Role of Participatory Health Informatics in Detecting and Managing Pandemics: Literature Review - Thieme Connect

Page created by Linda Schultz
 
CONTINUE READING
Published online: 2021-04-21

    © 2021                          IMIA and Georg Thieme Verlag KG

    Role of Participatory Health Informatics
    in Detecting and Managing Pandemics:
    Literature Review
    Elia Gabarron1*, Octavio Rivera-Romero 2*, Talya Miron-Shatz3, 4, Rebecca Grainger5,
    Kerstin Denecke6
    1
       Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway
    2
       Department of Electronic Technology, Universidad de Sevilla, Spain
    3
       Faculty of Business Administration, Ono Academic College, Israel
    4
       Winton Centre for Risk and Evidence Communication, Cambridge University, England
    5
       Department of Medicine, University of Otago, Wellington, New Zealand
    6
       Institute for Medical Informatics, Bern University of Applied Sciences, Bern, Switzerland

        Summary                                                               IEEE Xplore, ACM (Association for Computing Machinery) Digital     vented reaching firm conclusions about the utility of PHI in de-
        Objectives: Using participatory health informatics (PHI) to detect    Library, and Cochrane Library. Data from studies fulfilling the    tecting and monitoring these disease outbreaks. For others, e.g.,
        disease outbreaks or learn about pandemics has gained interest        eligibility criteria were extracted and synthesized narratively.   COVID-19, social media and online search patterns corresponded
        in recent years. However, the role of PHI in understanding and        Results: Out of 417 citations retrieved, 53 studies were           to disease patterns, and detected disease outbreak earlier than
        managing pandemics, citizens’ role in this context, and which         included in this review. Most research focused on influenza-like   conventional public health methods, thereby suggesting that PHI
        methods are relevant for collecting and processing data are still     illnesses or COVID-19 with at least three papers on other epi-     can contribute to disease and pandemic monitoring.
        unclear, as is which types of data are relevant. This paper aims to   demics (Ebola, Zika or measles). The geographic scope ranged
        clarify these issues and explore the role of PHI in managing and      from global to concentrating on specific countries. Multiple       Keywords
        detecting pandemics.                                                  processing and analysis methods were reported, although often      Epidemics, public health surveillance, social media
        Methods: Through a literature review we identified studies that       missing relevant information. The majority of outcomes are
        explore the role of PHI in detecting and managing pandemics.          reported for two application areas: crisis communication and       Yearb Med Inform 2021:
        Studies from five databases were screened: PubMed, CINAHL             detection of disease outbreaks.                                    http://dx.doi.org/10.1055/s-0041-1726486
        (Cumulative Index to Nursing and Allied Health Literature),           Conclusions: For most diseases, the small number of studies pre-

    1 Introduction                                                            time delays. In the last 20 years, the use of
                                                                              journalistic and other unofficial online in-
                                                                                                                                                     PHI is a multidisciplinary field that uses
                                                                                                                                                 information technology as provided through
    Detecting the spread of infection in an                                   formation sources for epidemic intelligence                        the web, smartphones, or wearables to in-
    epidemic allows health systems and                                        has gained interest. News aggregators such                         crease participation of individuals in their
    governments to implement timely public                                    as HealthMap [2] or MediSys [3] collect                            care process and to enable them in practicing
    health interventions. The term ‘epidemic                                  online news and information from websites                          self-care and shared decision-making [5]. PHI
    intelligence’ refers to “all the activities                               or blogs to provide an overview of the                             deals with the resources, devices, and methods
    related to early identification of potential                              worldwide disease situation for the purpose                        required to support active participation and
    health threats, their verification, assessment                            of real-time surveillance. Data are also col-                      engagement of the stakeholders, such as social
    and investigation in order to recommend                                   lected from search engines or messages on                          media [5]. Goals to be achieved through PHI
    public health measures to control them”                                   social media, such as Twitter. These data,                         include improving and maintaining health and
    [1]. Traditional epidemic intelligence sys-                               which are now being utilized as a form                             well-being; improving the healthcare system
    tems mainly use clinical epidemiological                                  of participatory health informatics (PHI),                         and health outcomes; sharing experiences;
    data, such as reports from hospitals and                                  may provide a complementary source of                              achieving life goals; and gaining self-edu-
    healthcare providers, which often lead to                                 information to traditional sources such as                         cation [6]. Beyond eliciting epidemic intelli-
                                                                              health system, thereby helping to detect and                       gence, participatory health is used to engage
                                                                              predict the volume and spread of infection                         or inform citizens of disease outbreaks or
    *
          Contributed equally and share first authorship                      in epidemics [4].                                                  governmental activities related to an outbreak.

    IMIA Yearbook of Medical Informatics 2021
Role of Participatory Health Informatics in Detecting and Managing Pandemics: Literature Review

    The COVID-19 pandemic has highlight-            OR Crimean-Congo haemorrhagic fever                      studies or did not report results (i.e., study
ed the potential role of PHI in pandemics.          OR Ebola virus disease OR Hendra virus                   protocols, opinion, frameworks or review
For example, during the COVID-19 crisis             infection OR Influenza OR Lassa fever                    papers); or were published in languages
Chinese central government agencies used            OR Marburg virus disease OR Meningitis                   other than English.
social media to promote citizen engagement          OR MERS-CoV OR Monkeypox OR                                 The selected articles were divided among
[4, 7]. Other studies during the COVID-19           Nipah virus infection OR coronavirus                     three authors (EG, KD, OR) for data ex-
pandemic have used online data to assess            OR 2019-nCoV OR Covid OR Plague OR                       traction. We extracted: 1) Disease/epidemic,
citizens‘ risk perceptions or attitudes and         Rift Valley fever OR SARS OR Smallpox                    settings and country; 2) Objective, data
opinions related to the pandemic [8, 9].            OR Tularaemia OR Yellow fever OR Zika                    source, type of information provided, user
    Given these research developments, we           virus disease.                                           group, epidemic and considered region; 3)
aim to examine which methods and features         • Keywords related to participatory                        Data preprocessing, analysis techniques and
of PHI are considered, and which roles PHI          health: Social media OR social network                   features; 4) Outcome and reasons that limit
plays in assessing, managing and controlling        site OR online social network OR online                  the outcome. Data were abstracted into a
pandemics. Furthermore, we aimed to iden-           community OR Facebook OR Twitter OR                      Microsoft Excel spreadsheet standardized
tify and summarize the research about what          YouTube OR Instagram OR WhatsApp                         for this review, piloted and refined with 10
roles citizens play in this process. Specifi-       OR mHealth OR mobile health OR                           preliminary papers. The selected articles
cally, we aim to use a literature search and        e-health OR ehealth OR mobile applica-                   were included in the narrative synthesis.
synthesis to address the following research         tions OR apps.
questions:                                        • Keywords related to treatment / inter-
• Which epidemics have been studied by              ventions: Management OR Detection
    means of a PHI approach to disease sur-
    veillance?
                                                    OR surveillance OR Infoveillance OR
                                                    infodemic.
                                                                                                             3 Results
• Which tools of PHI and which methods                                                                       3.1 Sample
    are used to analyze citizens‘ contribu-                                                                  The database search retrieved 461 records,
    tions?
• Does citizen input correspond with epi-
                                                  2.2 Eligibility                                            with 417 records remaining after duplicate
                                                  We uploaded all search references to Rayyan                removal; 53 papers met the inclusion criteria
    demic data?                                                                                              after full text review and were included in
• What are the barriers to the use of social      (https://rayyan.qcri.org) and removed dupli-
                                                  cates. To assess the eligibility of the articles,          the qualitative synthesis (Figure 1). A sum-
    media for pandemic detection and man-                                                                    mary of the included studies can be found
    agement?                                      in a first step, all titles and abstracts were
                                                  divided among two reviewers (EG, OR)                       in Appendix 2.
                                                  where each reviewer looked at half of the
                                                  papers. After title and abstract screening, in
2 Methods                                         a second step, full text of all potentially eli-           3.2 Which Epidemics Have Been
                                                  gible articles was obtained, and articles were
We undertook a literature review to identify      reviewed to confirm their eligibility by two               Studied?
studies that help in answering the listed ques-   reviewers independently (EG, OR). Conflicts                The 53 papers considered various epidemics;
tions above. The Preferred Reporting Items        were discussed with a third reviewer (KD)                  influenza-like illnesses (27/53; 51%) and
for Systematic Reviews and Meta-Analyses          until consensus was reached.                               COVID-19 (11/53; 19%) were the most
(PRISMA) criteria guided the conduct and                                                                     frequently studied epidemics (Appendix 3).
reporting of the review [10].                                                                                Almost all studies analyzed retrospectively
                                                                                                             collected social media data where contrib-
                                                  2.3 Inclusion and Exclusion Criteria                       utors were unaware of the usage of their
                                                  Articles were included if they: a) focused on              content for the purpose of epidemic surveil-
2.1 Search Strategy                               epidemics, disease outbreaks or any of the                 lance. In all these papers, the data sets were
The full search was carried out on June 10th,     20 pandemic diseases recognized by WHO                     created based on predefined keywords such
2020 (see Appendix 1). The search covered         (https://www.who.int/emergencies/diseas-                   as example tweets collected using keywords
PubMed; ACM Digital Library; IEEE                 es/en/); b) addressed the role or features of              like flu, influenza etc. (e.g., [11,12]). Only
Xplore; CINAHL and Cochrane library               social media, mobile health, or other PHI; c)              one study was conducted prospectively [13]
using the following keywords:                     were primary studies reporting results; and                with data actively generated by users.
• Keywords related to epidemics or                d) were in the English language. Articles                     About a quarter (14/53; 26%) of the pa-
   pandemics: Epidemics (MeSH) OR Pan-            were excluded if they: did not deal with                   pers had a global scope, with 10/53 (19%)
   demics (MeSH) OR Disease Outbreaks             epidemics, outbreak diseases or pandemics;                 focused on the USA and Canada, and 7/53
   (MeSH) OR Chikungunya OR Cholera               did not deal with PHI; were not primary                    (13%) on China. Australia and Malaysia

                                                                                                                           IMIA Yearbook of Medical Informatics 2021
Gabarron et al.

                                                                                                                 A preprocessing stage that prepares data
                                                                                                             to be analyzed is required when automated
                                                                                                             analyses techniques are used. Preprocessing
                                                                                                             techniques clean data and transform them
                                                                                                             to the predictable and analyzable format
                                                                                                             required by analysis algorithms. Examples
                                                                                                             of common related techniques in natural
                                                                                                             language processing are lowercasing, stem-
                                                                                                             ming, lemmatization, stop word removal,
                                                                                                             and normalization. Preprocessing is crucial
                                                                                                             when data sources present a dynamic and
                                                                                                             specific language like those used in social
                                                                                                             networks. Reporting the data preprocessing
                                                                                                             techniques used in automated analysis is rel-
                                                                                                             evant for research reproducibility. Thirteen
                                                                                                             studies (13/53; 25%) did not require a data
                                                                                                             preprocessing stage for two main reasons
                                                                                                             [11, 13, 18, 25, 26, 28, 30, 39, 41, 58, 59,
                                                                                                             61, 62]: they were based on quantitative
                                                                                                             data such as web search index, or authors
                                                                                                             followed a manual approach to analyze the
                                                                                                             collected data. Although a preprocessing
                                                                                                             stage was required in the remaining included
                                                                                                             studies, four of them (4/53; 7.5%) did not
                                                                                                             report any information regarding this stage
                                                                                                             [14, 17, 29, 60].
                                                                                                                 A total of 36 studies reported data
                                                                                                             preprocessing. Among those, data prepro-
                                                                                                             cessing and filtering was reported in 19
                                                                                                             studies (19/40; 48%). Several approaches to
Fig. 1 PRISMA Flowchart of the paper selection procedure.                                                    filtering data were reported. Nineteen of the
                                                                                                             studies reporting preprocessing information
                                                                                                             included a data preparation stage (19/40;
                                                                                                             48%). Information regarding data cleaning
were considered a region in three papers                    3.3 Which Tools of PHI Were                      was the most frequently reported. However,
(6%). Japan, Madagascar, the Netherlands,                                                                    many of these studies reported vaguely about
and Italy were the focus of two papers each                 Examined, and Which Methods                      data preparation that did not include details
(4%). Greece or the UK were target locations                Were Used?                                       on specific techniques and tools used. Data
of one paper (2%). Just over one in ten papers              Social media was the data source in the ma-      aggregation was implemented in 14 studies
(6/53, 11%) did not specify a region.                       jority of the included studies (49/53; 92%).     (14/40; 35%) in which data from several
   The objectives of the 53 studies were                    Among those, Twitter was the most common-        sources such as Google Trends data, Twitter,
classified into six main categories: analyzing              ly used channel (34/53; 64%), followed by        Web search indexes, or official Centre for
contents related to epidemics (i.e., reactions,             Sina Weibo (10/53, 19%) (Table 1). Other data    Disease control (CDC) data were combined
opinion, attitudes, quality of the information,             sources were official disease outbreak data      on a weekly or daily basis. See Appendix 6
sentiment analysis, distribution patterns,                  (15/53; 28%), Google Trends (6/53; 11%),         for further details.
etc.); detecting disease; disease monitoring                and Internet search engines (6/53; 11%).             Regarding the analysis techniques, the
or disease surveillance; comparing number                       More than two thirds of the included stud-   most common analyses in the included
of posts with official disease numbers; pre-                ies provided information about the content       studies were the correlation analysis (23/53;
dicting future epidemics; and tracing con-                  of social media posts (37/53; 70%). The next     43%), followed by spatiotemporal analysis
tacts (Appendix 4). The three most common                   most common types of provided information        using various techniques (22/53; 42%), and
objectives were analyzing content related to                were the reporting of spatiotemporal data        classification problem (14/53; 26%) (Table 2).
the epidemic (20/53; 38%), detecting disease                from social media, found in 14 papers (26%);         When it comes to features used in the
(12/53; 23%), and monitoring or surveillance                and Internet search queries in 12 papers         analysis, spatiotemporal features were the
(10/53; 19%).                                               (23%) (Appendix 5).                              most common data used in the analysis of

IMIA Yearbook of Medical Informatics 2021
Role of Participatory Health Informatics in Detecting and Managing Pandemics: Literature Review

Table 1 Data source used by the studies included in the review (n=53)                                                               Some papers mentioned a positive effect
                                                                                                                                 of using social media for crisis communica-
                                                                                                                                 tion. Posting of latest news and information
    Data source                                       References using this data source                  Number (%) of           on how the government is handling the
                                                                                                         papers citing this
                                                                                                         data source
                                                                                                                                 pandemic can affect citizens’ engagement
                                                                                                                                 [7, 59], thereby demonstrating that posting
    Social media                                      [7,11,12,14-58]                                    49 (92%)                can be valuable for citizen education [18].
        Twitter                                       [11,12,15,16,20,23,25–30,32–38,40,42–              34 (64%)                Other papers question the usefulness or
                                                      52,55,57,59]                                                               effectiveness of social media for commu-
        Sina Weibo                                    [7,17–19,22,24,31,39,53,54]                        10 (19%)                nication on an epidemic [29, 32, 52] since
        Baidu                                         [17,18,31,39]                                      4 (7.5%)                there are discrepancies between the interest
        Social media (in general)                     [17,21,56,59]                                      4 (7.5%)                or concerns of the population in general
        Coosto (social media monitoring tool)         [32,41]                                            1 (2%)
                                                                                                                                 and the provided information by public
                                                                                                                                 health authorities. Misinformation and false
        Facebook                                      [32]                                               1 (2%)
                                                                                                                                 alarms were mentioned in two papers [48,
        WeChat                                        [14]                                               1 (2%)                  58] (Table 3).
        Wikipedia                                     [28]                                               1 (2%)
        YouTube                                       [58]                                               1 (2%)
    Official disease outbreak data (CDC,              [12,17,18,20,21,24,29,31,38,39,41,46,59–61]        15 (28%)
    WHO, laboratory,… etc)                                                                                                       3.5 Barriers to the Use of Social
    Google Trends                                     [11,12,20,39,41,55]                                6 (11%)                 Media for Pandemic Detection and
    Internet search / search engines                  [17,23,26,28,61,62]                                6 (11%)                 Management
    News, online news                                 [18,20,26,56,59]                                   5 (9%)
                                                                                                                                 In the included papers, we identified four
                                                                                                                                 groups of issues that impact the outcome of
    Surveys (any type)                                [13,21]                                            2 (4%)                  PHI for detecting or retrieving knowledge on
    Spinn3r (Web and social media                     [60]                                               1 (2%)                  pandemics. These are usage of app data, data
    indexing service)                                                                                                            collection, behavior of individuals, and anal-
                                                                                                                                 ysis and interpretation of social media data.
*
     Note: some studies included more than one data source                                                                           When apps are used for disease surveil-
                                                                                                                                 lance, privacy issues and concerns about
                                                                                                                                 personal confidentiality can hamper the data
                                                                                                                                 usage. Authorizing social media apps to use
the included studies. Thirty-four studies                               3.4 Does Citizen Input Correspond                        personal data including personal informa-
used time stamp or time series in the                                                                                            tion, activity status data, and spatiotemporal
analysis (34/53; 64%). Most of the studies                              With Epidemic Data?                                      data is still not acceptable [14]. Another
used the location information to filter data                            Table 3 summarizes the reported outcomes                 barrier relates to data collection. Specifical-
out in the collection stage, but only 16                                by disease. Several papers reported correla-             ly, not all data generated on social media is
of them compared results from different                                 tions between social media data related to               available for analysis. Several research pa-
geolocation (areas, cities, or countries)                               COVID-19, influenza-like illnesses, mea-                 pers used the Twitter API which only allows
(16/53; 30%).                                                           sles, MERS-CoV, MRSA and the plague                      a collection of a subset of the data posted on
   Twenty-three of the included studies                                 and official case numbers [11, 30, 41, 53,               Twitter, which may have resulted in leaving
analyzed features extracted from post                                   61, 62]. Results regarding the timeliness of             relevant tweets unconsidered [12, 33, 34].
contents. Seven of those studies analyzed                               the detected events, i.e., whether PHI can               Only one paper considered popular tweets,
words or keywords (7/53; 13%). Six stud-                                help in detecting outbreaks ahead of official            i.e., those that were re-tweeted many times
ies used word frequencies or the Term                                   statistics were rare and contradictory. For              [52], which means that these tweets are not
Frequency-Inverse Document Frequency                                    conjunctivitis and COVID-19, two papers                  representative of all tweets.
(TF-IDF) values (6/53; 11%). Five studies                               (3.8%) reported that social media data can                   Another bias may arise from censorship
used “bag of words” in their analysis (5/53;                            detect outbreaks as early as, or earlier than,           in countries like China, thus limiting the
9%). Other features such as linguistic                                  the official reporting mechanisms [53, 62].              completeness of the data [22]. Data col-
characteristics were used in a single study.                            For Ebola, one paper concluded it is un-                 lection from Google Trends only provides
Further details about features used in the                              likely that online surveillance provides an              relative and not absolute values, thus hin-
analyses are reported in Appendix 7.                                    alert more than a week before the official               dering the possibility of further refining and
                                                                        announcement [47].                                       processing them [61]. Finally, data related to

                                                                                                                                               IMIA Yearbook of Medical Informatics 2021
Gabarron et al.

Table 2 Analysis techniques used in included papers (n=53)                                                                      disease surveillance, such as geolocation
                                                                                                                                or other user data, might be unavailable
    Analysis                          Algorithm or technique (References using this technique)             Number of            or imprecise (e.g., when using search logs
                                                                                                           papers citing this   from Google or access rates of Wikipedia
                                                                                                           technique            pages) [28, 62].
    Correlation analysis              Spearman ([11,18,31,33,39,54])                                       23 (43%)                 The third group of problems is related
                                      Pearson ([19,20,37,38,43,44,48,49,55,60])                                                 to the behavior of individuals, or citizens´
                                      unspecified ([12,22,25,30,50,51,61])                                                      input. When a disease (e.g., influenza) be-
    Spatiotemporal analysis                                                                                                     comes a hot topic, people do not post about
            Time series analysis      FDR [23], DBNM [24], KLD [47], JI [51], GCt [53], DFt [53], ARIMAX   17 (32%)             it [15]. In contrast, when celebrities are con-
                                      [55], ESA [57]                                                                            cerned about a disease, there are more people
                                      unspecified ([13,14,30,35,38,43,49,50,61,62])                                             posting about it [62] which may generate
                Seasonal analysis     SARIMA [17], SDA [17], LiR [17], BCP [28], SH-ESD [42], STL [54]     5 (9%)               false concern. Public awareness of disease
                                      unspecified [48]                                                                          surveillance methods using social media
    Classification
                                                                                                                                could influence behavior and consequently
         Relevance classification     SVM ([15,16,27,35,36,38,44,49,53])                                   13 (25%)             lead to false reporting [16].
                                      LR ([35,46,55])                                                                               The fourth group of issues concerns
                                      NB ([36,42])                                                                              the analysis and interpretation of data, i.e.,
                                      LiR ([46])                                                                                data processing for the purpose of disease
                                      ME ([48])                                                                                 surveillance. First of all, when considering
                                      RF [53], DT ([53]), ET ([53]), KNN ([53]), MP ([53])                                      free text as a data source, misspellings,
          Emotions classification     NB [47]                                                              1 (2%)               abbreviations, and use of slang hamper
    Detection                                                                                                                   processing [27]. Second, social media data
             Topic Identification     LDA ([11,27,44,54])                                                  8 (15%)              is dynamic: new words can appear (e.g., new
                                      BTM ([33])                                                                                slang referring to a disease). This requires
                                      RF ([54])                                                                                 retraining classifiers so that new vocabulary
                                      Km ([57])                                                                                 and new anomalies in social signals can be
                                      unspecified ([40,51])                                                                     learned [16, 27].
           Symptom Recognition        LDA ([21])                                                           1 (2%)
                                      LR ([21])
               Language detection     Unspecified ([32])                                                   1 (2%)
    Prediction/Estimation             LiR ([12,21,22,37,38,46])                                            8 (15%)
                                                                                                                                4 Discussion
                                      MRM ([30,46,61])
                                                                                                                                4.1 Summary of Findings
    Sentiment analysis                NB ([34])                                                            5 (9%)               This literature review and synthesis con-
                                      ME ([34])
                                      DLMC ([34])
                                                                                                                                firms that PHI has been used to address a
                                      SSA ([47])                                                                                wide variety of public health issues relating
                                      unspecified ([7,47,50])                                                                   to pandemics. Most literature has focused
                                                                                                                                on influenza or influenza-like illness or,
    Other analysis
                                                                                                                                in 2020, COVID-19. The vast majority of
            Qualitative analysis      Thematic analysis ([59])                                             2 (4%)
                                      Classification ([31])
                                                                                                                                studies have used data from social media
                                                                                                                                posts or web search patterns with a wide
        Link analysis, Influence      GNA ([60])                                                           1 (2%)
                                                                                                                                variety of data analysis techniques. For
               analysis, and/or
      Communities identification                                                                                                most diseases, the small number of studies
                                                                                                                                identified means that firm conclusions
*
    Note: some studies reported more than one type of information                                                               about the utility of PHI in detecting and
FDR: False Discovery Rate; DBNM: Dynamic Bayesian Network Model; KLD: Kullback-Leibler Divergence;                              monitoring these disease outbreaks cannot
JI: Jaccard Index; GCt: Granger Causality Test; DFt: Dickey-Fuller tests; ARIMAX: AutoRegressive Integrated
Moving Average model with eXogenous covariates; ESA: Exponential Smoothing Algorithm; SARIMA: Seasonal
                                                                                                                                be reached. In comparison, the extensive
AutoRegressive Integrated Moving Average; SDA: Seasonal Decomposition Analysis; LiR: Linear Regression;                         literature on influenza and COVID-19 (in
BCP: Bayesian Change Point; SH-ESD: Seasonal-Hybrid Extreme Studentized Deviate; STL: Seasonal-Trend                            spite of the fact that the literature search
decomposition based on Loess; SVM: Supported Vector Machine; LR: Logistic Regression; NB: Naïve Bayes;                          ended in June 2020) provides valuable
ME: Maximum Entropy; RF: Random Forest; DT: Decision Tree; ET: Extra Tree; KNN: K nearest neighbors;
MP: Multilayer Perceptron; LDA: Latent Dirichlet Allocation; BTM; Biterm Topic Model; Km: K-means; MRM:
                                                                                                                                insights into the potential for PHI to pro-
Multivariable Regression Model; DLMC: Dynamic Language Model Classifier; SSA: Stanford Sentiment Analyzer;                      vide additional, more timely or efficient
GNA: Girvan-Newman Algorithm.                                                                                                   pandemic monitoring.

IMIA Yearbook of Medical Informatics 2021
Role of Participatory Health Informatics in Detecting and Managing Pandemics: Literature Review

Table 3 Reported outcomes related to PHI per epidemic in the reviewed papers                                                              tributed across the population. For example,
                                                                                                                                          a recent secondary analysis of survey data
  Epidemic                      Outcome                                                                                                   revealed that women were more likely to
                                                                                                                                          post on COVID-19 than men; that black,
  Conjunctivitis                PHI (Google search data) enable earlier outbreak detection. [62]
                                                                                                                                          Latino, and other non-white males were
  COVID-19                      PHI (number of tweets) correlates positively with daily case numbers [19,22,39,54]                        more likely to post on the topic than whites,
                                PHI (Reports of symptoms and diagnosis of COVID-19 on social media) enabled to predict daily case         and that people age 65 and above were
                                counts up to 14 days ahead of official statistics [53]                                                    more likely to post than younger people
                                Value for communication and information provision: Media richness negatively predicts citizen             [68]. However, existing analysis tools take
                                engagement through government social media, but dialogic loop facilitates engagement. Information         this into account, and use the frequency
                                relating to the latest news about the crisis and the government’s handling of the event positively        of posting as a variable in and of itself.
                                affects citizen engagement through government social media [7]
                                                                                                                                          Research has yet to study the association
  Dengue                        Social media user trust in information shared by health professionals and others in their online social   between differential frequency of posting,
                                networks [40]                                                                                             and outbreak detection.
  Ebola                         PHI did not enable to earlier outbreak detection [26].                                                        It should also be noted that PHI is varied
                                Analysis of emotions in social media microblogging data (Twitter) may be utilized as a source of          and, as such, some types of PHI are better
                                evidence for disease outbreak detection and monitoring [47].                                              at answering specific questions than oth-
  Influenza, Seasonal           Outbreak detection:
                                                                                                                                          ers. For example, search data on the CDC
  flu, Influenza-like            Partially positive correlation between local influenza-like illness percentages and tweet rates [16]
                                                                                                                                          website was better and faster at detecting
  illnesses, Avian               Positive correlation between the number of tweets, search volume or frequent daily discussions          influenza trends on a national, but not state
  influenza                        and daily case numbers [20,24,25,27,31,35,36,38,43,44,49,50,56,60].                                    level [69]. There is a need to clarify which
                                 PHI (Twitter) enabled earlier detection of outbreaks [42]. Differences in the degree of sensitivity     questions are best suited to be answered by
                                   exist between social media: A high sensitivity of 92% was found for Google and a low sensitivity       which source of PHI. The same holds true
                                   of 50% was calculated for Twitter. Wikipedia had the lowest sensitivity of 33% [28].                   for analysis techniques. As individuals gen-
                                 PHI led to false alarms: Twitter flu surveillance erroneously indicated a typical flu season during     erate increasingly more PHI, and its use for
                                   2011-2012.                                                                                             detecting and managing pandemics persists,
  Measles                       Value for communication and information provision: Social media provides insight into the opinions        newer, more refined tools and analyses are
                                regarding the pandemic that are at a certain moment salient among the public [59]                         required to assess how PHI best assists in
                                There is a positive correlation between the weekly number of social media messages and the weekly         promoting health and, along with that, what
                                number of online news articles [59]                                                                       its characteristics are.
  MERS-CoV                      High correlations between social media data and the number of confirmed MERS cases. High                      Finally, recent work analyzing Tweets to
                                correlations between social media data and the number of quarantined cases [11]                           capture public sentiment about COVID-19,
  Methicillin-resistant
                                                                                                                                          identified five dominant themes: health care
                                PHI enabled rapid identification of potential MRSA outbreaks [41]
  Staphylococcus                                                                                                                          environment, emotional support, business
  aureus (MRSA)                                                                                                                           economy, social change, and psychological
                                                                                                                                          stress [70]. These are not captured in elec-
  Plague (bubonic               Statistically significant positive correlations were found between Google trends search data and          tronic health records, and yet they provide
  plague, pneumonic             confirmed, suspected, and probable cases [30,61]
  plague)
                                                                                                                                          invaluable insights into population needs
                                                                                                                                          and concern which should receive public
  Zika                          Value for communication and information provision: Social media is unlikely to be useful or effective     health attention. Since some papers claim
                                for communication on an epidemic; There are discrepancies between what the general public was             that early alerts cannot be achieved from
                                most interested in, or concerned about, and what public health authorities provided [29,32,52]            social media, more information needs to be
                                                                                                                                          collected on various diseases to understand
                                                                                                                                          to what degree patterns generalize.

4.2 Epidemics and PHI                                                  probably facilitated fast developments                             4.3 PHI Tools, Methods and
                                                                       in relation to the COVID-19 emergency.
Although most of the articles included                                 Likewise, PHI research on COVID-19 may                             Citizens´ Input
in our review focused on influenza-like                                be applicable for detecting and managing                           Analysis of social media and web searches
illnesses and COVID-19, other epidem-                                  future epidemics.                                                  shows that posting and search frequencies
ics have also been considered in PHI                                       PHI is an imperfect source of data with                        have consistent positive correlations with
research (i.e., Ebola, Zika, Dengue, etc.).                            its own biases such that its content and                           official disease incidence numbers in the
PHI research on previous pandemics has                                 frequency of posting are not equally dis-                          cases of influenza, COVID-19 and for the

                                                                                                                                                        IMIA Yearbook of Medical Informatics 2021
Gabarron et al.

related MERS Co-V. Most recent studies             The analysis of social media posts can         data characteristics, several processing
in COVID-19 suggest that analysis of these      also be useful for assessing the effectiveness    stages are required to prepare data to be
data may even predict an increase in case       of government or health authority communi-        used by analysis models. However, artifi-
numbers ahead of official health system         cation with their populations. Again, issues      cial intelligence supporting participatory
generated data [53]. Previous literature        of how representative social media users are      health is still in its infancy [78]. Although
synthesis has also concluded that online        of the wider population remain unresolved.        the most common application of artificial
social networks generate data that can          At present, each analysis requires a bespoke      intelligence in participatory health is the
track pandemic development [63] and             approach to data collection and analysis.         secondary analysis of social media data
other disease outbreaks [64]. As these          It would seem likely that this use of social      [78], there are several challenges that must
data are created by citizens in their daily     media and web browsing data will comple-          be addressed [78]. Additionally, a combina-
lives and do not incur additional data col-     ment traditional research approaches with         tion of epidemiologic expertise, analytical
lection costs, they therefore represent an      the advantages of more immediacy of data.         expertise, and advanced computational
attractive additional source of information                                                       skills are required to interpretate data for
to complement traditional disease surveil-                                                        pandemic surveillance [77].
lance data. The timeliness of PHI provides      4.4 Barriers of Using Social Media
other significant benefits, such as noting a
certain level of awareness of and concern       During Pandemics                                  4.5 Limitations
with COVID-19, which epidemiological            We found several barriers of using social
                                                media for detecting or retrieving knowledge       One limitation of our work is that the
records do not convey. Further studies
                                                on pandemics: data privacy and concerns           data collection ended on June 10th, 2020,
validating these observations are a high
                                                about personal confidentiality, data collec-      while the COVID-19 pandemic continued
priority, particularly as the COVID-19
                                                tion (technical limitation like the Twitter       to evolve. Thus, for example, we did not
pandemic unfolds.
                                                API data sample, lack of data completeness,       include a study published in August 2020
    Since citizen behavior and input may
                                                censorship, or potential inaccuracies),           on how media coverage influences Google
change as the pandemic evolves, these cor-
                                                behavior trends, and complexity of data           search trends, so that they cannot be as-
relations between infection incidence and
                                                analysis and interpretation.                      sumed to only reflect people’s health [66].
secondary data sources may not remain
                                                    Data privacy and personal confidenti-         Likewise, we did not include a study on
stable. On the other hand, this might reflect
                                                ality are two of the most relevant issues of      natural language processing that revealed
psychological responses to the pandemic
                                                using social media for participatory health       changes in large mental health groups (e.g.,
which are related to, but not the same
                                                purposes [72, 73]. Included studies reported      SuicideWatch and Depression) on Reddit
as, the actual prevalence of COVID-19.
                                                privacy and confidentiality barriers showing      during the COVID-19 pandemic [67]. This
Furthermore, lack of correlation between
                                                that there are still unresolved ethical, legal,   novel, illuminating work was published
disease incidence and media trends might
                                                and technological questions. Therefore, new       after our inclusion date. Regardless, we
result from adaptation and familiarity,
                                                models of responsible and transparent data        believe it was important to end the search
leading, for example, to fewer information
searches (e.g., on Wikipedia).                  collection and treatment addressing these         at that date so that COVID-19 was still in-
    The requirements for data cleaning          questions are needed, especially in public        cluded in the review and so that the results
and analytic methods, which may need            health emergencies [74]. Limitations in           of the review are released when COVID-19
to rapidly evolve, may present additional       data collection from social media sources         is still of relevance, so they can be utilized
barriers to this approach to disease sur-       is an issue that is commonly reported in          by health officials and researchers.
veillance being widely adopted in multiple      the scientific literature [75, 76]. The social
geographic settings. The availability of        influence that an individual’s posts on so-
standardized surveillance approaches and        cial media may have on others’ behaviors            In order to move the field of PHI forward for
efficient development of effective algo-        is also reported as a relevant aspect to be         detecting and managing future pandemics
rithms have previously been identified as       considered in digital surveillance systems          we recommend:
barriers to use of social media in surveil-     using social media [77]. Simple methods              Finding the best way to deal with the
lance of illicit drug use [65]. Furthermore,    are commonly used to collect data from                current barriers to fuller impact of PHI
the uncertainties about how representative      social media sources, resulting in a dataset          data (i.e., privacy issues, commercial
data are and if sufficient population cover-    including noise (data not related to specific         practices, governmental practices, etc.)
age is reached remain unresolved.               pandemic). Then, a filtering stage is re-            Clarifying which questions are best suited
    Our synthesis of the outcomes of using      quired to select efficiently the data sample.         to be answered by which source of PHI
PHI in pandemics suggests that analysis of      Both manual and automated filtering are              Creating more refined tools and analyses
social media posting is useful in assessing     commonly used to classify collected data.             is required to assess how PHI best assists
disease-related informational needs, such       Most automated methods are based on                   in promoting health during pandemics]
as reducing vaccination hesitancy [71].         artificial intelligence. Due to social media

IMIA Yearbook of Medical Informatics 2021
Role of Participatory Health Informatics in Detecting and Managing Pandemics: Literature Review

5 Conclusions and                                           Rivera-Romero O, Franco-Martín M, De la Torre-
                                                            Díez I. Suicide Risk Assessment Using Machine
                                                                                                                          Ebola in West Africa: Evidence from the Online
                                                                                                                          Big Data Platform. Int J Environ Res Public Health
Recommendations for Future                                  Learning and Social Networks: a Scoping Review.
                                                            J Med Syst 2020 Nov 9;44(12):205.
                                                                                                                          2016 Aug 4;13(8):780.
                                                                                                                      19. Zhao Y, Cheng S, Yu X, Xu H. Chinese Public‘s
Research                                                6. Syed-Abdul S, Gabarron E, Lau AY, Househ M.
                                                            Chapter 1 - An introduction to participatory health
                                                                                                                          Attention to the COVID-19 Epidemic on Social
                                                                                                                          Media: Observational Descriptive Study. J Med
This paper explored the role of PHI in                      through social media. In: Participatory Health                Internet Res 2020 May 4;22(5):e18825.
                                                            Through Social Media. Academic Press; 2016 Jan            20. Samaras L, García-Barriocanal E, Sicilia MA.
managing and detecting pandemics. We                                                                                      Comparing Social media and Google to detect
                                                            1. p. 1-9.
conclude that PHI provides an unmediated,               7. Chen Q, Min C, Zhang W, Wang G, Ma X, Evans R.                 and predict severe epidemics. Sci Rep 2020 Mar
authentic, and readily available source of                  Unpacking the black box: How to promote citizen               16;10(1):4747.
information that can be highly useful in the                engagement through government social media                21. Daughton AR, Chunara R, Paul MJ. Comparison
                                                            during the COVID-19 crisis. Comput Human                      of Social Media, Syndromic Surveillance, and
detection and management of pandemics.                                                                                    Microbiologic Acute Respiratory Infection Data:
Our findings highlight the ways in which                    Behav 2020 Sep;110:106380.
                                                        8. Lohiniva AL, Sane J, Sibenberg K, Puumalainen T,               Observational Study. JMIR Public Health Surveill
social media can be used as a form of                       Salminen M. Understanding coronavirus disease                 2020 Apr 24;6(2):e14986.
participatory health, to manage and detect                  (COVID-19) risk perceptions among the public to           22. Li J, Xu Q, Cuomo R, Purushothaman V, Mackey T.
pandemics. They also illuminate the barri-                  enhance risk communication efforts: a practical               Data Mining and Content Analysis of the Chinese
                                                            approach for outbreaks, Finland, February 2020.               Social Media Platform Weibo During the Early
ers to fuller impact of such data: some of                                                                                COVID-19 Outbreak: Retrospective Observational
these barriers stem from privacy issues,                    Euro Surveill 2020 Apr;25(13):2000317.
                                                        9. World Health Organization. Coronavirus                         Infoveillance Study. JMIR Public Health Surveill
some from commercial practices such as                      (COVID-19) events as they happen. Geneva:                     2020 Apr 21;6(2):e18700.
providing relative but not absolute rankings                World Health Organization; 2020:1-0. Available            23. Yom-Tov E, Borsa D, Cox IJ, McKendry RA.
                                                                                                                          Detecting disease outbreaks in mass gatherings
of trends, while others are rooted in govern-               from: https://www.who.int/emergencies/diseases/
                                                                                                                          using Internet data. J Med Internet Res 2014 Jun
mental practices such as censorship. There                  novel-coronavirus-2019/interactive-timeline/
                                                                                                                          18;16(6):e154.
                                                        10. Liberati A, Altman DG, Tetzlaff J, Mulrow C,
is a series of questions that future studies                Gøtzsche PC, Ioannidis JP, et al. The PRISMA              24. Huang J, Zhao H, Zhang J. Detecting flu trans-
could aim to answer: What are the issues                    statement for reporting systematic reviews and                mission by social sensor in China. In: 2013 IEEE
that hamper citizens’ contribution and the                                                                                International Conference on Green Computing and
                                                            meta-analyses of studies that evaluate health care
                                                                                                                          Communications and IEEE Internet of Things and
value of their contribution, and what can                   interventions: explanation and elaboration. J Clin
                                                                                                                          IEEE Cyber, Physical and Social Computing 2013
facilitate their contribution? To what extent               Epidemiol 2009 Oct;62(10):e1-34.
                                                                                                                          Aug 20. IEEE; 2013. p. 1242-7
                                                        11. Shin SY, Seo DW, An J, Kwak H, Kim SH, Gwack
are citizens invited to contribute to outbreak              J, et al. High correlation of Middle East respiratory     25. Lee B, Yoon J, Kim S, Hwang BY. Detecting social
detection and crisis communication using                                                                                  signals of flu symptoms. In: 8th International Con-
                                                            syndrome spread with Google search and Twitter
                                                                                                                          ference on Collaborative Computing: Networking,
PHI? Given that citizen input is instru-                    trends in Korea. Sci Rep 2016 Sep 6;6:32920.
                                                                                                                          Applications and Worksharing (CollaborateCom)
mental in early detection of diseases and is            12. Comito C, Forestiero A, Pizzuti C. Improving
                                                                                                                          2012 Oct 14. IEEE; 2012. p. 544-5.
                                                            influenza forecasting with web-based social data.
crucial in detection of mental distress re-                 In: 2018 IEEE/ACM International Conference on
                                                                                                                      26. Yom-Tov E. Ebola data from the Internet: An oppor-
sulting from diseases, governments should                                                                                 tunity for syndromic surveillance or a news event?
                                                            Advances in Social Networks Analysis and Mining
strive to invite such input in a standardized,                                                                            In: Proceedings of the 5th international conference
                                                            (ASONAM) 2018 Aug 28; IEEE; 2018. p. 963-70.
                                                                                                                          on digital health 2015; May 18. p. 115-9.
anonymized manner.                                      13. Moberley S, Carlson S, Durrheim D, Dalton C.
                                                                                                                      27. Kagashe I, Yan Z, Suheryani I. Enhancing Seasonal
                                                            Flutracking: Weekly online community-based
                                                                                                                          Influenza Surveillance: Topic Analysis of Widely
                                                            surveillance of influenza-like illness in Australia.
                                                                                                                          Used Medicinal Drugs Using Twitter Data. J Med
                                                            2017 Annual Report. Commun Dis Intell 2019;43.                Internet Res 2017;19:e315
References                                              14. Wang S, Ding S, Xiong L. A New System for
                                                            Surveillance and Digital Contact Tracing for
                                                                                                                      28. Sharpe JD, Hopkins RS, Cook RL, Striley CW.
                                                                                                                          Evaluating Google, Twitter, and Wikipedia as Tools
1. Kaiser R, Coulombier D, Baldari M, Morgan D,             COVID-19: Spatiotemporal Reporting Over Net-                  for Influenza Surveillance Using Bayesian Change
   Paquet C. What is epidemic intelligence, and how         work and GPS. JMIR Mhealth Uhealth 2020 Jun                   Point Analysis: A Comparative Analysis. JMIR
   is it being improved in Europe? Euro Surveill 2006       10;8(6):e19457.                                               Public Health Surveill 2016 Oct 20;2(2):e161.
   Feb 2;11(2):E060202.4                                15. Wakamiya S, Kawai Y, Aramaki E. After the boom            29. Khatua A, Khatua A. Immediate and long-term
2. Freifeld CC, Mandl KD, Reis BY, Brownstein JS.           no one tweets: microblog-based influenza detection            effects of 2016 Zika Outbreak: A Twitter-based
   HealthMap: global infectious disease monitoring          incorporating indirect information. In: Proceedings           study. In: 2016 IEEE 18th International Confer-
   through automated classification and visualization       of the Sixth International Conference on Emerging             ence on e-Health Networking, Applications and
   of Internet media reports. J Am Med Inform Assoc         Databases: Technologies, Applications, and Theory             Services (Healthcom) 2016 Sep 14. IEEE; 2016.
   2008 Mar-Apr;15(2):150-7.                                2016 Oct 17. p. 17-25.                                        p. 1-6.
3. Rortais A, Belyaeva J, Gemo M, Van der Goot E,       16. Allen C, Tsou MH, Aslam A, Nagel A, Gawron                30. Al-Mohrej A, Agha S. Are Saudi medical students
   Linge JP. MedISys: An early-warning system for           JM. Applying GIS and Machine Learning Meth-                   aware of middle east respiratory syndrome coro-
   the detection of (re-) emerging food-and feed-           ods to Twitter Data for Multiscale Surveillance of            navirus during an outbreak? J Infect Public Health
   borne hazards. Food Research International 2010          Influenza. PLoS One 2016 Jul 25;11(7):e0157734.               2017 Jul-Aug;10(4):388-95.
   Jun 1;43(5):1553-6.                                  17. Chen Y, Zhang Y, Xu Z, Wang X, Lu J, Hu W.                31. Gu H, Chen B, Zhu H, Jiang T, Wang X, Chen L,
4. Samaras L, García-Barriocanal E, Sicilia MA.             Avian Influenza A (H7N9) and related Internet                 et al. Importance of Internet surveillance in public
   Syndromic surveillance using web data: a sys-            search query data in China. Sci Rep 2019 Jul                  health emergency control and prevention: evidence
   tematic review. Innovation in Health Informatics         18;9(1):10434.                                                from a digital epidemiologic study during avian
   2020:39-77.                                          18. Liu K, Li L, Jiang T, Chen B, Jiang Z, Wang Z,                influenza A H7N9 outbreaks. J Med Internet Res
5. Castillo-Sánchez G, Marques G, Dorronzoro E,             et al. Chinese Public Attention to the Outbreak of            2014 Jan 17;16(1):e20.

                                                                                                                                    IMIA Yearbook of Medical Informatics 2021
Gabarron et al.

32. Barata G, Shores K, Alperin JP. Local chatter or          (SOMA’10), 2010 Jul 25. p. 115-22.                        Study. JMIR Public Health Surveill 2019 Mar
    international buzz? Language differences on posts     46. Ofoghi B, Mann M, Verspoor K. Ealry discovery             8;5(1):e13142.
    about Zika research on Twitter and Facebook. PLoS         of salient health threats: a social media emotion     61. Deiner MS, McLeod SD, Wong J, Chodosh J,
    One 2018 Jan 5;13(1):e0190482.                            classification technique. Pac Symp Biocomput              Lietman TM, Porco TC. Google Searches and
33. Mackey T, Purushothaman V, Li J, Shah N, Nali             2016;21:504-15.                                           Detection of Conjunctivitis Epidemics Worldwide.
    M, Bardier C, et al. Machine Learning to Detect       47. Mowery J. Twitter Influenza Surveillance: Quan-           Ophthalmology 2019 Sep;126(9):1219-1229.
    Self-Reporting of Symptoms, Testing Access, and           tifying Seasonal Misdiagnosis Patterns and their      62. Al-Garadi MA, Khan MS, Varathan KD, Mujtaba
    Recovery Associated With COVID-19 on Twitter:             Impact on Surveillance Estimates. Online J Public         G, Al-Kabsi AM. Using online social networks to
    Retrospective Big Data Infoveillance Study. JMIR          Health Inform 2016 Dec 28;8(3):e198.                      track a pandemic: A systematic review. J Biomed
    Public Health Surveill 2020 Jun 8;6(2):e19509.        48. Wakamiya S, Kawai Y, Aramaki E. Twitter-Based             Inform 2016 Aug;62:1-11.
34. Byrd K, Mansurov A, Baysal O. Mining Twitter              Influenza Detection After Flu Peak via Tweets With    63. Bernardo TM, Rajic A, Young I, Robiadek K,
    Data for Influenza Detection and Surveillance.            Indirect Information: Text Mining Study. JMIR             Pham MT, Funk JA. Scoping review on search
    In: 2016 IEEE/ACM International Workshop                  Public Health Surveill 2018 Sep 25;4(3):e65.              queries and social media for disease surveillance:
    on Software Engineering in Healthcare Systems         49. Comito C, Forestiero A, Pizzuti C. Twitter-based          a chronology of innovation. J Med Internet Res
    (SEHS) May 14. IEEE; 2016. p. 43-9.                       Influenza Surveillance: An Analysis of the                2013 Jul 18;15(7):e147.
35. Broniatowski DA, Paul MJ, Dredze M. National              2016-2017 and 2017-2018 Seasons in Italy. In:         64. Kazemi DM, Borsari B, Levine MJ, Dooley B.
    and local influenza surveillance through Twitter:         Proceedings of the 22nd International Database            Systematic review of surveillance by social media
    an analysis of the 2012-2013 influenza epidemic.          Engineering & Applications Symposium 2018 Jun             platforms for illicit drug use. J Public Health (Oxf)
    PLoS One 2013 Dec 9;8(12):e83672.                         18. p. 175-82.                                            2017 Dec 1;39(4):763-76.
36. Collier N, Son NT, Nguyen NM. OMG U got flu?          50. Kanhabua N, Nejdl W. Understanding the diversity      65. Sousa-Pinto B, Anto A, Czarlewski W, Anto JM,
    Analysis of shared health messages for bio-sur-           of tweets in the time of outbreaks. In: Proceedings       Fonseca JA, Bousquet J. Assessment of the Impact
    veillance. J Biomed Semantics 2011 Oct 6;2 Suppl          of the 22nd International Conference on World             of Media Coverage on COVID-19–Related Google
    5(Suppl 5):S9.                                            Wide Web 2013 May 13; p. 1335-42.                         Trends Data: Infodemiology Study. J Med Internet
37. Chew C, Eysenbach G. Pandemics in the age             51. Gui X, Wang Y, Kou Y, Reynolds TL, Chen Y, Mei            Res 2020 Aug 10;22(8):e19611.
    of Twitter: content analysis of Tweets during             Q, et al. Understanding the Patterns of Health In-    66. Low DM, Rumker L, Talkar T, Torous J, Cecchi G,
    the 2009 H1N1 outbreak. PLoS One 2010 Nov                 formation Dissemination on Social Media during            Ghosh SS. Natural Language Processing Reveals
    29;5(11):e14118.                                          the Zika Outbreak. AMIA Annu Symp Proc 2018               Vulnerable Mental Health Support Groups and
38. Zhang K, Arablouei R, Jurdak R. Predicting prev-          Apr 16;2017:820-9.                                        Heightened Health Anxiety on Reddit During
    alence of influenza-like illness from geo-tagged      52. Shen C, Chen A, Luo C, Zhang J, Feng B, Liao              COVID-19: Observational Study. J Med Internet
    tweets. In: Proceedings of the 26th International         W. Using Reports of Symptoms and Diagnoses                Res 2020 Oct 12;22(10):e22635.
    Conference on World Wide Web Companion 2017               on Social Media to Predict COVID-19 Case              67. Campos-Castillo C, Laestadius LI. Racial and Eth-
    Apr 3; p. 1327-34.                                        Counts in Mainland China: Observational Info-             nic Digital Divides in Posting COVID-19 Content
39. Garazzino S, Montagnani C, Donà D, Meini                  veillance Study. J Med Internet Res 2020 May              on Social Media Among US Adults: Secondary
    A, Felici E, Vergine G, et al. Italian SITIP-SIP          28;22(5):e19421.                                          Survey Analysis. J Med Internet Res 2020 Jul
    SARS-CoV-2 paediatric infection study group.          53. Han X, Wang J, Zhang M, Wang X. Using Social              3;22(7):e20472.
    Multicentre Italian study of SARS-CoV-2 in-               Media to Mine and Analyze Public Opinion Relat-       68. Caldwell WK, Fairchild G, Del Valle SY. Surveil-
    fection in children and adolescents, preliminary          ed to COVID-19 in China. Int J Environ Res Public         ling Influenza Incidence With Centers for Disease
    data as at 10 April 2020. Euro Surveill 2020              Health 2020 Apr 17;17(8):2788.                            Control and Prevention Web Traffic Data: Demon-
    May;25(18):2000600.                                   54. Broniatowski DA, Dredze M, Paul MJ, Dugas A.              stration Using a Novel Dataset. J Med Internet Res
40. He Z, Zhang CJ, Huang J, Zhai J, Zhou S, Chiu JW,         Using Social Media to Perform Local Influenza             2020 Jul 3;22(7):e14337.
    Sheng et al. A New Era of Epidemiology: Digital           Surveillance in an Inner-City Hospital: A Retro-      69. Hung M, Lauren E, Hon ES, Birmingham WC,
    Epidemiology for Investigating the COVID-19               spective Observational Study. JMIR Public Health          Xu J, Su S, et al. Social Network Analysis of
    Outbreak in China. J Med Internet Res 2020 Sep            Surveill 2015 Jan-Jun;1(1):e5.                            COVID-19 Sentiments: Application of Artifi-
    17;22(9):e21685.                                      55. Corley CD, Cook DJ, Mikler AR, Singh KP. Adv              cial Intelligence. J Med Internet Res 2020 Aug
41. Yousefinaghani S, Dara R, Poljak Z, Bernardo TM,          Exp Med Biol 2010;680:559-64.                             18;22(8):e22590.
    Sharif S. The Assessment of Twitter‘s Potential for   56. Odlum M, Yoon S. What can we learn about the          70. Wilson SL, Wiysonge C. Social media and vac-
    Outbreak Detection: Avian Influenza Case Study.           Ebola outbreak from tweets? Am J Infect Control           cine hesitancy. BMJ Global Health 2020 Oct
    Sci Rep 2019 Dec 3;9(1):18147.                            2015 Jun;43(6):563-71.                                    1;5(10):e004206.
42. Nagel AC, Tsou MH, Spitzberg BH, An L, Gawron         57. Li HO, Bailey A, Huynh D, Chan J. YouTube as a        71. Rivera-Romero O, Konstantinidis S, Denecke K,
    JM, Gupta DK, et al. The complex relationship             source of information on COVID-19: a pandemic             Gabarrón E, Petersen C, Househ M, et al. Ethical
    of realspace events and messages in cyberspace:           of misinformation? BMJ Glob Health 2020                   Considerations for Participatory Health through
    case study of influenza and pertussis using tweets.       May;5(5):e002604.                                         Social Media: Healthcare Workforce and Policy
    J Med Internet Res 2013 Oct 24;15(10):e237.           58. Mollema L, Harmsen IA, Broekhuizen E, Clijnk R,           Maker Perspectives: Contribution of the IMIA
43. Aslam AA, Tsou MH, Spitzberg BH, An L,                    De Melker H, Paulussen T, et al. Disease detection        Participatory Health and Social Media Working
    Gawron JM, Gupta DK, et al. The reliability of            or public opinion reflection? Content analysis of         Group. Yearb Med Inform 2020 Aug;29(1):71-6.
    tweets as a supplementary method of seasonal              tweets, other social media, and online newspapers     72. Golinelli D, Boetto E, Carullo G, Nuzzolese AG,
    influenza surveillance. J Med Internet Res 2014           during the measles outbreak in The Netherlands in         Landini MP, Fantini MP. Adoption of Digital
    Nov 14;16(11):e250.                                       2013. J Med Internet Res 2015 May 26;17(5):e128.          Technologies in Health Care During the COVID-19
44. Abd-Alrazaq A, Alhuwail D, Househ M, Hamdi            59. Corley CD, Cook DJ, Mikler AR, Singh KP. Text             Pandemic: Systematic Review of Early Scien-
    M, Shah Z. Top Concerns of Tweeters During the            and structural data mining of influenza mentions          tific Literature. J Med Internet Res 2020 Nov
    COVID-19 Pandemic: Infoveillance Study. J Med             in web and social media. Int J Environ Res Public         6;22(11):e22280.
    Internet Res 2020 Apr 21;22(4):e19016.                    Health 2010 Feb;7(2):596-615.                         73. Almeida BD, Doneda D, Ichihara MY, Barral-Netto
45. Culotta A. Towards detecting influenza epidemics      60. Bragazzi NL, Mahroum N. Google Trends Pre-                M, Matta GC, Rabello ET, et al. Personal data
    by analyzing Twitter messages. In Proceedings             dicts Present and Future Plague Cases During the          usage and privacy considerations in the COVID-19
    of the 1st Workshop on Social Media Analytics             Plague Outbreak in Madagascar: Infodemiological           global pandemic. Ciência & Saúde Coletiva 2020

IMIA Yearbook of Medical Informatics 2021
Role of Participatory Health Informatics in Detecting and Managing Pandemics: Literature Review

    Jun 5;25:2487-92.                                     Inform 2016 Aug;62:1-11.                                  Correspondence to:
74. Castillo-Sánchez G, Marques G, Dorronzoro E,      76. Salathé M, Bengtsson L, Bodnar TJ, Brewer DD,             Kerstin Denecke
    Rivera-Romero O, Franco-Martín M, De la Torre-        Brownstein JS, Buckee C, et al. Digital epidemi-          Bern University of Applied Sciences
    Díez I. Suicide Risk Assessment Using Machine         ology. PLoS Comput Biol 2012;8(7):e1002616.               Institute for Medical Informatics
    Learning and Social Networks: a Scoping Review.   77. Denecke K, Gabarron E, Grainger R, Konstan-               Quellgasse 1
    J Med Syst 2020 Nov 9;44(12):205.                     tinidis ST, Lau A, Rivera-Romero O, et al. Artificial     2502 Biel / Switzerland
75. Al-Garadi MA, Khan MS, Dewi K, Varathan GM,           Intelligence for Participatory Health: Applications,      E-mail: kerstin.denecke@bfh.ch
    Al-Kabsi AM. Using online social networks to          Impact, and Future Implications. Yearb Med In-
    track a pandemic: A systematic review. J Biomed       form 2019 Aug;28(1):165-73.

                                                                                                                                   IMIA Yearbook of Medical Informatics 2021
You can also read