Real-world data and the patient perspective: the PROmise of social media?

McDonald, Laura; Malcolm, Bill; Ramagopalan, Sreeram V; Syrad, H.

doi:10.1186/s12916-018-1247-8

Cited by 55 publications

(47 citation statements)

References 37 publications

(36 reference statements)

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“…The research team used social listening methods, 18,19 which were developed to extract information from social media channels, to explore symptoms and disease progression of COVID-19. The team analyzed data from 2 social media communities: conversation data from a public Reddit group, including natural history-like posts detailing the time line of the disease, and a closed Facebook group poll.…”

Section: Introductionmentioning

confidence: 99%

Social Listening as a Rapid Approach to Collecting and Analyzing COVID-19 Symptoms and Disease Natural Histories Reported by Large Numbers of Individuals

Picone¹,

Inoue²,

DeFelice³

et al. 2020

Population Health Management

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Given the severe and rapid impact of COVID-19, the pace of information sharing has been accelerated. However, traditional methods of disseminating and digesting medical information can be time-consuming and cumbersome. In a pilot study, the authors used social listening to quickly extract information from social media channels to explore what people with COVID-19 are talking about regarding symptoms and disease progression. The goal was to determine whether, by amplifying patient voices, new information could be identified that might have been missed through other sources. Two data sets from social media groups of people with or presumed to have COVID-19 were analyzed: a Facebook group poll, and conversation data from a Reddit group including detailed disease natural history-like posts. Content analysis and a customized analytics engine that incorporates machine learning and natural language processing were used to quickly identify symptoms mentioned. Key findings include more than 20 symptoms in the data sets that were not listed in online lists of symptoms from 4 respected medical information sources. The disease natural history-like posts revealed that people can experience symptoms for many weeks and that some symptoms change over time. This study demonstrates that social media can offer novel insights into patient experiences as a source of real-world data. This inductive research approach can quickly generate descriptive information that can be used to develop hypotheses and new research questions. Also, the method allows rapid assessments of large numbers of social media conversations that could be applied to monitor public health for emerging and rapidly spreading diseases such as COVID-19.

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Section: Introductionmentioning

confidence: 99%

Social Listening as a Rapid Approach to Collecting and Analyzing COVID-19 Symptoms and Disease Natural Histories Reported by Large Numbers of Individuals

Picone¹,

Inoue²,

DeFelice³

et al. 2020

Population Health Management

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“…Data were gathered from the online discussion forum embedded within the MOOC, where learners freely engaged in natural dialogue. This type of data is known as Real World Data (RWD), and is increasingly recognized as useful in research to better understand consumers perspectives and experiences [33]. It may also provide a real-time representation of consumers actively seeking nutrition information online.…”

Section: Introductionmentioning

confidence: 99%

Inflaming Public Interest: A Qualitative Study of Adult Learners’ Perceptions on Nutrition and Inflammation

et al. 2020

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Research suggests national dietary guidelines are losing public resonance, with consumers actively seeking alternate nutrition advice from unregulated online platforms that often propagate misinformation. Improved diet quality can beneficially affect inflammation, and with science relating to nutrition and inflammation also appealing to consumers, this emerging topic provides an opportunity to consider how novel engagement strategies can be used to increase public support of expert-generated advice. This study aimed to qualitatively explore MOOC learners’ perceptions and experiences of following diets believed to help manage inflammation. Data were collected from an evidence-based nutrition-focused Massive Open Online Course (MOOC), which included a unit titled Foods and Inflammation. The Framework method was used to analyze 12,622 learner comments, taken from the MOOC’s online discussion forum and questionnaire. Learners identified avoidance of core food groups, such as dairy and grains, as key in managing inflammation. Dietary advice came mainly from the internet, and health professionals reportedly lacked an appreciation of the learners’ underlying nutrition knowledge, providing oversimplified advice that did not satisfy their scientific curiosity. To help build consumer trust and increase engagement, health professionals need to consider innovative education strategies that utilize novel topics such as nutrition and inflammation, in a safe and accurate manner.

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“…In particular, the US Food and Drug Administration guidance highlights social media searches as a method to gain insight on the patient perspective of symptoms and disease impact [22]. Compared with traditional methods, social media data can provide a large-scale, rapid, and cost-effective means to capture patient-reported information in an easily accessible manner [21,[23][24][25]. Although social media data are generally self-reported, have no interviewer bias, and have fewer resource burdens vs. traditional sources, data can be inconsistent and limited.…”

Section: Introductionmentioning

confidence: 99%

“…Although social media data are generally self-reported, have no interviewer bias, and have fewer resource burdens vs. traditional sources, data can be inconsistent and limited. Furthermore, there remains some uncertainty in the representativeness of the information being reported on social media [21,[23][24][25]. Varying results have been reported in other therapy areas where YouTube was utilized for communicating health and medical treatment information [26][27][28][29][30].…”

Section: Introductionmentioning

confidence: 99%

Patient-Centered Insights on Treatment Decision Making and Living with Acute Myeloid Leukemia and Other Hematologic Cancers

Crawford¹,

Sully

Conroy³

et al. 2019

Patient

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Expectations relating to treatment and survival, and factors influencing treatment decisions are not well understood in adult patients with acute myeloid leukemia. This study analyzed combined findings from a targeted literature review with patientreported information shared on YouTube to further understand patient perspectives in hematologic cancers and, in particular, acute myeloid leukemia. The targeted literature review included articles concerning patient (aged ≥ 18 years) experiences or perspectives in acute myeloid leukemia or other hematologic cancers. YouTube video selection criteria included patients (aged ≥ 60 years) with self-reported acute myeloid leukemia. In total, 26 articles (13 acute myeloid leukemia-specific and 14 other hematologic cancers, with one relevant to both populations) and 28 videos pertaining to ten unique patients/caregivers were identified. Key concepts reported by patients included the perceived value of survival for achieving personal and/or life milestones, the emotional/psychological distress of their diagnosis, and the uncertainties about life expectancy/prognosis. Effective therapies that could potentially delay progression and extend life were of great importance to patients; however, these were considered in terms of quality-of-life impact and disruption to daily life. Many patients expressed concerns regarding the lack of treatment options, the possibility of side effects, and how their diagnosis and treatment would affect relationships, daily lives, and ability to complete certain tasks. Both data sources yielded valuable and rich information on the patient experience and perceptions of hematologic cancers, in particular for acute myeloid leukemia, and its treatments. Further understanding of these insights could aid discussions between clinicians, patients, and their caregivers regarding treatment decisions, highlight outcomes of importance to patients in clinical studies, and ultimately, inform patient-focused drug development and evaluation.

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Real-world data and the patient perspective: the PROmise of social media?

Cited by 55 publications

References 37 publications

Social Listening as a Rapid Approach to Collecting and Analyzing COVID-19 Symptoms and Disease Natural Histories Reported by Large Numbers of Individuals

Social Listening as a Rapid Approach to Collecting and Analyzing COVID-19 Symptoms and Disease Natural Histories Reported by Large Numbers of Individuals

Inflaming Public Interest: A Qualitative Study of Adult Learners’ Perceptions on Nutrition and Inflammation

Patient-Centered Insights on Treatment Decision Making and Living with Acute Myeloid Leukemia and Other Hematologic Cancers

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