Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.

BACKGROUND: International advances in information communication, eHealth, and other digital health technologies have led to significant expansions in the collection and analysis of personal health data. However, following a series of high-profile data sharing scandals and the emergence of COVID-19, critical exploration of public willingness to share personal health data remains limited, particularly for third-party or secondary uses. OBJECTIVE: This systematic review aims to explore factors that affect public willingness to share personal health data for third-party or secondary uses. METHODS: A systematic search of 6 databases (MEDLINE, Embase, PsycINFO, CINAHL, Scopus, and SocINDEX) was conducted with review findings analyzed using inductive-thematic analysis and synthesized using a narrative approach. RESULTS: Of the 13,949 papers identified, 135 were included. Factors most commonly identified as a barrier to data sharing from a public perspective included data privacy, security, and management concerns. Other factors found to influence willingness to share personal health data included the type of data being collected (ie, perceived sensitivity); the type of user requesting their data to be shared, including their perceived motivation, profit prioritization, and ability to directly impact patient care; trust in the data user, as well as in associated processes, often established through individual choice and control over what data are shared with whom, when, and for how long, supported by appropriate models of dynamic consent; the presence of a feedback loop; and clearly articulated benefits or issue relevance including valued incentivization and compensation at both an individual and collective or societal level. CONCLUSIONS: There is general, yet conditional public support for sharing personal health data for third-party or secondary use. Clarity, transparency, and individual control over who has access to what data, when, and for how long are widely regarded as essential prerequisites for public data sharing support. Individual levels of control and choice need to operate within the auspices of assured data privacy and security processes, underpinned by dynamic and responsive models of consent that prioritize individual or collective benefits over and above commercial gain. Failure to understand, design, and refine data sharing approaches in response to changeable patient preferences will only jeopardize the tangible benefits of data sharing practices being fully realized.

Use and usability of GP online services: a mixed-methods sequential study, before and during the COVID-19 pandemic, based on qualitative interviews, analysis of routine eConsult usage and feedback data, and assessment of GP websites in Devon and Cornwall, England.

OBJECTIVES: We explored use and usability of general practitioner (GP) online services. SETTING: Devon and Cornwall, England. DESIGN: Mixed-methods sequential study based on qualitative interviews, analysis of routine eConsult usage and feedback data, and assessment of GP websites. METHODS: First, we interviewed 32 staff and 18 patients from seven practices in June 2018. Second, we used routinely collected consultation meta-data and, third, patient feedback data for all practices using eConsult from June 2018 to March 2021. Lastly, we examined GP websites' usability in January 2020 and September 2021. RESULTS: Interviews suggested practices infrequently involved patients in eConsult implementation. Some patients 'gamed' the system to achieve what they wanted. Usage data showed a major increase in eConsult resulting from COVID-19. Women used eConsult twice as much as men. Older had similar eConsult consultation rates to younger patients. Patient feedback forms were completed for fewer than 3% of consultations. Patients were mostly satisfied with eConsult but some had concerns about its length and repetitiveness, lack of continuity over time and between eConsult and medical records. We did not find clear evidence that patients' suggested improvements were acted on. Finally, few GP websites met accessibility guidelines and may hinder access to online national services such as eConsult. CONCLUSION: Given that, face to face, older people consult more, usage data suggest that older people have reduced online access. That the female-to-male ratio of eConsult use use was even greater than 'traditional' face-to-face ratio was unexpected and needs further research. Although eConsult collects and uses routine patient feedback to improve the system, more open systems for patient feedback, such as Care Opinion, may be more effective in helping online systems evolve. Lastly, we question the need for GP websites and suggest that national or regional services are better placed to maintain accessible services.

The Role of Health Kiosks: Scoping Review.

BACKGROUND: Health kiosks are publicly accessible computing devices that provide access to services, including health information provision, clinical measurement collection, patient self-check-in, telemonitoring, and teleconsultation. Although the increase in internet access and ownership of smart personal devices could make kiosks redundant, recent reports have predicted that the market will continue to grow. OBJECTIVE: We seek to clarify the current and future roles of health kiosks by investigating the settings, roles, and clinical domains in which kiosks are used; whether usability evaluations of health kiosks are being reported, and if so, what methods are being used; and what the barriers and facilitators are for the deployment of kiosks. METHODS: We conducted a scoping review using a bibliographic search of Google Scholar, PubMed, and Web of Science databases for studies and other publications between January 2009 and June 2020. Eligible papers described the implementation as primary studies, systematic reviews, or news and feature articles. Additional reports were obtained by manual searching and querying the key informants. For each article, we abstracted settings, purposes, health domains, whether the kiosk was opportunistic or integrated with a clinical pathway, and whether the kiosk included usability testing. We then summarized the data in frequency tables. RESULTS: A total of 141 articles were included, of which 134 (95%) were primary studies, and 7 (5%) were reviews. Approximately 47% (63/134) of the primary studies described kiosks in secondary care settings. Other settings included community (32/134, 23.9%), primary care (24/134, 17.9%), and pharmacies (8/134, 6%). The most common roles of the health kiosks were providing health information (47/134, 35.1%), taking clinical measurements (28/134, 20.9%), screening (17/134, 12.7%), telehealth (11/134, 8.2%), and patient registration (8/134, 6.0%). The 5 most frequent health domains were multiple conditions (33/134, 24.6%), HIV (10/134, 7.5%), hypertension (10/134, 7.5%), pediatric injuries (7/134, 5.2%), health and well-being (6/134, 4.5%), and drug monitoring (6/134, 4.5%). Kiosks were integrated into the clinical pathway in 70.1% (94/134) of studies, opportunistic kiosks accounted for 23.9% (32/134) of studies, and in 6% (8/134) of studies, kiosks were used in both. Usability evaluations of kiosks were reported in 20.1% (27/134) of papers. Barriers (e.g., use of expensive proprietary software) and enablers (e.g., handling of on-demand consultations) of deploying health kiosks were identified. CONCLUSIONS: Health kiosks still play a vital role in the health care system, including collecting clinical measurements and providing access to web-based health services and information to those with little or no digital literacy skills and others without personal internet access. We identified research gaps, such as training needs for teleconsultations and scant reporting on usability evaluation methods.

Continuous User Experience Monitoring of a Patient-Completed Preoperative Assessment System in the United Kingdom: Cross-sectional Study.

BACKGROUND: Anesthetic preoperative assessment (POA) is now a common part of the surgical care pathway, and guidelines support its routine use. MyPreOp (Ultramed Ltd) is a web-based POA system that enables remote assessments. Usability is a key factor in the success of digital health solutions. OBJECTIVE: This study aims to assess the usability of the MyPreOp system through patient feedback, investigate the amount of time it took for patients to complete the POA questionnaire and the factors that influenced completion time, and explore the effect on completion times of implementing a validated eHealth usability scale, as compared to using a simple but unvalidated usability evaluation scale, and to test the feasibility of administering a more detailed usability evaluation scale in a staggered manner so as not to unduly increase completion times. METHODS: In this cross-sectional study, anonymized data sets were extracted from the MyPreOp system. The participants were adults (aged ≥18 years), scheduled for nonurgent surgical procedures performed in hospitals in the United Kingdom, who gave consent for their anonymized data to be analyzed. Data collected included age, gender, American Society of Anesthesiology (ASA) physical classification status, and completion time. Two user experience evaluations were used: in Phase 1, 2 questions asking about overall experience and ease of use, and in Phase 2, a previously validated usability questionnaire, with its 20 questions equally distributed among 5 succeeding patient cohorts. There were 2593 respondents in total (Phase 1: n=1193; Phase 2: n=1400). The median age of the participants was 46 years, and 1520 (58.62%) of the 2593 respondents were female. End points measured were the median completion times in Phase I and Phase II. The data were collected by extracting a subset of records from the database and exported to a spreadsheet for analysis (Excel, Microsoft Corporation). The data were analyzed for differences in completion times between Phase I and Phase II, as well as for differences between age groups, genders, and ASA classifications. RESULTS: MyPreOp scored well in usability in both phases. In Phase 1, 81.64% (974/1193) of respondents had a good or better experience, and 93.8% (1119/1193) found it easy to use. The usability rating in Phase 2 was 4.13 out of a maximum of 5, indicating high usability. The median completion time was 40.4 minutes. The implementation of the longer usability evaluation scale in Phase 2 did not negatively impact the completion times. Age and ASA physical status were found to be moderately associated with increased completion times. CONCLUSIONS: MyPreOp rates high in both user experience and usability. The method of dividing the questionnaire into 5 blocks is valid and does not negatively affect completion times. Further research into the factors affecting completion time is recommended.

Web-based textual analysis of free-text patient experience comments from a survey in primary care.

BACKGROUND: Open-ended questions eliciting free-text comments have been widely adopted in surveys of patient experience. Analysis of free text comments can provide deeper or new insight, identify areas for action, and initiate further investigation. Also, they may be a promising way to progress from documentation of patient experience to achieving quality improvement. The usual methods of analyzing free-text comments are known to be time and resource intensive. To efficiently deal with a large amount of free-text, new methods of rapidly summarizing and characterizing the text are being explored. OBJECTIVE: The aim of this study was to investigate the feasibility of using freely available Web-based text processing tools (text clouds, distinctive word extraction, key words in context) for extracting useful information from large amounts of free-text commentary about patient experience, as an alternative to more resource intensive analytic methods. METHODS: We collected free-text responses to a broad, open-ended question on patients' experience of primary care in a cross-sectional postal survey of patients recently consulting doctors in 25 English general practices. We encoded the responses to text files which were then uploaded to three Web-based textual processing tools. The tools we used were two text cloud creators: TagCrowd for unigrams, and Many Eyes for bigrams; and Voyant Tools, a Web-based reading tool that can extract distinctive words and perform Keyword in Context (KWIC) analysis. The association of patients' experience scores with the occurrence of certain words was tested with logistic regression analysis. KWIC analysis was also performed to gain insight into the use of a significant word. RESULTS: In total, 3426 free-text responses were received from 7721 patients (comment rate: 44.4%). The five most frequent words in the patients' comments were "doctor", "appointment", "surgery", "practice", and "time". The three most frequent two-word combinations were "reception staff", "excellent service", and "two weeks". The regression analysis showed that the occurrence of the word "excellent" in the comments was significantly associated with a better patient experience (OR=1.96, 95%CI=1.63-2.34), while "rude" was significantly associated with a worse experience (OR=0.53, 95%CI=0.46-0.60). The KWIC results revealed that 49 of the 78 (63%) occurrences of the word "rude" in the comments were related to receptionists and 17(22%) were related to doctors. CONCLUSIONS: Web-based text processing tools can extract useful information from free-text comments and the output may serve as a springboard for further investigation. Text clouds, distinctive words extraction and KWIC analysis show promise in quick evaluation of unstructured patient feedback. The results are easily understandable, but may require further probing such as KWIC analysis to establish the context. Future research should explore whether more sophisticated methods of textual analysis (eg, sentiment analysis, natural language processing) could add additional levels of understanding.