Leveraging social media to engage adolescent participants in patient-centered cohort research for the clinical care of rheumatic diseases

利用社交媒体让青少年参与者参与以患者为中心的风湿性疾病临床护理队列研究

• 批准号: 9387817
• 负责人: ELISSA R WEITZMAN
• 金额: $ 19.47万
• 依托单位: BOSTON CHILDREN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-08-01 至 2019-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9387817
• 关键词: Address; Adolescent; Affect; Arthritis; Autoimmune Diseases; Behavioral; Child; Childhood; Chronic; Chronic Disease; Chronically Ill; Clinic; Clinical; Clinical Data; Clinical Research; Cohort Studies; Collection; Communicable Diseases; Complement; Computers; Data; Depressed mood; Disease; Enrollment; Epidemiologist; Fatigue; Fostering; Frequencies; Goals; Health; Health Status; Health behavior; Illness impact; Information Systems; Intervention; Investigation; Letters; Light; Link; Lupus; Measurement; Measures; Mining; Modeling; Monitor; Nature; Outcome; Pain interference; Participant; Patient Outcomes Assessments; Patient Self-Report; Patient-Centered Care; Patients; Periodicity; Prospective cohort study; Psyche structure; Public Health; Quality of life; Registries; Reporting; Research; Research Personnel; Retinal blind spot; Rheumatism; Rheumatology; Risk; Sampling; Scientist; Services; Social Behavior; Social Values; Source; Strategic Planning; Stream; Structure; Surveys; Symptoms; Teenagers; Testing; Time; United States National Institutes of Health; Work; Youth; aged; clinical care; cohort; data registry; data sharing; demographics; experience; follow-up; health data; improved outcome; insight; multidisciplinary; novel; patient oriented; pediatric patients; permissiveness; psychosocial; public health research; reduce symptoms; research and development; social; social media; symptom treatment; willingness

PROJECT SUMMARY/ABSTRACT The purpose of our project is to understand the feasibility and value of collecting social media data from a cohort of teens with a chronic rheumatic condition, to augment understanding of psychosocial risks associated with chronic illness and complement structured patient-reported and clinical metrics. Detailed and sensitive investigations with longitudinally engaged cohorts of youth are needed to understand the multifaceted experience of chronic illness and the impact of the disease course and treatment on the developing child. Recognizing this, the NIH has invested in the Patient Reported Outcomes Measurement Information System (PROMIS) Pediatric item banks, which cover a myriad of physical, mental and social domains. Availability of these measures is anticipated to drive better understanding of the experience of chronic illness for affected youth in service of patient-centered care and optimal outcomes. To attain this, we need nimble and scalable approaches for engaging youth in regularly sharing information germane to their health. Social media may address this need: youth participation in social media is ubiquitous and large percentages of youth engage around health and social behaviors. Harnessing this engagement to foster research participation and sharing of patient reported outcomes (PROs) might lessen research burden, lower barriers to research participation, foster reporting about conditions/treatments, and support regular follow-up. Potential models include: 1) eliciting PROs via social media, or 2) permissioned monitoring and mining of shared social media data. Our specific aims are: Aim 1 – Quantify willingness to share social media data for research. The main hypothesis to be tested is that compared to youth who decline, youth who share social media data will have better psychosocial functioning, fewer symptoms and lower disease activity. Aim 2 – Understand the utility of using social media to source collection of patient-reported health information. The main hypotheses to be tested are that: (a) fluctuations in social media use will correspond to changes in health status; and (b) the content of social media posts will correspond to patients’ experiences of their condition, symptoms and treatment. For each aim, we will compare social media data with clinical and PRO data acquired in the clinic. Findings will inform the nationally prioritized research goal of enabling cohort engagement and data donation for health research, and development of patient-centered interventions vital to improve outcomes.

项目概要/摘要 我们项目的目的是了解从社交媒体收集社交媒体数据的可行性和价值 患有慢性风湿病的青少年队列，以增强对相关心理社会风险的了解 具有慢性疾病和补充结构化的患者报告和临床指标。 需要对青少年进行纵向队列调查，以了解多方面的情况 慢性病的经历以及病程和治疗对发育中儿童的影响。 认识到这一点，美国国立卫生研究院投资了患者报告结果测量信息系统 (PROMIS) 儿科项目库，涵盖身体、心理和社会的众多领域。 预计这些措施将有助于更好地了解受影响者的慢性病经历 为了实现这一目标，我们需要灵活且可扩展的服务。 让青少年定期分享与其健康相关的信息的方法可能会在社交媒体上出现。 满足这一需求：青年人普遍参与社交媒体，并且很大比例的青年人参与其中 利用这种参与来促进研究参与和分享。 患者报告结果（PRO）可能会减轻研究负担，降低参与研究的障碍， 促进有关病情/治疗的报告，并支持定期随访，潜在的模式包括：1) 通过社交媒体吸引 PRO，或 2）对共享社交媒体数据进行许可监控和挖掘。 具体目标是： 目标 1 – 量化分享社交媒体数据以供研究的意愿 主要假设。 待测试的是，与下降的年轻人相比，分享社交媒体数据的年轻人会拥有更好的表现 目标 2 – 了解使用的效用。 社交媒体收集患者报告的健康信息 要检验的主要假设是 (a) 社交媒体使用的波动将与健康状况的变化相对应；(b) 社交媒体的内容； 社交媒体帖子将与患者的病情、症状和治疗经历相对应。 每个目标，我们都会将社交媒体数据与临床和临床中获得的 PRO 数据进行比较。 告知国家优先研究目标，即促进队列参与和数据捐赠以促进健康 研究和开发以患者为中心的干预措施对于改善结果至关重要。