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Table 2 Characteristics of included review papers

From: Spontaneously generated online patient experience data - how and why is it being used in health research: an umbrella scoping review

Ref

Title

Review Aims/Objectives

Area

Data Source

Review type

No Papers

Abbe 2016 [23]

Text mining applications in psychiatry: a systematic literature review

Two specific objectives: (1) to collect and analyse applications from the studies reviewed to assess the benefits and limitations of using TM; and (2) to identify new opportunities for use of TM in psychiatry.

Mental health

Online posts, qual studies, EHRs, biomed literature

Systematic

38

Abd Rahman 2020 [24]

Application of Machine Learning Methods in Mental Health Detection: A Systematic Review

The main purpose of this paper is to explore the adequacy, challenges, and limitations of a mental health problem detection based on OSNs data. The objective of this systematic literature review is to conduct a critical assessment analysis on detection of mental health problems using OSNs. We also investigated the appropriateness of this pre-mental health detection by identifying its data analysis method, comparison, challenges, and limitations.

Mental Health

Mostly Twitter or Sina Weibo (Chinese Twitter)

Systematic

22

Al-Garadi 2016 [25]

Using online social networks to track a pandemic: A systematic review

This study aims to investigate the adequacy and limitations of pandemic surveillances based on OSN data.

Infectious disease

Mostly Twitter

Systematic

20

Allen 2016 [26]

Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers

To understand the negotiation of long-term condition illness-work in patient online communities and how such work may assist the self-management of long-term conditions in daily life.

Chronic

Mostly disease specific / Gen health sites / FB

Systematic

21

Barros 2020 [27]

The Application of Internet-Based Sources for Public Health Surveillance (Infoveillance): Systematic Review

aimed to assess research findings regarding the application of IBSs for public health surveillance (infodemiology or infoveillance).

Public Health

SM, search queries

Systematic

162

Calvo 2017 [20]

Natural language processing in mental health applications using non-clinical texts

To highlight areas of research where NLP has been applied in the mental health literature and to help develop a common language that draws together the fields of mental health, human-computer interaction, and NLP.

Mental health

Mostly Twitter

Scoping

23

CastiiloSanchez 2020 [28]

Suicide Risk Assessment Using Machine Learning and Social Networks: A Scoping Review

Aims to identify the machine learning techniques used to predict suicide risk based on information posted on social networks.

Mental Health

any but mostly Twitter

Scoping

16

Charles-Smith 2015 [29]

Using Social Media for Actionable Disease Surveillance and Outbreak Management: A Systematic Literature Review

1. Q1. Can social media be integrated into disease surveillance practice and outbreak management to support and improve public health? 2. Q2. Can social media be used to effectively target populations, specifically vulnerable populations, to test an intervention and interact with a community to improve health outcomes?

Infectious disease

Mostly Twitter (81%)

Systematic

33

Cheerkoot-Jalim 2020 [30]

A systematic review of text mining approaches applied to various application areas in the biomedical domain

To identify the different text mining approaches used in different application areas of the biomedical domain, the common tools used, and the challenges of biomedical text mining as compared to generic text mining algorithms.

Any

EHR, Biomed literature, SM

Systematic

34

Convertino 2018 [31]

The usefulness of listening social media for pharmacovigilance purposes: a systematic review

To evaluate the usefulness and quality of signals from social media listening.

ADR

Varied

Systematic

38

Demner-Fushman 2016 [32]

Aspiring to Unintended Consequences of Natural Language Processing: A Review of Recent Developments in Clinical and Consumer-Generated Text Processing

To review work over the past two years in Natural Language Processing (NLP) applied to clinical and consumer-generated texts

Any

Clinical & UG texts.

General review

NS

Dobrossy 2020 [33]

“Clicks, likes, shares and comments” a systematic review of breast cancer screening discourse in social media

we had two aims: first, to assess the volume, participants, and content of breast screening social media communication and second, to find out whether social media can be used by screening organisers as a channel of patient education.

Breast Cancer

any but mostly Twitter

Systematic

17

Dol 2019 [34]

Health Researchers’ Use of Social Media: Scoping Review

To explore how social media is used by health researchers professionally, as reported in the literature

Any

Varied

Scoping

414

Dreisbach 2019 [35]

A systematic review of natural language processing and text mining of symptoms from electronic patient-authored text data

To synthesize the literature on the use of natural language processing (NLP) and text mining as they apply to symptom extraction and processing in electronic patient-authored text (ePAT)

Symptoms

Varied

Systematic

21

Drewniak 2020 [36]

Risks and Benefits of Web-Based Patient Narratives: Systematic Review

This review aimed to evaluate whether research-generated Web-based patient narratives have quantifiable risks or benefits for (potential) patients, relatives, or health care professionals

Any

Any SM

Systematic

17

Edo-Osagie 2020 [37]

A scoping review of the use of Twitter for public health research

Aims to review and synthesize the literature on Twitter applications for public health, highlighting current research and products in practice.

Any

Twitter

Scoping

92

Falisi 2017 [38]

Social media for breast cancer survivors: a literature review

To provide a systematic synthesis of the current literature in order to inform cancer health communication practice and cancer survivorship research.

Breast cancer

Online support groups

Systematic

98

Filannino 2018 [39]

Advancing the State of the Art in Clinical Natural Language Processing through Shared Tasks

To review the latest scientific challenges organized in clinical Natural Language Processing (NLP) by highlighting the tasks, the most effective methodologies used, the data, and the sharing strategies.

Any

Twitter/ReachOut forum

General review

17

Fung 2016 [40]

Ebola virus disease and social media: A systematic review

Ebola virus disease and social media, especially to identify the research questions and the methods used to collect and analyse social media

Infectious disease

Mostly Twitter & YouTube

Systematic

12

Gianfredi 2018 [41]

Harnessing Big Data for Communicable Tropical and Sub-Tropical Disorders: Implications from a Systematic Review of the Literature

To systematically assess the feasibility of exploiting novel data streams (NDS) for surveillance purposes and/or their potential for capturing public reaction to epidemic outbreaks.

Infectious disease

Varied but mostly Twitter

Systematic

47

Giuntini 2020 [42]

A review on recognizing depression in social networks: challenges and opportunities

investigates the state-of-the-art of how sentiment and emotion analysis approaches can identify depressive disorders in social networks.

Mental Health

Any: mostly Twitter

Systematic

26

Gohil 2018 [15]

Sentiment Analysis of Health Care Tweets: Review of the Methods Used

To review the methods used to measure sentiment for Twitter-based health care studies.

Any

Twitter

Systematic

12

Golder 2015 [43]

Systematic review on the prevalence, frequency, and comparative value of adverse events data in social media

To summarize prevalence, frequency, and comparative value of information on the adverse events of healthcare interventions from user comments and videos in social media.

ADR

Mostly discussion forums

Systematic

51

Gonzalez-Hernandez 2017 [44]

Capturing the Patient’s Perspective: a Review of Advances in Natural Language Processing of Health-Related Text

To review the recently published literature discussing the application of NLP techniques for mining health-related information from EHRs and social media posts. To provide a scope of the trends and advances in capturing the patient’s perspective on health within the last three years.

Any

SM & EHRs

General review

87

Gupta 2020 [45]

Social media-based surveillance systems for healthcare using machine learning: A systematic review

We review the recent work, trends, and machine learning (ML) text classification approaches used by surveillance systems seeking social media data in the healthcare domain. We also highlight the limitations and challenges followed by possible future directions that can be taken further in this domain.

Any

Twitter 64%

Systematic

26

Hamad 2016 [46]

Toward a Mixed-Methods Research Approach to Content Analysis in The Digital Age: The Combined Content-Analysis Model and its Applications to Health Care Twitter Feeds

To identify studies on health care and social media that used Twitter feeds as a primary data source and CA as an analysis technique.

ADR

Twitter

Narrative review

18

Ho 2016 [75]

Data-driven Approach to Detect and Predict Adverse Drug Reactions

Compares omics, social media and EHRs as sources of ADR knowledge

ADR

Any SM

General review

22

Injadat 2016 [47]

Data mining techniques in social media: A survey

Techniques, areas, performance, comparison of techniques, strengths and weaknesses of data mining methods

Any

Any SM

Survey

66

Karmegan 2020 [48]

A Systematic Review of Techniques Employed for Determining Mental Health Using Social Media in Psychological Surveillance During Disasters

Our review aims to analyse the possibility, effectiveness, and procedures of using social media data to understand the emotional and psychological impact of an unforeseen disaster on the community.

Mental Health

Any SM: mostly Twitter

Systematic

18

Kim 2017 [49]

Scaling Up Research on Drug Abuse and Addiction Through Social Media Big Data

To determine how social media big data can be used to understand communication and behavioural patterns of problematic use of prescription drugs.

Substance misuse

Twitter

Critical

8

Lafferty 2015 [50]

Perspectives on social media in and as research: A synthetic review

To summarize findings, opinions and discussion about the use of SoMe in research, including examples from psychiatry.

Mental health

Varied

Systematic

56

Lardon 2015 [51]

Adverse Drug Reaction Identification and Extraction in Social Media: A Scoping Review

To explore the breadth of evidence about the use of social media as a new source of knowledge for pharmacovigilance.

ADR

Mainly online forums +Twitter/blogs

Scoping

24

Lau 2019 [52]

Artificial Intelligence in Health: New Opportunities, Challenges, and Practical Implications

To summarise the state of the art during the year 2018 in consumer health informatics

Any

Any SM

General review

14

Lopez-Castroman 2019 [53]

Mining social networks to improve suicide prevention: A scoping review

Narrative review of possible suicidal behaviours on social networks

Mental health

NS

Scoping

NS

Mavragani 2020 [54]

Infodemiology and Infoveillance: Scoping Review

The aim of this paper is to provide a scoping review of the state-of-the-art in infodemiology along with the background and history of the concept, to identify sources and health categories and topics, to elaborate on the validity of the employed methods, and to discuss the gaps identified in current research.

Any

Mostly Twitter

Scoping

338

Neveol 2017 [55]

Making Sense of Big Textual Data for Health Care: Findings from the Section on Clinical Natural Language Processing

To identify the best clinical NLP papers of 2016

Any

SM + EHRs

General review

5

Neveol 2018 [21]

Expanding the Diversity of Texts and Applications: Findings from the Section on Clinical Natural Language Processing of the International Medical Informatics Association Yearbook

Summarize recent research / best papers for clinical NLP in 2017

Any

Any SM

General review

15

Patel 2015 [56]

Social Media Use in Chronic Disease: A Systematic Review and Novel Taxonomy

To evaluate clinical outcomes from applications of contemporary social media in chronic disease; to develop a conceptual taxonomy to categorize, summarize, and then analyse the current evidence base; and to suggest a framework for future studies on this topic

Chronic

Any SM

Systematic

42

Pourebrahim 2020 [57]

Adverse Drug Reaction Detection Using Data Mining Techniques: A Review Article

The aim of this study is to study, review and challenge the methods of ADR diagnosis by data mining on social media, especially Twitter.

ADR

Any SM: mostly Twitter

General

0

Qiao 2020 [58]

A Systematic Review of Machine Learning Approaches for Mental Disorder Prediction on Social Media

The purpose of this paper is to provide a systematic overview of SM studies in the mental disorder detection field.

Mental Health

Facebook, Twitter, Reddit, Tumblr, Instagram

General

0

Ru & Yao 2019 [7]

A Literature Review of Social Media-Based Data Mining for Health Outcomes Research

To summarize key points of the area in data accessibility, textual data pre-processing methods, analysis methods, opportunities, and challenges.

Any

Any SM

General review

19

Santos 2019 [59]

Datamining and machine learning techniques applied to public health problems: A bibliometric analysis from 2009 to 2018

To: (i) analyse the number of papers published from 2009 to 2018 (10 years) due to the increasing number of publications and dissemination of ML in public health; (ii) identify the journals with the greatest number of papers; (iii) determine which techniques, programming languages and software tools are most widely used in the field of DM applied to public health; (iv) identify which countries and databases were targeted by these studies; (v) analyse which public health classes were tackled by these papers and (vi)identify which papers were most frequently cited in the literature.

Public health

Any SM

Bibliometric

250

Sarker 2019 [60]

Mining social media for prescription medication abuse monitoring: a review and proposal for a data-centric framework

To present a methodological review of social media-based PM abuse or misuse monitoring studies, and to propose a potential generalizable, data-centric processing pipeline for the curation of data from this resource.

Substance misuse

Twitter / Facebook / Reddit

General review

39

Sharma 2016 [61]

Identifying Complementary and Alternative Medicine Usage Information from Internet Resources. A Systematic Review

Identify and highlight research issues and methods used in studying Complementary and Alternative Medicine (CAM) information needs, access, and exchange over the Internet.

CAM

Any SM

Systematic

120

Sharma 2020 [62]

Sentiment analysis of social media posts on pharmacotherapy: A Scoping Review

The aim of this scoping review was to describe the available evidence as it pertains to SA of Social Media specifically about pharmacotherapy. Themes will be generated about the published uses of SA and the real-world implications of the knowledge generated.

Any

Any SM: mostly Twitter

Scoping

10

Sinnenberg 2017 [63]

Twitter as a Tool for Health Research: A Systematic Review

To systematically review the use of Twitter in health research, define a taxonomy to describe Twitter use, and characterize the current state of Twitter in health research.

Health research

Twitter

Systematic

137

Skaik 2020 [64]

Using Social Media for Mental Health Surveillance: A Review

This systematic review aims to analyse the literature on using social media posts to predict mental disorders using ML and NLP methods that could be useful for mental health surveillance and presents the cutting-edge techniques in predictive analysis of suicide ideation and depression at the population-level. It also points at the gaps that need further research from the perspective of the data, the models, and evaluation procedures.

Mental Health

Any SM

General

110

Staccini 2017 [65]

Secondary Use of Recorded or Self-expressed Personal Data: Consumer Health Informatics and Education in the Era of Social Media and Health Apps

To summarize the state of the art during the year 2016 in the areas related to consumer health informatics and education with a special emphasis in secondary use of patient data.

Any

Any SM

Systematic

5

Su 2020 [66]

Deep learning in mental health outcome research: a scoping review

The goal of this study is to review existing research on applications of DL algorithms in mental health outcome research.

Mental Health

SM, EHR, etc

Scoping

57

Tricco 2018 [67]

Utility of social media and crowd-intelligence data for pharmacovigilance: a scoping review

Review the literature regarding using SM conversations for ADR detection

ADR

Any SM

Scoping

70

Vilar 2018 [68]

Detection of drug-drug interactions through data mining studies using clinical sources, scientific literature, and social media

To review datamining as a method of detecting drug-drug interactions

ADR

SM/ EHRs. FAERS, WHO

General review

NS

Wilson 2015 [69]

Using blogs as a qualitative health research tool: A scoping review

To identify how blogs are being used in health research to date and whether blogging has potential as a useful qualitative tool for data collection. Our purpose was to summarize the extent, range, and nature of research activity using blogs.

Any

blogs

Scoping

44

Wong 2018 [70]

Natural Language Processing and Its Implications for the Future of Medication Safety: A Narrative Review of Recent Advances and Challenges

To review methods of identifying adverse events from free text

ADR

SM + EHRs

General review

12

Wongkoblap 2017 [71]

Researching Mental Health Disorders in the Era of Social Media: Systematic Review

To explore the scope and limits of cutting-edge techniques that researchers are using for predictive analytics in mental health and to review associated issues, such as ethical concerns, in this area of research.

Mental health

Various SM

Systematic

48

Yin 2019 [16]

A systematic literature review of machine learning in online personal health data

To systematically review the effectiveness of applying machine learning (ML) methodologies to UGC for personal health investigations.

Any

Any SM: mostly Twitter

Systematic

103

Zhang 2018 [72]

Using Twitter for Data Collection with Health-Care Consumers: A Scoping Review

To provide an overview of previously published literature describing Twitter as a data collection method with health-care consumers and provide researchers with considerations when potentially using this data collection approach.

Any

Twitter

Scoping

17

Zhang 2020 [73]

When Public Health Research Meets Social Media: Knowledge Mapping From 2000 to 2018

Aims to examine research themes, the role of social media, and research methods in social media–based public health research published from 2000 to 2018

Any

Any SM

Review

3419

Zunic 2020 [74]

Sentiment Analysis in Health and Well-Being: Systematic Review

This study aimed to establish the state of the art in SA related to health and well-being by conducting a systematic review of the recent literature. To capture the perspective of those individuals whose health and well-being are affected, we focused specifically on spontaneously generated content and not necessarily that of health care professionals.

Any

Various SM

Systematic

86