Consumer language, patient language, and thesauri: a review of the literature

Smith, Catherine Arnott

doi:10.3163/1536-5050.99.2.005

Cited by 12 publications

(5 citation statements)

References 74 publications

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“…Namely around convenience, type of information and data being included in research. This could be attributed to the app presenting itself as a potential solution capable of overcoming the language barrier [4, 38,39]. Potentially the app could have a list of different languages to choose from, that would allow a diverse range of people to utilise the app with complete understanding.…”

Section: Discussionmentioning

confidence: 99%

Consumer preference to utilise a mobile health app: A stated preference experiment

2020

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BackgroundOne prominent barrier faced by healthcare consumers when accessing health services is a common requirement to complete repetitive, inefficient paper-based documentation at multiple registration sites. Digital innovation has a potential role to reduce the burden in this area, through the collection and sharing of data between healthcare providers. While there is growing evidence for digital innovations to potentially improve the effectiveness and efficiency of health systems, there is less information on the willingness of healthcare consumers to embrace and utilise technology to provide data. AimThe study aims to improve understanding of consumers' preference for utilising a digital health administration mobile app. OPEN ACCESSCitation: Lim D, Norman R, Robinson S (2020) Consumer preference to utilise a mobile health app: A stated preference experiment. PLoS ONE 15(2): e0229546. https://doi.org/10.

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Section: Discussionmentioning

confidence: 99%

Consumer preference to utilise a mobile health app: A stated preference experiment

2020

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“…A consideration when performing content analysis is that the terms used in healthrelated content in social media can vary from the terminology used in the medical community [72]. This is sometimes referred to as patient language or Consumer Health Vocabulary.…”

Section: Scope For Future Workmentioning

confidence: 99%

Multiple-Perspective Data-Driven Analysis of Online Health Communities

Alnashwan,

O’Riordan,

Sorensen

2023

Healthcare

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The growth of online health communities and socially generated health-related content has the potential to provide considerable value for patients and healthcare providers alike. For example, members of the public can acquire medical knowledge and interact with others online. However, the volume of information—and the consequent ‘noise’ associated with large data volumes—can create difficulties for users. In this paper, we present a data-driven approach to better understand these data from multiple stakeholder perspectives. We utilise three techniques—sentiment analysis, content analysis, and topic analysis—to analyse user-generated medical content related to Lyme disease. We use a supervised feature-based model to identify sentiments, content analysis to identify concepts that predominate, and latent Dirichlet allocation strategy as an unsupervised generative model to identify topics represented in the discourse. We validate that applying three different analytic methods highlights differing aspects of the information different stakeholders will be interested in based on the goals of different stakeholders, expert opinion, and comparison with patient information leaflets.

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“…Consequently, the use of artificial intelligence [127] with evaluation criteria, such as Health On the Net code [128] or the DISCERN [129] framework, could facilitate the provision of quality material to patients. Finally, content constructed with the help of patients with SCD and using consumer health vocabulary, simple patient language, and thesauri could improve the communication of health information and adequacy [130,131].…”

Section: Increasing Psychological Capability: Quality Feedback On Sel...mentioning

confidence: 99%

Factors Influencing Motivation and Engagement in Mobile Health Among Patients With Sickle Cell Disease in Low-Prevalence, High-Income Countries: Qualitative Exploration of Patient Requirements

Issom¹,

Henriksen²,

Woldaregay³

et al. 2020

JMIR Hum Factors

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Background Sickle cell disease (SCD) is a hematological genetic disease affecting over 25 million people worldwide. The main clinical manifestations of SCD, hemolytic anemia and vaso-occlusion, lead to chronic pain and organ damages. With recent advances in childhood care, high-income countries have seen SCD drift from a disease of early childhood mortality to a neglected chronic disease of adulthood. In particular, coordinated, preventive, and comprehensive care for adults with SCD is largely underresourced. Consequently, patients are left to self-manage. Mobile health (mHealth) apps for chronic disease self-management are now flooding app stores. However, evidence remains unclear about their effectiveness, and the literature indicates low user engagement and poor adoption rates. Finally, few apps have been developed for people with SCD and none encompasses their numerous and complex self-care management needs. Objective This study aimed to identify factors that may influence the long-term engagement and user adoption of mHealth among the particularly isolated community of adult patients with SCD living in low-prevalence, high-income countries. Methods Semistructured interviews were conducted. Interviews were audiotaped, transcribed verbatim, and analyzed using thematic analysis. Analysis was informed by the Braun and Clarke framework and mapped to the COM-B model (capability, opportunity, motivation, and behavior). Results were classified into high-level functional requirements (FRs) and nonfunctional requirements (NFRs) to guide the development of future mHealth interventions. Results Overall, 6 males and 4 females were interviewed (aged between 21 and 55 years). Thirty FRs and 31 NFRs were extracted from the analysis. Most participants (8/10) were concerned about increasing their physical capabilities being able to stop pain symptoms quickly. Regarding the psychological capability aspects, all interviewees desired to receive trustworthy feedback on their self-care management practices. About their physical opportunities, most (7/10) expressed a strong desire to receive alerts when they would reach their own physiological limitations (ie, during physical activity). Concerning social opportunity, most (9/10) reported wanting to learn about the self-care practices of other patients. Relating to motivational aspects, many interviewees (6/10) stressed their need to learn how to avoid the symptoms and live as normal a life as possible. Finally, NFRs included inconspicuousness and customizability of user experience, automatic data collection, data shareability, and data privacy. Conclusions Our findings suggest that motivation and engagement with mHealth technologies among the studied population could be increased by providing features that clearly benefit them. Self-management support and self-care decision aid are patients’ major demands. As the complexity of SCD self-management requires a high cognitive load, pervasive health technologies such as wearable sensors, implantable devices, or inconspicuous conversational user interfaces should be explored to ease it. Some of the required technologies already exist but must be integrated, bundled, adapted, or improved to meet the specific needs of people with SCD.

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Consumer language, patient language, and thesauri: a review of the literature

Abstract: The author reflects on the implications of these findings for online social networks devoted to patients and the patient experience.

Cited by 12 publications

References 74 publications

Consumer preference to utilise a mobile health app: A stated preference experiment

Consumer preference to utilise a mobile health app: A stated preference experiment

Multiple-Perspective Data-Driven Analysis of Online Health Communities

Factors Influencing Motivation and Engagement in Mobile Health Among Patients With Sickle Cell Disease in Low-Prevalence, High-Income Countries: Qualitative Exploration of Patient Requirements

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