Factors affecting withdrawal and donation attrition in the brains for dementia research cohort.

OBJECTIVES: To measure two forms of attrition in a cohort of volunteer brain donors: Withdrawal during life and non-donation at death. To test whether cognitive impairment independently predicts attrition. METHOD: Attrition rates were calculated for all registered participants and for all brain donors who had completed a baseline and follow-up assessment of cognition, health, and lifestyle. Attrition reasons were described, and attrition rates were compared by gender, age group, and cognitive status. Multivariate logistic regression was used to identify the factors which independently predicted during life and at death. RESULTS: A total of 3276 brain donors registered and 2307 (70.4%) remained in the cohort. Attrition rate overall was 5.9% for withdrawal and 13.8% for donation. Family disagreement and the brain bank not being informed of participant death were the most common reasons for withdrawal and donation attrition. Withdrawal was associated with having cognitive impairment (OR 2.0 95% CI 1.1-3.5), increased age (OR 3.1 95% CI 1.4-6.9), and lower education (OR 1.8 95% CI 1.2-2.8). Participants exhibiting cognitive decline between assessments were more likely to withdraw (OR 4.9 95% CI 1.7-13.6). Participants living alone were almost twice as likely to die without donating (OR 1.9 95% CI 1.1-3.3). CONCLUSIONS: Attrition rates were relatively low, and consistent with other studies cognitive impairment, increased age, and less education predicted study withdrawal. Deaths of participants living alone were less likely to result in donation. Tailored, regular retention practices aimed at resolving family disagreement regarding donation decisions are required.

A pilot study of potential brain donor satisfaction and attitudes towards telephone assessment.

OBJECTIVE: Test the feasibility of assessing cognition, psychiatric symptoms and daily living skills of potential brain donors by telephone and compare satisfaction and attitudes across telephone and face-to-face assessment. METHOD: Data were collected from 108 healthy participants from the Brains for Dementia Research cohort. Purposive sampling was used to assess feasibility and a randomised control trial design compared satisfaction and attitudes towards telephone and face-to-face assessment. Non-parametric tests were conducted to compare groups, and logistic regression was performed to assess the relationship between satisfaction and participant characteristics. RESULTS: Of the 80 participants offered telephone assessment, 67 (83.8%) agreed, 2 (2.5%) had a significant hearing impairment, 4 (5.0%) had potential memory problems and 7 (8.7%) declined. On average, telephone assessments lasted 38 min and duration was negatively associated with Telephone Interview of Cognitive Status-Modified scores (p = 0.001) and positively associated with age (p = 0.040), Neuropsychiatric Inventory scores (p = 0.019), Geriatric Depression Scale (p = 0.035) and Global Deterioration Scale (p = 0.022). Satisfaction was high in respect to organisational and personal aspects; ratings did not differ significantly across telephone and face-to-face assessment groups and were not related to socio-demographic characteristics. Participants undergoing telephone assessment were significantly more likely to hold positive attitudes towards this mode of assessment. CONCLUSIONS: Telephone assessment is feasible, time-efficient and acceptable to healthy, potential brain donors. When used with other assessment modes and within the context of established contact, telephone assessment offers greater flexibility to researchers and participants and represents an effective mechanism for overcoming the challenges of growing, ageing cohorts and uncertain resources. Copyright © 2016 John Wiley & Sons, Ltd.

Developing a model for understanding patient collection of observations of daily living: A qualitative meta-synthesis of the Project HealthDesign Program.

We conducted a meta-synthesis of five different studies that developed, tested, and implemented new technologies for the purpose of collecting Observations of Daily Living (ODL). From this synthesis, we developed a model to explain user motivation as it relates to ODL collection. We describe this model that includes six factors that motivate patients' collection of ODL data: usability, illness experience, relevance of ODLs, information technology infrastructure, degree of burden, and emotional activation. We show how these factors can act as barriers or facilitators to the collection of ODL data and how interacting with care professionals and sharing ODL data may also influence ODL collection, health-related awareness, and behavior change. The model we developed and used to explain ODL collection can be helpful to researchers and designers who study and develop new, personal health technologies to empower people to improve their health.

Pandemic lifeworlds: A segmentation analysis of public responsiveness to official communication about Covid-19 in England.

Pandemics such as Covid-19 pose tremendous public health communication challenges in promoting protective behaviours, vaccination, and educating the public about risks. Segmenting audiences based on attitudes and behaviours is a means to increase the precision and potential effectiveness of such communication. The present study reports on such an audience segmentation effort for the population of England, sponsored by the United Kingdom Health Security Agency (UKHSA) and involving a collaboration of market research and academic experts. A cross-sectional online survey was conducted between 4 and 24 January 2022 with 5525 respondents (5178 used in our analyses) in England using market research opt-in panel. An additional 105 telephone interviews were conducted to sample persons without online or smartphone access. Respondents were quota sampled to be demographically representative. The primary analytic technique was k means cluster analysis, supplemented with other techniques including multi-dimensional scaling and use of respondent - as well as sample-standardized data when necessary to address differences in response set for some groups of respondents. Identified segments were profiled against demographic, behavioural self-report, attitudinal, and communication channel variables, with differences by segment tested for statistical significance. Seven segments were identified, including distinctly different groups of persons who tended toward a high level of compliance and several that were relatively low in compliance. The segments were characterized by distinctive patterns of demographics, attitudes, behaviours, trust in information sources, and communication channels preferred. Segments were further validated by comparing the segmentation variable versus a set of demographic variables as predictors of reported protective behaviours in the past two weeks and of vaccine refusal; the demographics together had about one-quarter the effect size of the single seven-level segment variable. With respect to managerial implications, different communication strategies for each segment are suggested for each segment, illustrating advantages of rich segmentation descriptions for understanding public health communication audiences. Strengths and weaknesses of the methods used are discussed, to help guide future efforts.

Feasibility of a caregiver-assisted exercise program for preterm infants.

Mounting evidence shows that low-birth-weight and prematurity are related to serious health problems in adulthood, including increased body fat, decreased fitness, poor bone mineralization, pulmonary problems, and cardiovascular disease. There are data to suggest that increasing physical activity in preterm infants will have effects on short-term muscle mass and fat mass, but we also hypothesized that increasing physical activity early in life can lead to improved health outcomes in adulthood. Because few studies have addressed the augmentation of physical activity in premature babies, the objective of this study was to evaluate the feasibility of whether caregivers (mostly mothers) can learn from nurses and other healthcare providers to implement a program of assisted infant exercise following discharge. Ten caregivers of preterm infants were taught by nurses, along with occupational therapists and other healthcare providers, to perform assisted infant exercise and instructed to conduct the exercises daily for approximately 3 weeks. The researchers made home visits and conducted qualitative interviews to understand the caregivers' experiences with this exercise protocol. Quantitative data included a caregiver's daily log of the exercises completed to measure adherence as well as videotaped caregiver sessions, which were used to record errors as a measure of proficiency in the exercise technique. On average, the caregivers completed a daily log on 92% of the days enrolled in the study and reported performing the exercises on 93% of the days recorded. Caregivers made an average of 1.8 errors on 2 tests (with a maximum of 23 or 35 items on each, respectively) when demonstrating proficiency in the exercise techniques. All caregivers described the exercises as beneficial for their infants, and many reported that these interventions fostered increased bonding with their babies. Nearly all reported feeling "scared" of hurting their babies during the first few days of home exercise but stated that fears were alleviated by practice in the home and further teaching and learning. Caregivers were willing and able to do the exercises correctly, and they expressed a belief that the intervention had positive effects on their babies and on caregiver-infant interactions. These findings have important implications for nursing practice because nurses are in key positions to teach and encourage caregivers to practice these exercises with their newborn babies.

Parents' perspectives on a smartwatch intervention for children with ADHD: Rapid deployment and feasibility evaluation of a pilot intervention to support distance learning during COVID-19.

Distance learning in response to the COVID-19 pandemic presented tremendous challenges for many families. Parents were expected to support children's learning, often while also working from home. Students with Attention Deficit Hyperactivity Disorder (ADHD) are at particularly high risk for setbacks due to difficulties with organization and increased risk of not participating in scheduled online learning. This paper explores how smartwatch technology, including timing notifications, can support children with ADHD during distance learning due to COVID-19. We implemented a 6-week pilot study of a Digital Health Intervention (DHI) with ten families. The DHI included a smartwatch and a smartphone. Google calendars were synchronized across devices to guide children through daily schedules. After the sixth week, we conducted parent interviews to understand the use of smartwatches and the impact on children's functioning, and we collected physiological data directly from the smartwatch. Our results demonstrated that children successfully adopted the use of the smartwatch, and parents believed the intervention was helpful, especially in supporting the development of organizational skills in their children. Overall, we illustrate how even simple DHIs, such as using smartwatches to promote daily organization and task completion, have the potential to support children and families, particularly during periods of distance learning. We include practical suggestions to help professionals teach children with ADHD to use smartwatches to improve organization and task completion, especially as it applies to supporting remote instruction.

Brains for Dementia Research: Evolution in a Longitudinal Brain Donation Cohort to Maximize Current and Future Value.

Brain banking has a long and distinguished past, contributing greatly to our understanding of human neurological and psychiatric conditions. Brain banks have been operationally diverse, collecting primarily end stage disease, with variable quality clinical data available, yet it is now recognized the most informative brain donations are from those in longitudinally studied cohorts. The Brains for Dementia Research (BDR) cohort and program was for planned brain donation across five UK brain banks and one donation point, with standardized operating procedures, following longitudinal clinical and psychometric assessments for people with no cognitive impairment as well as those with dementia. Lay representatives with experience of dementia were involved from inception of BDR and 74.5% of all enquiries about participation came through routes that were directly attributable to or influenced by lay representatives. Ten years after inception, this ongoing project has received over 700 brain donations from the recruited cohort of 3,276 potential brain donors. At cohort census for this paper, 72.2% of the living cohort have no cognitive impairment by assessment, whereas only 28.3% of the donated cohort were without cognitive impairment. It is important that brain banks are agile and reflect the changing needs of the research community, given that 'big data', readiness cohorts, and GWAS demand large sample numbers of highly characterized individuals to facilitate new approaches and understanding of pathological processes in dementia.

Ticking boxes or meaningful partnership - The experience of lay representation, participant and study partner involvement in Brains for Dementia Research.

Brains for Dementia Research is a planned brain donation project with serial assessments during life. Lay input helped conceive and shape Brains for Dementia Research and over time a growing number of lay volunteers have engaged with the project in almost all areas of activity. Lay representatives serve on the management and tissue banking committees, have spoken at recruitment and team events, and have reviewed all public and participant facing communications. Recruitment and retention has been greatly facilitated through lay involvement with community organisations and creating regional/national media opportunities. The experience of Brains for Dementia Research has been that involvement of the public and study participants has the greatest positive impact on study outcomes when the relationship is a genuine partnership. Purposeful inclusivity allows lay people to contribute in situations where professionals might otherwise dominate. Maintaining an environment where both lay and professional staff can think creatively, express ideas and opinions, problem-solve and work well together has had a synergistic effect on project outcomes. Ensuring good communication between the various professionals and lay representatives has also been part of the success in keeping the cohort flexible and able to respond to the changing landscape of clinical trials, the emergence of 'big data' and to maximise the future potential of the cohort. Our lay representatives may also be study participants, study partners, or have personal experience of dementia and bring an energy, enthusiasm and commitment to what they do, that in turn encourages the professional team.

Supplementing Public Health Inspection via Social Media.

Foodborne illness is prevented by inspection and surveillance conducted by health departments across America. Appropriate restaurant behavior is enforced and monitored via public health inspections. However, surveillance coverage provided by state and local health departments is insufficient in preventing the rising number of foodborne illness outbreaks. To address this need for improved surveillance coverage we conducted a supplementary form of public health surveillance using social media data: Yelp.com restaurant reviews in the city of San Francisco. Yelp is a social media site where users post reviews and rate restaurants they have personally visited. Presence of keywords related to health code regulations and foodborne illness symptoms, number of restaurant reviews, number of Yelp stars, and restaurant price range were included in a model predicting a restaurant's likelihood of health code violation measured by the assigned San Francisco public health code rating. For a list of major health code violations see (S1 Table). We built the predictive model using 71,360 Yelp reviews of restaurants in the San Francisco Bay Area. The predictive model was able to predict health code violations in 78% of the restaurants receiving serious citations in our pilot study of 440 restaurants. Training and validation data sets each pulled data from 220 restaurants in San Francisco. Keyword analysis of free text within Yelp not only improved detection of high-risk restaurants, but it also served to identify specific risk factors related to health code violation. To further validate our model we applied the model generated in our pilot study to Yelp data from 1,542 restaurants in San Francisco. The model achieved 91% sensitivity 74% specificity, area under the receiver operator curve of 98%, and positive predictive value of 29% (given a substandard health code rating prevalence of 10%). When our model was applied to restaurant reviews in New York City we achieved 74% sensitivity, 54% specificity, area under the receiver operator curve of 77%, and positive predictive value of 25% (given a prevalence of 12%). Model accuracy improved when reviews ranked highest by Yelp were utilized. Our results indicate that public health surveillance can be improved by using social media data to identify restaurants at high risk for health code violation. Additionally, using highly ranked Yelp reviews improves predictive power and limits the number of reviews needed to generate prediction. Use of this approach as an adjunct to current risk ranking of restaurants prior to inspection may enhance detection of those restaurants participating in high risk practices that may have gone previously undetected. This model represents a step forward in the integration of social media into meaningful public health interventions.

Integrating Patient-Generated Health Data Into Clinical Care Settings or Clinical Decision-Making: Lessons Learned From Project HealthDesign.

BACKGROUND: Patient-generated health data (PGHD) are health-related data created or recorded by patients to inform their self-care and understanding about their own health. PGHD is different from other patient-reported outcome data because the collection of data is patient-driven, not practice- or research-driven. Technical applications for assisting patients to collect PGHD supports self-management activities such as healthy eating and exercise and can be important for preventing and managing disease. Technological innovations (eg, activity trackers) are making it more common for people to collect PGHD, but little is known about how PGHD might be used in outpatient clinics. OBJECTIVE: The objective of our study was to examine the experiences of health care professionals who use PGHD in outpatient clinics. METHODS: We conducted an evaluation of Project HealthDesign Round 2 to synthesize findings from 5 studies funded to test tools designed to help patients collect PGHD and share these data with members of their health care team. We conducted semistructured interviews with 13 Project HealthDesign study team members and 12 health care professionals that participated in these studies. We used an immersion-crystallization approach to analyze data. Our findings provide important information related to health care professionals' attitudes toward and experiences with using PGHD in a clinical setting. RESULTS: Health care professionals identified 3 main benefits of PGHD accessibility in clinical settings: (1) deeper insight into a patient's condition; (2) more accurate patient information, particularly when of clinical relevance; and (3) insight into a patient's health between clinic visits, enabling revision of care plans for improved health goal achievement, while avoiding unnecessary clinic visits. Study participants also identified 3 areas of consideration when implementing collection and use of PGHD data in clinics: (1) developing practice workflows and protocols related to PGHD collection and use; (2) data storage, accessibility at the point of care, and privacy concerns; and (3) ease of using PGHD data. CONCLUSIONS: PGHD provides value to both patients and health care professionals. However, more research is needed to understand the benefit of using PGHD in clinical care and to identify the strategies and clinic workflow needs for optimizing these tools.

Organizational routines, innovation, and flexibility: the application of narrative networks to dynamic workflow.

OBJECTIVE: The purpose of this paper is to demonstrate how current visual representations of organizational and technological processes do not fully account for the variability present in everyday practices. We further demonstrate how narrative networks can augment these representations to indicate potential areas for successful or problematic adoption of new technologies and potential needs for additional training. METHODS: We conducted a qualitative study of the processes and routines at a major academic medical center slated to be supported by the development and installation of a new comprehensive HIT system. We used qualitative data collection techniques including observations of the activities to be supported by the new system and interviews with department heads, researchers, and both clinical and non-clinical staff. We conducted a narrative network analysis of these data by choosing exemplar processes to be modeled, selecting and analyzing narrative fragments, and developing visual representations of the interconnection of these narratives. RESULTS: Narrative networks enable us to view the variety of ways work has been and can be performed in practice, influencing our ability to design for innovation in use. DISCUSSION: Narrative networks are a means for analyzing and visualizing organizational routines in concert with more traditional requirements engineering, workflow modeling, and quality improvement outcome measurement. This type of analysis can support a deeper and more nuanced understanding of how and why certain routines continue to exist, change, or stop entirely. At the same time, it can illuminate areas in which adoption may be slow, more training or communication may be needed, and routines preferred by the leadership are subverted by routines preferred by the staff.

Improving communication between patients and providers using health information technology and other quality improvement strategies: focus on Asian Americans.

Disparities in provider-patient communication have been shown to exist among Asian Americans, especially those who are low-income and have limited English proficiency. These disparities have resulted in unmet health care needs and poor quality care. To identify strategies for improving provider-patient communication in this population, we conducted a systematic review of the literature and in-depth interviews with key informants. Little published literature on interventions focused on Asian Americans was found. Most interventions were conducted among White populations and occurred in the waiting room before patients' visits with their providers. Interventions ranged from a leaflet encouraging patients to ask more questions, to more intensive face-to-face coaching before office visits. Health information technology (health IT) has not been widely used to improve communication, especially among patients with limited English proficiency. More research is needed using new health IT strategies to improve care for Asian Americans and other vulnerable populations.

Improving communication between patients and providers using health information technology and other quality improvement strategies: focus on low-income children.

Effective communication between providers and patients has been linked to improved outcomes. Previous reviews of quality improvement strategies, including health information technology (health IT), have not focused on the needs of low-income children. The authors conducted a systematic review of the literature on studies of communication surrounding the care of low-income children, with an emphasis on interventions and health IT.The search yielded six studies that focused on low-income children; three of the studies used health IT. Key informant interviews provided insight to the current use of health IT for provider-patient communication in geographically diverse, underresourced settings.The authors identify gaps between existing literature and clinical practice. Future research should focus on the specific impact of health IT in pediatric medicine, particularly in underresourced and safety net settings. These efforts should focus on the use of technological innovations to improve care for low-income children and their families.