Shifting Norms and Value Conflicts: Exploring the Effects of HIV Status Disclosure Fields in Sex-Social Apps.

Sex-social applications used by men who have sex with men (MSM) often provide options to disclose HIV status to encourage more positive language and reduce stigma. Yet, little research has sought to understand how in-app disclosure fields impact on disclosure motivation. We interviewed MSM living with HIV and those who self-reported being HIV-negative ( N = 27 ) in the UK and applied a hierarchical model of motivation to interpret our data. We found conflicting motivations for disclosure and point to HIV status disclosure fields having shifted disclosure norms, limiting their perceived optionality. Moreover, the pairwise and location-aware nature of these apps fails to support narrative forms of disclosure, reducing motivation. We highlight an opportunity to support users in disclosing by linking apps more explicitly to the social narratives developed through public health campaigns. This could reduce the required effort to explain "the science" behind different treatment and prevention options and promote a more consistent narrative.

Women's use of online health and social media resources to make sense of their polycystic ovary syndrome (PCOS) diagnosis: a qualitative study.

BACKGROUND: With the growing availability of online health resources and the widespread use of social media to better understand health conditions, people are increasingly making sense of and managing their health conditions using resources beyond their health professionals and personal networks. However, where the condition is complex and poorly understood, this can involve extensive "patient work" to locate, interpret and test the information available. The overall purpose of this study was to investigate how women with polycystic ovary syndrome (PCOS) across two healthcare systems engage with online health resources and social media to better understand this complex and poorly understood lifelong endocrine disorder. METHODS: A semi-structured interview study was conducted with women from the US ( N = 8 ) and UK ( N = 7 ) who had been diagnosed with PCOS within the previous five years. Transcribed data was analysed using a reflexive thematic analysis method. RESULTS: We highlight the information needs and information-seeking strategies women use to make sense of how PCOS affects them, to gain emotional support, and to help them find an effective treatment. We also show how women with PCOS use online health and social media resources to compare themselves to women they view as "normal" and other women with PCOS, to find their sense of "normal for me" along a spectrum of this disorder. CONCLUSION: We draw on previous models of sense-making and finding normal for other complex and sensitive health conditions to capture the nuances of making sense of PCOS. We also discuss implications for the design and use of social media to support people managing PCOS.

Improving digital partner notification for sexually transmitted infections and HIV through a systematic review and application of the Behaviour Change Wheel approach.

BACKGROUND: Partner notification (PN) is key to controlling sexually transmitted infections (STIs) and human immunodeficiency virus (HIV). Digital PN options (e.g. social media, short message service (SMS), emails) are promising in increasing PN behaviour. However, their implementation is often challenging and studies report varied levels of acceptability and uptake of PN, highlighting the need to optimise digital PN interventions. METHODS: A systematic review of barriers and facilitators to digital PN interventions for STIs, including HIV, across eight research databases (from 2010 to 2023) identified eight relevant studies, two of which addressed HIV. Data extraction identified 98 barriers and 54 facilitators to the use of digital PN interventions. These were synthesised into 18 key barriers and 17 key facilitators that were each deemed amenable to change. We then used the Behaviour Change Wheel approach, the Acceptability, Practicability, Effectiveness, Affordability, Side-effects and Equity criteria, and multidisciplinary expert input, to systematically develop practical recommendations to optimise digital PN. RESULTS: Thirty-two specific recommendations clustered around three themes. Digital PN interventions should: (1) empower and support the index patient by providing a range of notification options, accompanied by clear instructions; (2) integrate into users' existing habits and the digital landscape, meeting contemporary standards and expectations of usability; and (3) address the social context of PN both online and offline through normalising the act of PN, combating STI-related stigma and stressing the altruistic aspects of PN through consistent messaging to service users and the public. CONCLUSIONS: Our evidence-based recommendations should be used to optimise existing digital PN interventions and inform the co-production of new ones.

The effectiveness of interventions for optometric referrals into the hospital eye service: A review.

PURPOSE: Ophthalmic services are currently under considerable stress; in the UK, ophthalmology departments have the highest number of outpatient appointments of any department within the National Health Service. Recognising the need for intervention, several approaches have been trialled to tackle the high numbers of false-positive referrals initiated in primary care and seen face to face within the hospital eye service (HES). In this mixed-methods narrative synthesis, we explored interventions based on their clinical impact, cost and acceptability to determine whether they are clinically effective, safe and sustainable. A systematic literature search of PubMed, MEDLINE and CINAHL, guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA), was used to identify appropriate studies published between December 2001 and December 2022. RECENT FINDINGS: A total of 55 studies were reviewed. Four main interventions were assessed, where two studies covered more than one type: training and guidelines (n = 8), referral filtering schemes (n = 32), asynchronous teleophthalmology (n = 13) and synchronous teleophthalmology (n = 5). All four approaches demonstrated effectiveness for reducing false-positive referrals to the HES. There was sufficient evidence for stakeholder acceptance and cost-effectiveness of referral filtering schemes; however, cost comparisons involved assumptions. Referral filtering and asynchronous teleophthalmology reported moderate levels of false-negative cases (2%-20%), defined as discharged patients requiring HES monitoring. SUMMARY: The effectiveness of interventions varied depending on which outcome and stakeholder was considered. More studies are required to explore stakeholder opinions around all interventions. In order to maximise clinical safety, it may be appropriate to combine more than one approach, such as referral filtering schemes with virtual review of discharged patients to assess the rate of false-negative cases. The implementation of a successful intervention is more complex than a 'one-size-fits-all' approach and there is potential space for newer types of interventions, such as artificial intelligence clinical support systems within the referral pathway.

Assessment of optometrists' referral accuracy and contributing factors: A review.

PURPOSE: In the UK, ophthalmology has the highest number of outpatient appointments within the National Health Service. False-positive referrals from primary care are one of the main factors contributing to the oversubscription of hospital eye services (HESs). We reviewed the accuracy of referrals originating from primary care optometrists and contributing factors, such as condition type and years since registration. RECENT FINDINGS: Of the 31 studies included in the review, 22 were retrospective analyses of referrals and appointments at the HES. Eight were prospective studies, and one used online clinical vignettes. Seven assessed the accuracy of referrals for all ocular conditions. The remaining studies focused on glaucoma (n = 11), cataracts (n = 7), emergency conditions (n = 4), neovascular age-related macular degeneration (n = 1) and paediatric binocular vision (n = 1). The diagnostic agreement for suspected emergency ocular conditions was the lowest, with only 21.1% of referrals considered to require urgent attention in one study. For glaucoma, the first-visit discharge rate was high (16.7%-48%). Optometrist referral accuracy was overall 18.6% higher than General Medical Practitioners'; however, the two mainly referred different ocular conditions. Female optometrists made more false-positive referrals than males (p = 0.008). The proportion of false positives decreased by 6.2% per year since registration (p < 0.001). SUMMARY: There was significant variation in referral accuracy across different ocular conditions, partly due to differences when defining accurate referrals. Optometrists working in primary care are generally more limited in their resources than the HES. Thus, choosing the cautious option of referral when they are unsure could be in the patients' best interests. The possible effect of increased use of advanced imaging on referrals requires evaluation. Although interventions such as refinement schemes have been put in place, these vary across regions, and their approaches such as virtual referral triaging may reduce unnecessary HES face-to-face appointments and promote communication between primary and secondary care.

The Use of Digital Health Interventions for Cardiometabolic Diseases Among South Asian and Black Minority Ethnic Groups: Realist Review.

BACKGROUND: Digital health interventions (DHIs) for the prevention and management of cardiometabolic diseases have become increasingly common. However, there is limited evidence for the suitability of these approaches in minority ethnic populations, who are at an increased risk of these diseases. OBJECTIVE: This study aimed to investigate the use of DHIs for cardiovascular disease and type 2 diabetes among minority ethnic populations in countries with a majority of White, English-speaking populations, focusing on people who identified as South Asian, Black, or African American. METHODS: A realist methodology framework was followed. A literature search was conducted to develop context-mechanism-outcome configurations, including the contexts in which DHIs work for the target minority ethnic groups, mechanisms that these contexts trigger, and resulting health outcomes. After systematic searches, a qualitative analysis of the included studies was conducted using deductive and inductive coding. RESULTS: A total of 15 studies on the uptake of DHIs for cardiovascular disease or diabetes were identified, of which 13 (87%) focused on people with an African-American background. The review found evidence supporting the use of DHIs in minority ethnic populations when specific factors are considered in implementation and design, including patients' beliefs, health needs, education and literacy levels, material circumstances, culture, social networks, and wider community and the supporting health care systems. CONCLUSIONS: Our context-mechanism-outcome configurations provide a useful guide for the future development of DHIs targeted at South Asian and Black minority ethnic populations, with specific recommendations for improving cultural competency and promoting accessibility and inclusivity of design.

Acceptability of a tablet-based application to support early HIV testing among men in rural KwaZulu-Natal, South Africa: a mixed method study.

Uptake of HIV testing remains low among men in South Africa. As part of a trial, we assessed the acceptability of a theoretically derived and adapted tablet-based-application (EPIC-HIV1) in rural South Africa. We conducted 20 in-depth interviews with men aged ≥18 years and offered a tablet-based survey to all men aged ≥15 years who received EPIC-HIV1 (Sep-Dec 2018). We conducted a descriptive analysis of the survey and used Self-Determination Theory (SDT) to guide our thematic analysis. A total of 232/307 (75%) completed the survey, 55% of whom were aged 15-24 years. 96%[ CI: 92.8-98.2%; n = 223] found EPIC-HIV1 acceptable and 77% [95% CI: 71.8-82.6%; n = 179] found it user-friendly. 222 [96%] reported that EPIC-HIV1 motivated them to test; 83% (192/232) tested for HIV, of which 33% (64/192) were first time testers. Those who did not consent (n = 40) were more likely to have had an HIV-positive test result. Participants reported that the app boosted their confidence to test. However, they were unsure that the app would help them overcome barriers to test in local clinics. Given reach and usability, an adapted SDT male-tailored app was found to be acceptable and could encourage positive health-seeking behavioural change among men.

How Patient Work Changes Over Time for People With Multimorbid Type 2 Diabetes: Qualitative Study.

BACKGROUND: The experiences of patients change throughout their illness trajectory and differ according to their medical history, but digital support tools are often designed for one specific moment in time and do not change with the patient as their health state changes. This presents a fragmented support pattern where patients have to move from one app to another as they move between health states, and some subpopulations of patients do not have their needs addressed at all. OBJECTIVE: This study aims to investigate how patient work evolves over time for those living with type 2 diabetes mellitus and chronic multimorbidity, and explore the implications for digital support system design. METHODS: In total, 26 patients with type 2 diabetes mellitus and chronic multimorbidity were recruited. Each interview was conducted twice, and interviews were transcribed and analyzed according to the Chronic Illness Trajectory Model. RESULTS: Four unique illness trajectories were identified with different patient work goals and needs: living with stable chronic conditions involves patients seeking to make patient work as routinized and invisible as possible; dealing with cycles of acute or crisis episodes included heavily multimorbid patients who sought support with therapy adherence; responding to unstable changes described patients currently experiencing rapid health changes and increasing patient work intensity; and coming back from crisis focused on patients coping with a loss of normalcy. CONCLUSIONS: Patient work changes over time based on the experiences of the individual, and its timing and trajectory need to be considered when designing digital support interventions. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2018-022163.

Dimensions of ecological validity for usability evaluations in clinical settings.

The development, evaluation, and eventual deployment of novel medical devices is a complex process involving various areas of expertise. Although the need for a User Centred Design approach to the development of both hardware and software has long been established, both current regulatory guidelines and widespread evaluation approaches fail to reflect the challenges encountered during day-to-day clinical practice. As such, the results from these evaluations may not provide a realistic account of the problems encountered by users when introduced to clinical practice. In this paper, we present a case study on designing the evaluation of a novel device to support laparoscopic liver surgery. Through a reflective account of the design of our usability evaluation, we identify and describe seven primary dimensions of ecological validity encountered in clinical usability evaluations. These dimensions are: 'user roles', 'environment', 'training', 'scenario', 'patient involvement', 'software', and 'hardware'. We analyse three recently published clinical usability evaluation articles to assess (and illustrate) the applicability and completeness of these dimensions. Finally, we discuss the compromises encountered during clinical usability evaluations and how to best report on these considerations. The framework presented here aims to further the agenda of ecologically valid evaluation practice, reflecting the constraints of medical practice.

Patient Work and Their Contexts: Scoping Review.

BACKGROUND: Having patients self-manage their health conditions is a widely promoted concept, but many patients struggle to practice it effectively. Moreover, few studies have analyzed the nature of work required from patients and how such work fits into the context of their daily life. OBJECTIVE: This study aimed to review the characteristics of patient work in adult patients. Patient work refers to tasks that health conditions impose on patients (eg, taking medications) within a system of contextual factors. METHODS: A systematic scoping review was conducted using narrative synthesis. Data were extracted from PubMed, Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO, including studies from August 2013 to August 2018. The included studies focused on adult patients and assessed one or more of the following: (1) physical health-related tasks, (2) cognitive health-related tasks, or (3) contextual factors affecting these tasks. Tasks were categorized according to the themes that emerged: (1) if the task is always visible to others or can be cognitive, (2) if the task must be conducted collaboratively or can be conducted alone, and (3) if the task was done with the purpose of creating resources. Contextual factors were grouped according to the level at which they exert influence (micro, meso, or macro) and where they fit in the patient work system (the macroergonomic layer of physical, social, and organizational factors; the mesoergonomic layer of household and community; and the microergonomic triad of person-task-tools). RESULTS: In total, 67 publications were included, with 58 original research articles and 9 review articles. A variety of patient work tasks were observed, ranging from physical and tangible tasks (such as taking medications and visiting health care professionals) to psychological and social tasks (such as creating coping strategies). Patient work was affected by a range of contextual factors on the micro, meso, or macro levels. Our results indicate that most patient work was done alone, in private, and often imposing cognitive burden with low amounts of support. CONCLUSIONS: This review sought to provide insight into the work burden of health management from a patient perspective and how patient context influences such work. For many patients, health-related work is ever present, invisible, and overwhelming. When researchers and clinicians design and implement patient-facing interventions, it is important to understand how the extra work impacts one's internal state and coping strategy, how such work fits into daily routines, and if these changes could be maintained in the long term.

The impact of electronic prescribing systems on healthcare professionals' working practices in the hospital setting: a systematic review and narrative synthesis.

BACKGROUND: The aim of this systematic review was to synthesise peer-reviewed literature assessing the impact of electronic prescribing (eP) systems on the working practices of healthcare professionals (HCPs) in the inpatient setting and identify implications for practice and research. METHODS: We searched PubMed, Medline, Embase, Cochrane and the Cumulative Index to Nursing Allied Health Literature databases for studies published from inception to November 2018. We included controlled, uncontrolled, observational and descriptive studies that explored the effect of eP on HCPs' working practices in an inpatient setting. Data on setting, eP system and impact on working practices were extracted. Methodological quality was assessed using the Mixed Methods Appraisal Tool. Emergent themes were identified and subjected to narrative synthesis. The protocol was registered with PROSPERO (registration CRD42017075804). RESULTS: Searches identified 1301 titles and abstracts after duplicate removal. 171 papers underwent full-text review. A total of 25 studies met the inclusion criteria, from nine different countries. Nineteen were of commercial eP systems. There were a range of study designs; most (n = 14) adopted quantitative methods such as cross-sectional surveys, ten adopted qualitative approaches and a further one used mixed methods. Fourteen of the 25 studies were deemed to be of high quality. Four key themes were identified: communication, time taken to complete tasks, clinical workflow, and workarounds. Within each theme, study findings differed as to whether the effects of eP on HCPs' working practices were positive or negative. CONCLUSION: There is a lack of consensus within the literature on the impact of eP on HCPs' working practices. Future research should explore the strategies resulting in a positive impact on HCPs' working practices and learn from those that have not been successful.

Exploring People's Candidacy for Mobile Health-Supported HIV Testing and Care Services in Rural KwaZulu-Natal, South Africa: Qualitative Study.

BACKGROUND: The use of mobile communication technologies (mHealth: mobile health) in chronic disease management has grown significantly over the years. mHealth interventions have the potential to decentralize access to health care and make it convenient, particularly in resource-constrained settings. It is against this backdrop that we aimed to codevelop (with potential users) a new generation of mobile phone-connected HIV diagnostic tests and Web-based clinical care pathways needed for optimal delivery of decentralized HIV testing, prevention, and care in low- and middle-income countries. OBJECTIVE: The aim of this study was to understand ways in which an mHealth intervention could be developed to overcome barriers to existing HIV testing and care services and promote HIV self-testing and linkage to prevention and care in a poor, HIV hyperendemic community in rural KwaZulu-Natal, South Africa. METHODS: A total of 54 in-depth interviews and 9 focus group discussions were conducted with potential users (including health care providers) in 2 different communities. Theoretically informed by the candidacy framework, themes were identified from the interview transcripts, manually coded, and thematically analyzed. RESULTS: Participants reported barriers, such as fear of HIV identity, stigma, long waiting hours, clinic space, and health care workers' attitudes, as major impediments to effective uptake of HIV testing and care services. People continued to reassess their candidacy for HIV testing and care services on the basis of their experiences and how they or others were treated within the health systems. Despite the few concerns raised about new technology, mobile phone-linked HIV testing was broadly acceptable to potential users (particularly men and young people) and providers because of its privacy (individual control of HIV testing over health provider-initiated testing), convenience (individual time and place of choice for HIV testing versus clinic-based testing), and time saving. CONCLUSIONS: Mobile phone-connected HIV testing and Web-based clinical care and prevention pathways have the potential to support access to HIV prevention and care, particularly for young people and men. Although mHealth provides a way for individuals to test their candidacy for HIV services, the barriers that can make the service unattractive at the clinic level will also need to be addressed if potential demand is to turn into actual demand.

Assessing the Psychometric Properties of the Digital Behavior Change Intervention Engagement Scale in Users of an App for Reducing Alcohol Consumption: Evaluation Study.

BACKGROUND: The level and type of engagement with digital behavior change interventions (DBCIs) are likely to influence their effectiveness, but validated self-report measures of engagement are lacking. The DBCI Engagement Scale was designed to assess behavioral (ie, amount, depth of use) and experiential (ie, attention, interest, enjoyment) dimensions of engagement. OBJECTIVE: We aimed to assess the psychometric properties of the DBCI Engagement Scale in users of a smartphone app for reducing alcohol consumption. METHODS: Participants (N=147) were UK-based, adult, excessive drinkers recruited via an online research platform. Participants downloaded the Drink Less app and completed the scale immediately after their first login in exchange for a financial reward. Criterion variables included the objectively recorded amount of use, depth of use, and subsequent login. Five types of validity (ie, construct, criterion, predictive, incremental, divergent) were examined in exploratory factor, correlational, and regression analyses. The Cronbach alpha was calculated to assess the scale's internal reliability. Covariates included motivation to reduce alcohol consumption. RESULTS: Responses on the DBCI Engagement Scale could be characterized in terms of two largely independent subscales related to experience and behavior. The experiential and behavioral subscales showed high (α=.78) and moderate (α=.45) internal reliability, respectively. Total scale scores predicted future behavioral engagement (ie, subsequent login) with and without adjusting for users' motivation to reduce alcohol consumption (adjusted odds ratio [ORadj]=1.14; 95% CI 1.03-1.27; P=.01), which was driven by the experiential (ORadj=1.19; 95% CI 1.05-1.34; P=.006) but not the behavioral subscale. CONCLUSIONS: The DBCI Engagement Scale assesses behavioral and experiential aspects of engagement. The behavioral subscale may not be a valid indicator of behavioral engagement. The experiential subscale can predict subsequent behavioral engagement with an app for reducing alcohol consumption. Further refinements and validation of the scale in larger samples and across different DBCIs are needed.

Procedural and documentation variations in intravenous infusion administration: a mixed methods study of policy and practice across 16 hospital trusts in England.

BACKGROUND: Procedural and documentation deviations relating to intravenous (IV) infusion administration can have important safety consequences. However, research on such deviations is limited. To address this we investigated the prevalence of procedural and documentation deviations in IV infusion administration and explored variability in policy and practice across different hospital trusts. METHODS: We conducted a mixed methods study. This involved observations of deviations from local policy including quantitative and qualitative data, and focus groups with clinical staff to explore the causes and contexts of deviations. The observations were conducted across five clinical areas (general medicine, general surgery, critical care, paediatrics and oncology day care) in 16 National Health Service (NHS) trusts in England. All infusions being administered at the time of data collection were included. Deviation rates for procedural and documentation requirements were compared between trusts. Local data collectors and other relevant stakeholders attended focus groups at each trust. Policy details and reasons for deviations were discussed. RESULTS: At least one procedural or documentation deviation was observed in 961 of 2008 IV infusions (deviation rate 47.9%; 95% confidence interval 45.5-49.8%). Deviation rates at individual trusts ranged from 9.9 to 100% of infusions, with considerable variation in the prevalence of different types of deviation. Focus groups revealed lack of policy awareness, ambiguous policies, safety and practicality concerns, different organisational priorities, and wide variation in policies and practice relating to prescribing and administration of IV flushes and double-checking. CONCLUSIONS: Deviation rates and procedural and documentation requirements varied considerably between hospital trusts. Our findings reveal areas where local policy and practice do not align. Some policies may be impractical and lack utility. We suggest clearer evidence-based standardisation and local procedures that are contextually practical to address these issues.

Exploring organisational competences in Human Factors and UX project work: managing careers, project tactics and organisational strategy.

Organisational competence in Human Factors and UX (user experience) has not been looked at before despite its relevance to project success. We define organisational competence as the collective competence of the individuals, bringing together their complementary abilities to deliver an outcome that is typically more than the sum of its parts. Twenty-two UX and Human Factors practitioners were interviewed about their project work in two contrasting domains: web design and safety-critical systems to explore organisational competences. Through doing a FRAM analysis, 29 functions and 6 main areas of competences were identified: the central project process; the process of learning about the problem; maintaining and developing client relations; staff development; evolving practices; and the management of documentation for audit and quality control. These dynamic and situated competences form a web of interactions. Managing competences is essential for project success. Implications for managing careers, project tactics and organisational strategy are discussed. Practitioner Summary: Organisational competences impact how routine and non-routine project work is performed, but these have received little attention in the literature. Six key areas of competences in Human Factors and UX project work were identified from practitioner interviews. Managing combinations of adaptive competences is important for developing careers, project tactics and organisational strategies.

Smokers' and drinkers' choice of smartphone applications and expectations of engagement: a think aloud and interview study.

BACKGROUND: Public health organisations such as the National Health Service in the United Kingdom and the National Institutes of Health in the United States provide access to online libraries of publicly endorsed smartphone applications (apps); however, there is little evidence that users rely on this guidance. Rather, one of the most common methods of finding new apps is to search an online store. As hundreds of smoking cessation and alcohol-related apps are currently available on the market, smokers and drinkers must actively choose which app to download prior to engaging with it. The influences on this choice are yet to be identified. This study aimed to investigate 1) design features that shape users' choice of smoking cessation or alcohol reduction apps, and 2) design features judged to be important for engagement. METHODS: Adult smokers (n = 10) and drinkers (n = 10) interested in using an app to quit/cut down were asked to search an online store to identify and explore a smoking cessation or alcohol reduction app of their choice whilst thinking aloud. Semi-structured interview techniques were used to allow participants to elaborate on their statements. An interpretivist theoretical framework informed the analysis. Verbal reports were audio recorded, transcribed verbatim and analysed using inductive thematic analysis. RESULTS: Participants chose apps based on their immediate look and feel, quality as judged by others' ratings and brand recognition ('social proof'), and titles judged to be realistic and relevant. Monitoring and feedback, goal setting, rewards and prompts were identified as important for engagement, fostering motivation and autonomy. Tailoring of content, a non-judgmental communication style, privacy and accuracy were viewed as important for engagement, fostering a sense of personal relevance and trust. Sharing progress on social media and the use of craving management techniques in social settings were judged not to be engaging because of concerns about others' negative reactions. CONCLUSIONS: Choice of a smoking cessation or alcohol reduction app may be influenced by its immediate look and feel, 'social proof' and titles that appear realistic. Design features that enhance motivation, autonomy, personal relevance and credibility may be important for engagement.

Patients Know Best: Qualitative Study on How Families Use Patient-Controlled Personal Health Records.

BACKGROUND: Self-management technologies, such as patient-controlled electronic health records (PCEHRs), have the potential to help people manage and cope with disease. OBJECTIVE: This study set out to investigate patient families' lived experiences of working with a PCEHR. METHODS: We conducted a semistructured qualitative field study with patient families and clinicians at a children's hospital in the UK that uses a PCEHR (Patients Know Best). All families were managing the health of a child with a serious chronic condition, who was typically under the care of multiple clinicians. As data gathering and analysis progressed, it became clear that while much of the literature assumes that patients are willing and waiting to take more responsibility for and control over their health management (eg, with PCEHRs), only a minority of participants in our study responded in this way. Their experiences with the PCEHR were diverse and strongly shaped by their coping styles. Theory on coping identifies a continuum of coping styles, from approach to avoidance oriented, and proposes that patients' information needs depend on their style. RESULTS: We identified 3 groups of patient families and an outlier, distinguished by their coping style and their PCEHR use. We refer to the outlier as controlling (approach oriented, highly motivated to use PCEHR), and the 3 groups as collaborating (approach oriented, motivated to use PCEHR), cooperating (avoidance oriented, less motivated to use PCEHR), and avoiding (very avoidance oriented, not motivated to use PCEHR). CONCLUSIONS: The PCEHR met the needs of controller and collaborators better than the needs of cooperators and avoiders. We draw on the Self-Determination Theory to propose ways in which a PCEHR design might better meet the needs of avoidance-oriented users. Further, we highlight the need for families to also relinquish control at times, and propose ways in which PCEHR design might support a better distribution of control, based on effective training, ease of use, comprehensibility of data security mechanisms, timely information provision (recognizing people's different needs), personalization of use, and easy engagement with clinicians through the PCEHR.

Usability standards meet scenario-based design: challenges and opportunities.

The focus of this paper is on the challenges and opportunities presented by developing scenarios of use for interactive medical devices. Scenarios are integral to the international standard for usability engineering of medical devices (IEC 62366:2007), and are also applied to the development of health software (draft standard IEC 82304-1). The 62366 standard lays out a process for mitigating risk during normal use (i.e. use as per the instructions, or accepted medical practice). However, this begs the question of whether "real use" (that which occurs in practice) matches "normal use". In this paper, we present an overview of the product lifecycle and how it impacts on the type of scenario that can be practically applied. We report on the development and testing of a set of scenarios intended to inform the design of infusion pumps based on "real use". The scenarios were validated by researchers and practitioners experienced in clinical practice, and their utility was assessed by developers and practitioners representing different stages of the product lifecycle. These evaluations highlighted previously unreported challenges and opportunities for the use of scenarios in this context. Challenges include: integrating scenario-based design with usability engineering practice; covering the breadth of uses of infusion devices; and managing contradictory evidence. Opportunities included scenario use beyond design to guide marketing, to inform purchasing and as resources for training staff. This study exemplifies one empirically grounded approach to communicating and negotiating the realities of practice.

Understanding safety-critical interactions with a home medical device through Distributed Cognition.

As healthcare shifts from the hospital to the home, it is becoming increasingly important to understand how patients interact with home medical devices, to inform the safe and patient-friendly design of these devices. Distributed Cognition (DCog) has been a useful theoretical framework for understanding situated interactions in the healthcare domain. However, it has not previously been applied to study interactions with home medical devices. In this study, DCog was applied to understand renal patients' interactions with Home Hemodialysis Technology (HHT), as an example of a home medical device. Data was gathered through ethnographic observations and interviews with 19 renal patients and interviews with seven professionals. Data was analyzed through the principles summarized in the Distributed Cognition for Teamwork methodology. In this paper we focus on the analysis of system activities, information flows, social structures, physical layouts, and artefacts. By explicitly considering different ways in which cognitive processes are distributed, the DCog approach helped to understand patients' interaction strategies, and pointed to design opportunities that could improve patients' experiences of using HHT. The findings highlight the need to design HHT taking into consideration likely scenarios of use in the home and of the broader home context. A setting such as home hemodialysis has the characteristics of a complex and safety-critical socio-technical system, and a DCog approach effectively helps to understand how safety is achieved or compromised in such a system.

Exploring medical device design and use through layers of distributed cognition: how a glucometer is coupled with its context.

Medical devices are becoming more interconnected and complex, and are increasingly supported by fragmented organizational systems, e.g. through different processes, committees, supporting staff and training regimes. Distributed Cognition has been proposed as a framework for understanding the design and use of medical devices. However, it is not clear that it has the analytic apparatus to support the investigation of such complexities. This paper proposes a framework that introduces concentric layers to DiCoT, a method that facilitates the application of Distributed Cognition theory. We use this to explore how an inpatient blood glucose meter is coupled with its context. The analysis is based on an observational study of clinicians using a newly introduced glucometer on an oncology ward over approximately 150h (11days and 4 nights). Using the framework we describe the basic mechanics of the system, incremental design considerations, and larger design considerations. The DiCoT concentric layers (DiCoT-CL) framework shows promise for analyzing the design and use of medical devices, and how they are coupled with their context.