Using Patient Experiences on Dutch Social Media to Supervise Health Care Services: Exploratory Study

Belt, Tom H van de; Engelen, L.; Verhoef, Lise M; Weide, M.J.A. van der; Schoonhoven, Lisette; Kool, Rudolf B

doi:10.2196/jmir.3906

Cited by 33 publications

(43 citation statements)

References 20 publications

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“…The CQC additionally took advantage of a data sharing partnership with other websites collecting intelligence from users that is then used by the regulator. First, the primary espoused reason for involvement is improving regulatory work, and by consequence improving the quality and safety of care (5,16,17,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38). In this view, patients and families are seen as an additional information source.…”

Section: Collective Proactive Methods Of Involvementmentioning

confidence: 99%

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What methods are used to promote patient and family involvement in healthcare regulation? A case study across four countries

Wiig

Rutz

Boyd

et al. 2020

Preprint

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Background In healthcare regulation, the subject of patient and family involvement figures increasingly prominently on the agenda. However, the literature on involving patient and families in regulation is still in its infancy. A systematic analysis of how patient and family involvement in regulation is accomplished across different health systems is lacking. We provide such an overview by mapping and classifying methods of patient and family involvement in regulatory practice in four countries; Norway, England, the Netherlands, and Australia. We thus provide a knowledge base that enables discussions about possible types of involvement, and advantages and difficulties of involvement encountered in practice.Methods The research design was a multiple case study of patient and family involvement in regulation in four countries. The authors collected 1) academic literature if available and 2) documents of regulators that describe user involvement. Based on the data collected, the authors from each country completed a pre-agreed template to describe the involvement methods. The following information was extracted and included if available: 1) Method of involvement, 2) Type of regulatory activity, 3) Purpose of involvement, 4) Who is involved and 5) Lessons learnt.Results Our mapping of involvement methods showed a range of methods being used in regulation, which we classified into four categories: individual proactive, individual reactive, collective proactive, and collective reactive methods. Reported advantages include: increased quality of regulation, increased legitimacy, perceived justice for those affected, and empowerment. Difficulties were also reported concerning: how to incorporate the input of users in decisions, the fact that not all users want to be involved, time and costs required, organizational procedures standing in the way of involvement, and dealing with emotions.Conclusions Our mapping of user involvement methods found a broad variety of involvement methods. These can serve as inspiration to regulators in healthcare. The paper shows that making involvement in regulation successful is a challenging and complex task. The fact that regulators are experimenting with different methods can be valued positively in this regard.

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Section: Collective Proactive Methods Of Involvementmentioning

confidence: 99%

“…42 43, 44, 45). Also, by analyzing reviews written on an independent patient rating website and social media posts, the regulator may identify risks from the patient's perspective (26,27,28,46,47,48,49).…”

Section: Collective Proactive Methods Of Involvementmentioning

confidence: 99%

What methods are used to promote patient and family involvement in healthcare regulation? A case study across four countries

Wiig

Rutz

Boyd

et al. 2020

Preprint

View full text Add to dashboard Cite

show abstract

“…Furthermore, it keeps an archive of all Dutch posts published on social media and thereby provides the opportunity to extract all posts on a certain topic. Coosto has been used for similar purposes in scientific research before . As we used open access Internet sources in which we considered the research as textual representation instead of human subject research, no ethical approval was required.…”

Section: Methodsmentioning

confidence: 99%

“…Coosto has been used for similar purposes in scientific research before. 17,18 As we used open access Internet sources in which we considered the research as textual representation instead of human subject research, 19 no ethical approval was required.…”

Section: Search Strategymentioning

confidence: 99%

Social media monitoring on the perceived safety of medication use during pregnancy: A case study from the Netherlands

Gelder

Rog²,

Bredie

et al. 2019

Brit J Clinical Pharma

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Aims An increasing number of women trust the Internet for information about medication safety during pregnancy. This study aimed to evaluate the availability and accuracy of social media content on the perceived safety of medication use in pregnancy. Methods We performed a systematic search of posts related to medication safety during pregnancy in the Dutch language published on social media, blogs and forums between May 2011 and April 2016 using Coosto, a tool for social media monitoring. The perceived safety in the posts was compared with the Dutch Teratology Information Service (TIS) safety classifications. Results We included 1224 online posts, which described 1441 scenarios about medication safety in pregnancy. A total of 820 (57%) scenarios were in line with the TIS classification. Incorrect perception was higher for prescription medication compared to medication available over‐the‐counter (60 vs 25%). Furthermore, the safety classification of medications with a TIS classification on strict indication or second‐line drugs (93%) and medications with insufficient knowledge on their safety during pregnancy (76%) was more likely to be incorrectly perceived by the public compared to medications with the TIS classification safe (24%). Conclusions Social media monitoring may be useful for surveillance of potentially unsafe use of medications in pregnancy. Many social posts related to medication safety during pregnancy provide inaccurate information. As this information may affect women's perceptions and decisions, accurate communication between healthcare providers and pregnant women regarding the benefits and risks of medications is vital.

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“…Inspectors could determine the relevance of the information found by selecting one of the following options: Relevant, information leads to immediate action (3), Relevant, information leads to further investigations (2), Relevant, information found leads to a signal in the file of the organization (1), or No additional value (0). A more detailed description of this step including results can be found in our recently published article [15].…”

Section: Methodsmentioning

confidence: 99%

Patient Rating Sites for Daily Supervision by Healthcare Inspectorates: Implementation into Practice

Belt¹,

Kleefstra²,

Kool³

2015

iProc

Self Cite

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Using Patient Experiences on Dutch Social Media to Supervise Health Care Services: Exploratory Study

Cited by 33 publications

References 20 publications

What methods are used to promote patient and family involvement in healthcare regulation? A case study across four countries

What methods are used to promote patient and family involvement in healthcare regulation? A case study across four countries

Social media monitoring on the perceived safety of medication use during pregnancy: A case study from the Netherlands

Patient Rating Sites for Daily Supervision by Healthcare Inspectorates: Implementation into Practice

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