Background Internet-based testing for sexually transmitted infections (STIs) allows asymptomatic individuals to order a self-sampling kit online and receive their results electronically, reducing the need to attend a clinic unless for treatment. This approach has become increasingly common; however, there is evidence that barriers exist to accessing it, particularly among some high-risk populations. We review the qualitative evidence on this topic, as qualitative research is well-placed to identify the complex influences that relate to accessing testing. Objective This paper aims to explore perceptions and experiences of internet-based testing for STIs among users and potential users. Methods Searches were run through 5 electronic databases (CINAHL, EMBASE, MEDLINE, PsycINFO, and Web of Science) to identify peer-reviewed studies published between 2005 and 2018. Search terms were drawn from 4 categories: STIs, testing or screening, digital health, and qualitative methods. Included studies were conducted in high-income countries and explored patient perceptions or experiences of internet-based testing, and data underwent thematic synthesis. Results A total of 11 studies from the 1735 studies identified in the initial search were included in the review. The synthesis identified that internet-based testing is viewed widely as being acceptable and is preferred over clinic testing by many individuals due to perceived convenience and anonymity. However, a number of studies identified concerns relating to test accuracy and lack of communication with practitioners, particularly when receiving results. There was a lack of consensus on preferred media for results delivery, although convenience and confidentiality were again strong influencing factors. The majority of included studies were limited by the fact that they researched hypothetical services. Conclusions Internet-based testing providers may benefit from emphasizing this testing’s comparative convenience and privacy compared with face-to-face testing in order to improve uptake, as well as alleviating concerns about the self-sampling process. There is a clear need for further research exploring in depth the perceptions and experiences of people who have accessed internet-based testing and for research on internet-based testing that explicitly gathers the views of populations that are at high risk of STIs. Trial Registration PROSPERO CRD42019146938; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=146938
Objective: To compare the findings from a qualitative and a natural language processing (NLP) based analysis of online patient experience posts on patient experience of the effectiveness and impact of the drug Modafinil.Methods: Posts (n = 260) from 5 online social media platforms where posts were publicly available formed the dataset/corpus. Three platforms asked posters to give a numerical rating of Modafinil. Thematic analysis: data was coded and themes generated. Data were categorized into PreModafinil, Acquisition, Dosage, and PostModafinil and compared to identify each poster's own view of whether taking Modafinil was linked to an identifiable outcome. We classified this as positive, mixed, negative, or neutral and compared this with numerical ratings. NLP: Corpus text was speech tagged and keywords and key terms extracted. We identified the following entities: drug names, condition names, symptoms, actions, and side-effects. We searched for simple relationships, collocations, and co-occurrences of entities. To identify causal text, we split the corpus into PreModafinil and PostModafinil and used n-gram analysis. To evaluate sentiment, we calculated the polarity of each post between −1 (negative) and +1 (positive). NLP results were mapped to qualitative results.Results: Posters had used Modafinil for 33 different primary conditions. Eight themes were identified: the reason for taking (condition or symptom), impact of symptoms, acquisition, dosage, side effects, other interventions tried or compared to, effectiveness of Modafinil, and quality of life outcomes. Posters reported perceived effectiveness as follows: 68% positive, 12% mixed, 18% negative. Our classification was consistent with poster ratings. Of the most frequent 100 keywords/keyterms identified by term extraction 88/100 keywords and 84/100 keyterms mapped directly to the eight themes. Seven keyterms indicated negation and temporal states. Sentiment was as follows 72% positive sentiment 4% neutral 24% negative. Matching of sentiment between the qualitative and NLP methods was accurate in 64.2% of posts. If we allow for one category difference matching was accurate in 85% of posts.Conclusions: User generated patient experience is a rich resource for evaluating real world effectiveness, understanding patient perspectives, and identifying research gaps. Both methods successfully identified the entities and topics contained in the posts. In contrast to current evidence, posters with a wide range of other conditions found Modafinil effective. Perceived causality and effectiveness were identified by both methods demonstrating the potential to augment existing knowledge.
Purpose Social media has led to fundamental changes in the way that people look for and share health related information. There is increasing interest in using this spontaneously generated patient experience data as a data source for health research. The aim was to summarise the state of the art regarding how and why SGOPE data has been used in health research. We determined the sites and platforms used as data sources, the purposes of the studies, the tools and methods being used, and any identified research gaps. Methods A scoping umbrella review was conducted looking at review papers from 2015 to Jan 2021 that studied the use of SGOPE data for health research. Using keyword searches we identified 1759 papers from which we included 58 relevant studies in our review. Results Data was used from many individual general or health specific platforms, although Twitter was the most widely used data source. The most frequent purposes were surveillance based, tracking infectious disease, adverse event identification and mental health triaging. Despite the developments in machine learning the reviews included lots of small qualitative studies. Most NLP used supervised methods for sentiment analysis and classification. Very early days, methods need development. Methods not being explained. Disciplinary differences - accuracy tweaks vs application. There is little evidence of any work that either compares the results in both methods on the same data set or brings the ideas together. Conclusion Tools, methods, and techniques are still at an early stage of development, but strong consensus exists that this data source will become very important to patient centred health research.
BACKGROUND Internet-based testing for sexually transmitted infections (STIs) allows asymptomatic individuals to order a self-sampling kit online and receive their results electronically, reducing the need to attend a clinic unless for treatment. This approach has become increasingly common, however there is evidence that barriers exist to accessing it, particularly among some high-risk populations. We review the qualitative evidence on this topic, as qualitative research is well-placed to identify the complex influences which relate to accessing testing. OBJECTIVE To explore attitudes towards, and experiences of, internet-based testing for STIs among users and potential users. METHODS Searches were run through five electronic databases (CINAHL, EMBASE, MEDLINE, PsychINFO and Web of Science) to identify peer-reviewed studies published between 2005 and 2018. An adapted PICO model for qualitative research was used to design the search, with terms encompassing: STIs; testing or screening; digital health; and qualitative methods. Included studies were conducted in high-income countries and explored patient attitudes towards internet-based testing, and data underwent thematic synthesis. RESULTS A total of 11 studies were included in the review, from 1735 identified in the initial search. The synthesis identified that internet-based testing is viewed widely as being acceptable, and is preferred over clinic testing by many individuals due to perceived convenience and anonymity. However, a number of studies identified concerns relating to test accuracy and lack of communication with practitioners, particularly when receiving results. There was a lack of consensus on preferred media for results delivery, although convenience and confidentiality were again strong influencing factors. The majority of included studies were limited by the fact that they researched hypothetical services. CONCLUSIONS Internet-based testing providers may benefit from emphasising its comparative convenience and privacy compared to face-to-face testing in order to improve uptake, as well as alleviating concerns about the self-sampling process. There is a clear need for further research exploring in-depth the attitudes and experiences of people who have accessed internet-based testing, and for research on internet-based testing explicitly gathering the views of populations which are at high-risk of STIs.
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