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.

Walk a mile in my shoes: perspectives towards sharing of health and experience data among individuals living with sickle cell disorder.

Background: Advancements in digital health technologies (DHTs) mean people are increasingly recording and managing personal health data. As observed during the COVID-19 pandemic, sharing of such data may provide unrivalled opportunities in advancing our understanding of conditions otherwise poorly understood, including rare conditions. Methods: A semi-structured focus group (n=25) explored perspectives and experiences of sharing health data among those with a group of rare haematological conditions, sickle cell disorder (SCD). The focus group explored (I) what 'feeling well' looks like; (II) how this could be monitored using DHTs; (III) which data healthcare professionals (HCPs) should pay greater attention to and; (IV) types of data willing to be shared, with whom, and under which conditions. Key themes were further assessed via an online survey (n=50). Results: Patient-relevant measures of condition-management focused on "everything else that comes with" SCD, suggesting HCPs did not pay sufficient attention to day-to-day symptom variability. This was juxtaposed against the "fixed and one-off" electronic health record (EHR), collecting pre-specified data at pre-determined snapshots of time, not considered reflective of outcomes associated with "feeling well" day-to-day. Forty-four-point-seven percent of respondents had previously shared health data. Most were willing to share data concerning symptoms and health service utilisation, but were less willing to share genomic and EHR data. Sixty-one-point-seven percent believed HCPs did not pay enough attention to daily fluctuations in mental and physical health. Financial benefits (74.5%), trust in organisations seeking data (72.3%), and knowing how data will be used (61.7%) were key facilitators of data sharing. Seventy-one percent, 70% and 65.2% had not previously shared health data with the pharmaceutical industry, charitable organisations and digital health interventions respectively, but were open to doing so in the future. Conclusions: Those living with the rare condition SCD were supportive of collecting and sharing data to foster research and improve understanding and outcomes. However, specific requirements were identified to respect privacy and informational needs regarding future use of data. DHTs can be a valuable tool in improving understanding of the day-to-day impact of health conditions, but understanding patient needs is critical in ensuring involvement in the process, as not all data types are considered of equal value, benefit, or risk.

Loneliness and social networks of older adults in rural communities: a narrative synthesis systematic review.

Introduction: Loneliness has significant impacts on the health of older adults. Social networks help to improve psychosocial and quality of life outcomes among older adults. A fifth of older adults live in rural communities, where geographic isolation poses challenges to health. The dynamics of social networks of older adults in rural communities has not been explored. Objective: To synthesize the literature related to loneliness and social networks of older adults in rural settings. Methods: A mixed-methods systematic review was conducted through searching six bibliographic databases to retrieve peer-reviewed literature with no time limits. We performed a methodological assessment of each study using a mixed method quality assessment tool. Findings are synthesized thematically. Results: A total of 50 studies (32 quantitative, 15 qualitative, and 3 mixed methods) were included in this review. Studies were conducted in 17 different countries, the majority from China (n = 12), the UK (n = 9), and USA (n = 9). Findings revealed that social networks of older adults consist of family, friends and neighbors and continue to be developed through participation in various physical and social activities such as walking groups and participation in religious events. Social networks offer informational, functional, psychological and social support to older adults. Through their social networks, older adults feel socially connected and cared for. Successful interventions to improve social networks and address loneliness were those developed in groups or one-on-one with the older adults. The key ingredient to the positive impact of these interventions on reducing social isolation and loneliness was the formation of a social connection and regular engagement with the older adults. However, the review did not find any explicitly reported theory or model on which these interventions are based. Conclusion: The prevalence of loneliness among older adults in rural areas needs urgent attention. Social network theory and methods can help in developing interventions to address social isolation and loneliness among older adults in rural communities.

Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar for Study of Rare Disease Populations.

Purpose: Rare conditions are often poorly understood, creating barriers in determining the value treatments can provide. This study explored barriers and facilitators to personal health data sharing among those with one particular group of rare hematologic disorders, ie, sickle cell disorder (SCD) and its variants. Methods: A single online focus group among those >18 years of age and living with SCD was conducted. Participants (N=25) were recruited through a United Kingdom-based SCD charity. Discussions were transcribed verbatim, with data therein analyzed using inductive thematic analysis. Results: Five primary motivators for sharing health data were identified: improving awareness; knowing this would help others; evidencing impact; financial incentives; and being recognized as "experts with lived experience" rather than "specimens to be studied." Barriers included lack of clarity regarding "why" data was sought and "who" benefited. Participants stated that electronic health record (EHR) and genetic data were often "too detailed" and therefore "off limits" for sharing. However, experiences, mindset, and well-being data, often hidden from the EHR, were acceptable to share and considered a better barometer of how rare conditions treat patients day-to-day. Conclusions: Utilizing patient experience data obtained under real-world conditions is key to painting the most accurate picture of needs and understanding how SCD impacts patients' day-to-day lives. Study findings suggest that patients with SCD are not merely passive providers of health data, but rather experts by experience. To appreciate the value that patient perspectives bring, we must revisit this status quo, amending our approach to patient centricity and reframing patients as high-value managers of their condition and personal health data who crucially decide what, how, and when they share it.

An age-old problem or an old-age problem? A UK survey of attitudes, historical use and recommendations by healthcare professionals to use healthcare apps.

BACKGROUND: The coronavirus pandemic has exacerbated barriers to accessing face-to-face care. Consequently, the potential for digital health technologies (DHTs) to address unmet needs has gained traction. DHTs may circumvent several barriers to healthy independent living, resulting in both socioeconomic and clinical benefits. However, previous studies have demonstrated these benefits may be disproportionately realised among younger populations while excluding older people. METHODS: We performed a prospective survey using the One Poll market research platform among 2000 adults from the United Kingdom. To mitigate against self-selection bias, participants were not informed of the topic of the survey until they had completed recruitment. We compared willingness to use and historical use of health-apps, in addition to recommendations to use health-apps from healthcare professionals; comparing outcomes across all age groups, including a reference group (n = 222) of those aged 18-24. Outcomes were analysed using multivariate logistic regression and reported as odds ratios (OR) with respondent age, ethnicity, gender, and location as covariates. RESULTS: Willingness to use health-apps decreased significantly with age, reaching a minimum (OR = 0.39) among those aged 65 and over compared to the reference group of 18-24 year olds. Despite this, more than 52% of those aged 65 and over were willing to use health-apps. Functions and features most cited as useful by older populations included symptom self-monitoring and surgery recovery assistance. The likelihood of never having used a health-app also increased consistently with age, reaching a maximum among those aged 65 and over (OR = 18.3). Finally, the likelihood of being recommended health-apps by a healthcare professional decreased significantly with age, (OR = 0.09) for those aged 65 and over. In absolute terms, 33.8% of those aged 18-24, and 3.9% of those aged 65 and over were recommended health-apps by their healthcare professionals. CONCLUSION: Although absolute utilisation of health-apps decreases with age, the findings of this study suggest that the gap between those willing to use health-apps, and those being recommended health-apps by healthcare professionals increases with age. Given the increasing availability of evidence-based health-apps designed for older populations, this may result in entirely avoidable unmet needs, suggesting that more should be done by healthcare professionals to recommend health-apps to older persons who are generally positive about their use. This may result in considerable improvements in healthy and independent ageing.

Navigating Medical Device Certification: A Qualitative Exploration of Barriers and Enablers Amongst Innovators, Notified Bodies and Other Stakeholders.

BACKGROUND: Medical device certification has undergone significant changes in recent years. However, exploration of stakeholder experiences remains relatively limited, particularly in the context of software as a medical device. This study sought to explore stakeholder experiences of medical device certification across both the UK and EU. METHODS: Semi-structured interviews (n = 22) analysed using inductive-thematic analysis, synthesised using activity theory. RESULTS: Innovators, consultants and notified bodies share more similarities than differences when discussing barriers and enablers to achieving medical device certification. Systemic tensions between existing rules, tools, community understanding and division of labour currently undermine the intended aim of certification processes. Existing rules are considered complex, with small and medium-sized enterprises considered disproportionality affected, resulting in several unintended outcomes including the perceived 'killing' of innovation. Existing certification processes are described as unfit for purpose, unethical and unsustainable. CONCLUSION: Stakeholder experiences suggest that the intention of establishing a robust and sustainable regulatory framework capable of ensuring a high level of safety whilst also supporting innovation is not yet being realised. Failure to enact desired changes may further jeopardise future innovations, outcomes and care quality.

Wellbeing and Social Network Characteristics in Rural Communities: Findings from a Cohort in Social Housing in Cornwall, United Kingdom.

The mental wellbeing of those living in resource poor and rural localities is a public health priority. Despite evidence of a link between social networks and mental wellbeing, little is known about this relationship in the context of rural and resource poor environments. The current study uses novel social network methodology to investigate the extent to which social network size and composition is related to mental wellbeing in a social housing community in rural England. Data come from 88 individuals living in social housing in Cornwall. These participants are part of a larger study of 329 social housing households surveyed in 2017 and 2018. Mental wellbeing was measured by the Short Warwick-Edinburgh Mental Wellbeing Scale (SWEMWBS). A series of multivariable linear regression models were used to test associations between social network characteristics and mental wellbeing. Social network size was significantly associated with the SWEMWBS (b = 0.39, p < 0.01), such that individuals with larger networks reported better mental wellbeing, but after controlling for community social cohesion, this effect dissipated. Neither gender composition or talking with network members about health and wellbeing were significantly associated with the SWEMWBS. Findings suggest that both the quantity of social connections and perceptions of community cohesion are moderately associated with mental wellbeing in rural and resource poor localities. As such, efforts to improve mental wellbeing would benefit from targeting multiple aspects of social relationships, rather than focusing solely on increasing the size of individuals' social networks.

Meaningful patient and public involvement in digital health innovation, implementation and evaluation: A systematic review.

INTRODUCTION: The importance of meaningfully involving patients and the public in digital health innovation is widely acknowledged, but often poorly understood. This review, therefore, sought to explore how patients and the public are involved in digital health innovation and to identify factors that support and inhibit meaningful patient and public involvement (PPI) in digital health innovation, implementation and evaluation. METHODS: Searches were undertaken from 2010 to July 2020 in the electronic databases MEDLINE, EMBASE, PsycINFO, CINAHL, Scopus and ACM Digital Library. Grey literature searches were also undertaken using the Patient Experience Library database and Google Scholar. RESULTS: Of the 10,540 articles identified, 433 were included. The majority of included articles were published in the United States, United Kingdom, Canada and Australia, with representation from 42 countries highlighting the international relevance of PPI in digital health. 112 topic areas where PPI had reportedly taken place were identified. Areas most often described included cancer (n = 50), mental health (n = 43), diabetes (n = 26) and long-term conditions (n = 19). Interestingly, over 133 terms were used to describe PPI; few were explicitly defined. Patients were often most involved in the final, passive stages of an innovation journey, for example, usability testing, where the ability to proactively influence change was severely limited. Common barriers to achieving meaningful PPI included data privacy and security concerns, not involving patients early enough and lack of trust. Suggested enablers were often designed to counteract such challenges. CONCLUSIONS: PPI is largely viewed as valuable and essential in digital health innovation, but rarely practised. Several barriers exist for both innovators and patients, which currently limits the quality, frequency and duration of PPI in digital health innovation, although improvements have been made in the past decade. Some reported barriers and enablers such as the importance of data privacy and security appear to be unique to PPI in digital innovation. Greater efforts should be made to support innovators and patients to become meaningfully involved in digital health innovations from the outset, given its reported benefits and impacts. Stakeholder consensus on the principles that underpin meaningful PPI in digital health innovation would be helpful in providing evidence-based guidance on how to achieve this. PATIENT OR PUBLIC CONTRIBUTION: This review has received extensive patient and public contributions with a representative from the Patient Experience Library involved throughout the review's conception, from design (including suggested revisions to the search strategy) through to article production and dissemination. Other areas of patient and public contributor involvement include contributing to the inductive thematic analysis process, refining the thematic framework and finalizing theme wording, helping to ensure relevance, value and meaning from a patient perspective. Findings from this review have also been presented to a variety of stakeholders including patients, patient advocates and clinicians through a series of focus groups and webinars. Given their extensive involvement, the representative from the Patient Experience Library is rightly included as an author of this review.

Exploring Patient and Staff Experiences With Video Consultations During COVID-19 in an English Outpatient Care Setting: Secondary Data Analysis of Routinely Collected Feedback Data.

BACKGROUND: Video consultations (VCs) were rapidly implemented in response to COVID-19 despite modest progress before. OBJECTIVE: We aim to explore staff and patient experiences with VCs implemented during COVID-19 and use feedback insights to support quality improvement and service development. METHODS: Secondary data analysis was conducted on 955 patient and 521 staff responses (from 4234 consultations; 955/4234, 22.6% and 521/4234, 12.3%, respectively) routinely collected following a VC between June and July 2020 in a rural, older adult, and outpatient care setting at a National Health Service Trust. Responses were summarized using descriptive statistics and inductive thematic analysis and presented to Trust stakeholders. RESULTS: Most patients (890/955, 93.2%) reported having good (210/955, 22%) or very good (680/955, 71.2%) experience with VCs and felt listened to and understood (904/955, 94.7%). Most patients accessed their VC alone (806/955, 84.4%) except for those aged ≥71 years (23/58, 40%), with ease of joining VCs negatively associated with age (P<.001). Despite more difficulties joining, older adults were most likely to be satisfied with the technology (46/58, 79%). Patients and staff generally felt that patients' needs had been met (860/955, 90.1% and 453/521, 86.9%, respectively), although staff appeared to overestimate patient dissatisfaction with VC outcomes (P=.02). Patients (848/955, 88.8%) and staff (419/521, 80.5%) felt able to communicate everything they wanted, although patients were significantly more positive than staff (P<.001). Patient satisfaction with communication was positively associated with technical performance satisfaction (P<.001). Most staff members (466/521, 89.4%) reported positive (185/521, 35.5%) or very positive (281/521, 53.9%) experiences with joining and managing VCs. Staff reported reductions in carbon footprint (380/521, 72.9%) and time (373/521, 71.6%). Most patients (880/955, 92.1%) would choose VCs again. We identified three themes in responses: barriers, including technological difficulties, patient information, and suitability concerns; potential benefits, including reduced stress, enhanced accessibility, cost, and time savings; and suggested improvements, including trial calls, turning music off, photo uploads, expanding written character limit, supporting other internet browsers, and shared online screens. This routine feedback, including evidence to suggest that patients were more satisfied than clinicians had anticipated, was presented to relevant Trust stakeholders, allowing for improved processes and supporting the development of a business case to inform the Trust decision on continuing VCs beyond COVID-19 restrictions. CONCLUSIONS: The findings highlight the importance of regularly reviewing and responding to routine feedback following digital service implementation. The feedback helped the Trust improve the VC service, challenge clinician-held assumptions about patient experience, and inform future use of VCs. It has focused improvement efforts on patient information; technological improvements such as blurred backgrounds and interactive whiteboards; and responding to the needs of patients with dementia, communication or cognitive impairment, or lack of appropriate technology. These findings have implications for other health care providers.

The effectiveness of digital health technologies for patients with diabetes mellitus: A systematic review.

Introduction: Diabetes mellitus (DM) is a leading cause of morbidity and mortality worldwide. At the same time, digital health technologies (DHTs), which include mobile health apps (mHealth) have been rapidly gaining popularity in the self-management of chronic diseases, particularly following the COVID-19 pandemic. However, while a great variety of DM-specific mHealth apps exist on the market, the evidence supporting their clinical effectiveness is still limited. Methods: A systematic review was performed. A systematic search was conducted in a major electronic database to identify randomized controlled trials (RCTs) of mHealth interventions in DM published between June 2010 and June 2020. The studies were categorized by the type of DM and impact of DM-specific mHealth apps on the management of glycated haemoglobin (HbA1c) was analysed. Results: In total, 25 studies comprising 3,360 patients were included. The methodological quality of included trials was mixed. Overall, participants diagnosed with T1DM, T2DM and Prediabetes all demonstrated greater improvements in HbA1c as a result of using a DHT compared with those who experienced usual care. The analysis revealed an overall improvement in HbA1c compared with usual care, with a mean difference of -0.56% for T1DM, -0.90% for T2DM and -0.26% for Prediabetes. Conclusion: DM-specific mHealth apps may reduce HbA1c levels in patients with T1DM, T2DM and Prediabetes. The review highlights a need for further research on the wider clinical effectiveness of diabetes-specific mHealth specifically within T1DM and Prediabetes. These should include measures which go beyond HbA1c, capturing outcomes including short-term glycemic variability or hypoglycemic events.

Web-based internet searches for digital health products in the United Kingdom before and during the COVID-19 pandemic: a time-series analysis using app libraries from the Organisation for the Review of Care and Health Applications (ORCHA).

OBJECTIVES: To explore if consumer interest in digital health products (DHPs), changed following the COVID-19 pandemic and the lockdown measures that ensued. DESIGN: Retrospective time-series analysis of web-based internet searches for DHPs in the UK, split over two periods, pre-COVID-19 lockdown (January 2019-23 March 2020) and post-COVID-19 lockdown (24 March 2020-31 December 2020). SETTING: The UK. PARTICIPANTS: Members of the UK general population using health-app libraries provided by the Organisation for the Review of Care and Health Applications. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was volume of searches for DHPs. Secondary outcomes considered search volumes for 25 different therapeutic areas. Outcomes were assessed for significance using a two-stage Poisson test. RESULTS: There were 126 640 searches for DHPs over the study period. Searches for DHPs increased by 343% from 2446 per month prior to COVID-19 lockdown measures being introduced to 8996 per month in the period following the first COVID-19 lockdown in the UK. In total, 23/25 (92%) of condition areas experienced a significant increase in searches for DHPs, with the greatest increases occurring in the first 2 months following lockdown. Musculoskeletal conditions (2.036%), allergy (1.253%) and healthy living DHPs (1.051%) experienced the greatest increases in searches compared with pre-lockdown. Increased search volumes for DHPs were sustained in the 9 months following the introduction of lockdown measures, with 21/25 (84%) of condition areas experiencing monthly search volumes at least 50% greater than pre-lockdown levels. CONCLUSIONS: The COVID-19 pandemic has profoundly disrupted the routine delivery of healthcare, making face-to-face interaction difficult, and contributing to unmet clinical needs. This study has demonstrated significant increases in internet searches for DHPs by members of the UK population since COVID-19, signifying an increased interest in this potential therapeutic medium. Future research should clarify whether this increased interest has resulted in increased acceptance and utilisation of these technologies also.

Validation of Multisource Feedback in Assessing Medical Performance: A Systematic Review.

INTRODUCTION: Over the past 10 years, a number of systematic reviews have evaluated the validity of multisource feedback (MSF) to assess and quality-assure medical practice. The purpose of this study is to synthesize the results from existing reviews to provide a holistic overview of the validity evidence. METHODS: This review identified eight systematic reviews evaluating the validity of MSF published between January 2006 and October 2016. Using a standardized data extraction form, two independent reviewers extracted study characteristics. A framework of validation developed by the American Psychological Association was used to appraise the validity evidence within each systematic review. RESULTS: In terms of validity evidence, each of the eight reviews demonstrated evidence across at least one domain of the American Psychological Association's validity framework. Evidence of assessment validity within the domains of "internal structure" and "relationship to other variables" has been well established. However, the domains of content validity (ie, ensuring that MSF tools measure what they are intended to measure); consequential validity (ie, evidence of the intended or unintended consequences MSF assessments may have on participants or wider society), and response process validity (ie, the process of standardization and quality control in the delivery and completion of assessments) remain limited. DISCUSSION: Evidence for the validity of MSF has, across a number of domains, been well established. However, the size and quality of the existing evidence remains variable. To determine the extent to which MSF is considered a valid instrument to assess medical performance, future research is required to determine the following: (1) how best to design and deliver MSF assessments that address the identified limitations of existing tools and (2) how to ensure that involvement within MSF supports positive changes in practice. Such research is integral if MSF is to continue to inform medical performance and subsequent improvements in the quality and safety of patient care.

The impact of patient feedback on the medical performance of qualified doctors: a systematic review.

BACKGROUND: Patient feedback is considered integral to quality improvement and professional development. However, while popular across the educational continuum, evidence to support its efficacy in facilitating positive behaviour change in a postgraduate setting remains unclear. This review therefore aims to explore the evidence that supports, or refutes, the impact of patient feedback on the medical performance of qualified doctors. METHODS: Electronic databases PubMed, EMBASE, Medline and PsycINFO were systematically searched for studies assessing the impact of patient feedback on medical performance published in the English language between 2006-2016. Impact was defined as a measured change in behaviour using Barr's (2000) adaptation of Kirkpatrick's four level evaluation model. Papers were quality appraised, thematically analysed and synthesised using a narrative approach. RESULTS: From 1,269 initial studies, 20 articles were included (qualitative (n=8); observational (n=6); systematic review (n=3); mixed methodology (n=1); randomised control trial (n=1); and longitudinal (n=1) design). One article identified change at an organisational level (Kirkpatrick level 4); six reported a measured change in behaviour (Kirkpatrick level 3b); 12 identified self-reported change or intention to change (Kirkpatrick level 3a), and one identified knowledge or skill acquisition (Kirkpatrick level 2). No study identified a change at the highest level, an improvement in the health and wellbeing of patients. The main factors found to influence the impact of patient feedback were: specificity; perceived credibility; congruence with physician self-perceptions and performance expectations; presence of facilitation and reflection; and inclusion of narrative comments. The quality of feedback facilitation and local professional cultures also appeared integral to positive behaviour change. CONCLUSION: Patient feedback can have an impact on medical performance. However, actionable change is influenced by several contextual factors and cannot simply be guaranteed. Patient feedback is likely to be more influential if it is specific, collected through credible methods and contains narrative information. Data obtained should be fed back in a way that facilitates reflective discussion and encourages the formulation of actionable behaviour change. A supportive cultural understanding of patient feedback and its intended purpose is also essential for its effective use.

Can't Count or Won't Count? Embedding Quantitative Methods in Substantive Sociology Curricula: A Quasi-Experiment.

This paper reports on a quasi-experiment in which quantitative methods (QM) are embedded within a substantive sociology module. Through measuring student attitudes before and after the intervention alongside control group comparisons, we illustrate the impact that embedding has on the student experience. Our findings are complex and even contradictory. Whilst the experimental group were less likely to be distrustful of statistics and appreciate how QM inform social research, they were also less confident about their statistical abilities, suggesting that through 'doing' quantitative sociology the experimental group are exposed to the intricacies of method and their optimism about their own abilities is challenged. We conclude that embedding QM in a single substantive module is not a 'magic bullet' and that a wider programme of content and assessment diversification across the curriculum is preferential.