component of an effective patient engagement strategy, challenges regarding participant engagement, representativeness, obtaining buy-in, and resources required must be carefully considered.

SUBMITTER: Dyson MP

PROVIDER: S-EPMC5374273 | biostudies-literature | 2017 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Outcomes in Child Health: Exploring the Use of Social Media to Engage Parents in Patient-Centered Outcomes Research.

Dyson Michele P MP Shave Kassi K Fernandes Ricardo M RM Scott Shannon D SD Hartling Lisa L

Journal of medical Internet research 20170316 3

<h4>Background</h4>With the rapid growth of technology and its improved accessibility globally, social media is gaining an increasingly important role in health care. Patients are frequently engaging with social media to access information, share content, and interact with others in online health communities. However, the use of social media as a stakeholder engagement strategy has been minimally explored, and effective methods for involving participants in research on the identification of pati ...[more]

PMID: 28302593

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Project description:Introduction/objectivesThe engagement of patients and other stakeholders is a critical element in the design of patient-centered outcomes research studies. However, methodology for scalable engagement in research management particularly activities such as operationalization of principles and setting of priorities is not well-developed. The objective of this study is to describe a novel approach for scalable stakeholder engagement in research aligned with the Patient-Centered Outcomes Research Institute (PCORI) engagement principles, which was evaluated in a national clinical data research network.Materials and methodsPatient, patient advocate, clinician, and researcher stakeholders were recruited from clinical sites, as well as social media sites related to the 3 conditions of focus, heart failure, obesity, and Kawasaki disease. The engagement strategy was designed, implemented, and mapped to the PCORI engagement principles. Evaluation included internal assessment and quantitative measures of online engagement.ResultsWe operationalized the PCORI principles with 12 stakeholder engagement strategies and convened stakeholder advisory boards and online research prioritization panels to determine research priorities in a rigorous, deliberative process. A total of 46 advisors (20 patients) and 339 panelists (159 patients) actively participated. There were not significant differences between patients and clinicians in level of online engagement. Nonetheless, while patients reported a slightly greater challenge with following online discussion, they overall had a more favorable opinion about use of the online format.Discussion/conclusionAn efficient way to engage large numbers of representative stakeholders in research is a necessary first step to assure the public of trustworthy use of data networks for health research. This paper describes a comprehensive approach to engagement in patient-centered outcomes research management that informs ongoing development of rigorous methodologies in this area.

Project description:IntroductionFew studies have examined the impact of emergency department (ED) social interventions on patient outcomes and revisits, especially in underserved populations. Our objective in this study was to characterize a volunteer initiative that provided community medical and social resources at ED discharge and its effect on ED revisit rates and adherence to follow-up appointments at a large, county hospital ED.MethodsWe performed a cross-sectional analysis of ED patients who received medical and social resources and an educational intervention at discharge between September 2017-June 2018. Demographic information, the number of ED return visits, and outpatient follow-up appointment adherence within 30 and 90 days of ED discharge were obtained from electronic health records. We obtained data regarding patient utilization of resources via telephone follow-up communication. We used logistic regression analyses to evaluate associations between patient characteristics, reported resource utilization, and revisit outcomes.ResultsMost patients (55.3% of 494 participants) identified as Latino/Hispanic, and 49.4% received healthcare assistance through a local governmental program. A majority of patients (83.6%) received at least one medical or social resource, with most requesting more than one. Patients provided with a medical or social resource were associated with a higher 90-day follow-up appointment adherence (odds ratio [OR] 2.56; 95% confidence interval [CI] 1.05-6.25, and OR 4.75; 95% CI 1.49-15.20], respectively), and the provision of both resources was associated with lower odds of ED revisit within 30 days (OR 0.50; 95% CI 0.27-0.95). Males and those enrolled in the healthcare assistance program had higher odds of ED revisits, while Hispanic/Latino and Spanish-speaking patients had lower odds of revisits.ConclusionAn ED discharge intervention providing medical and social resources may be associated with improved follow-up adherence and reduced ED revisit rates in underserved populations.

Project description:IntroductionSocial media listening (SML) is an approach to assess patient experience in different indications. This is the first study to report the results of using SML to understand patients' experiences of living with dry eye disease (DED).MethodsPublicly available, English-language social media content between December 2016 and August 2017 was searched employing pre-defined criteria using Social Studio®, an online aggregator-tool for posts from social media channels. Using natural language processing (NLP), posts were indexed using patient lexicon and disease-related keywords to derive a set of patient posts. NLP was used to identify relevance, followed by further manual evaluation and analysis to generate patient insights.ResultsIn all, 2279 possible patient records were identified following NLP, which were filtered for relevance to disease area by analysts, resulting in a total of 1192 posts which formed the basis of this study. Of these, 77% (n = 915) were from the USA. Symptoms, causes, diagnosis and treatments were the most commonly discussed themes. Most common symptoms mentioned were eye dryness (138/901), pain (114/901) and blurry vision (110/901). Pharmaceutical drugs (prescription and over-the-counter; 55%; 764/1393), followed by medical devices (20%; 280/1393), were mentioned as major options for managing symptoms. Of the pharmaceutical drugs, eye drops (33%; 158/476) and artificial tears (10%; 49/476) were the most common over-the-counter options reported, and Restasis® (22%; 103/476) and Xiidra® (6%; 27/476) were the most common prescription drugs. Patients voiced a significant impact of DED on their daily activities (4%; 9/224), work (23%; 51/224) and driving (12%; 26/224). Lack of DED specialists, standard diagnostic procedures, effective treatment options and need to increase awareness of DED among patients were identified as the key unmet needs.ConclusionsInsights revealed using SML strengthen our understanding about patient experiences and their unmet needs in DED. This study illustrates that an SML approach contributed effectively in generating patient insights, which can be utilised to inform early drug development process, market access strategies and stakeholder discussions.FundingNovartis Pharma AG, Basel, Switzerland. Plain language summary available for this article.

Dataset Information

Outcomes in Child Health: Exploring the Use of Social Media to Engage Parents in Patient-Centered Outcomes Research.

Background

Objective

Methods

Results

Conclusions

Publications

Outcomes in Child Health: Exploring the Use of Social Media to Engage Parents in Patient-Centered Outcomes Research.

Similar Datasets

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