Machine Learning and Gene Editing at the Helm of a Societal Evolution.

The integration of artificial intelligence (AI) and biotechnology, whilst in its infancy, presents significant opportunities and risks, and proactive policy is needed to manage these emerging technologies. Whilst AI continues to have significant and broad impact, its relevance and complexity magnify when integrated with other emerging technologies. The confluence of Machine Learning (ML), a subset of AI, with gene editing (GE) in particular can foster substantial benefits as well as daunting risks that range from ethics to national security. These complex technologies have implications for multiple sectors, ranging from agriculture and medicine to economic competition and national security. Consideration of technology advancements and policies in different geographic regions, and involvement of multiple organisations further confound this complexity. As the impact of ML and GE expands, forward looking policy is needed to mitigate risks and leverage opportunities. Thus, this study explores the technological and policy implications of the intersection of ML and GE, with a focus on the United States (US), the United Kingdom (UK), China, and the European Union (EU). Analysis of technical and policy developments over time and an assessment of their current state have informed policy recommendations that can help manage beneficial use of technology advancements and their convergence, which can be applied to other sectors. This study is intended for policymakers to prompt reflection on how to best approach the convergence of the two technologies. Technical practitioners may also find it valuable as a resource to consider the type of information and policy stakeholders engage with.

The Societal and Indirect Economic Burden of Seasonal Influenza in the United Kingdom.

Seasonal influenza is a significant public-health issue. In the UK, the influenza season is associated with an increased demand for and pressure on the NHS. The direct health and economic impacts of seasonal influenza have received much attention. However, less attention has been given to its broader societal burden, including its indirect economic impact. We first conducted a rapid evidence assessment of the literature to understand the societal burden of seasonal influenza in the UK. Secondly, we conducted analyses of publicly available, aggregated data from NHS England and NHS Digital to better understand the impact of seasonal influenza on the provision of NHS services both before and after the COVID-19 pandemic. We also conducted a geographically representative survey of 1,000 working-age adults across the UK, who reported having influenza or caring for a dependent with influenza during at least one of the past four influenza seasons to understand impacts related to absenteeism and presenteeism in the workplace, lost wages and out-of-pocket costs. Fourthly, we conducted interviews with 20 key stakeholders within the NHS from primary care and secondary care across the four UK nations. Lastly, we used an epidemiologic-economic framework to estimate the number of influenza cases and then applied a macro-economic computable general equilibrium model to estimate the indirect economic costs associated with lost economic productivity among working-age adults who become ill with influenza.

Characterizing blood pressure trajectories in people living with HIV following antiretroviral therapy: A systematic review.

OBJECTIVES: The advent of antiretroviral therapy (ART) has reduced AIDS-related morbidity and mortality among people living with HIV (PLWH). Due to increased survival, PLWH have now been found to be at risk of chronic conditions related to ageing, such as cardiovascular disease (CVD). Hypertension is common in PLWH and is a major risk factor for the development of CVD. We conducted a systematic literature review to evaluate the research evidence on longitudinal blood pressure (BP) trajectories following ART initiation in PLWH. METHODS: We searched the following databases: PubMed, CINHAL, Scopus, and Web of Science (up to 15 March 2021) for peer-reviewed published studies that reported BP trajectories following ART initiation in PLWH. Three reviewers independently screened all studies by title and abstract. We included articles in English, published up to March 2021, that report office BP trajectories in PLWH initiating ART. A total of 10 publications met our inclusion criteria. Eight studies were prospective cohorts and two were retrospective. RESULTS: Nine out of 10 studies in the literature reported an increase in systolic BP (4.7-10.0 mmHg in studies with a follow-up range of 6 months to 8 years, and 3.0-4.7 mmHg/year in time-averaged studies). In addition, four out of 10 studies reported increases in diastolic BP (2.3-8.0 mmHg for a 6 month to 6.8-year follow-up range and 2.3 mmHg/year). CONCLUSION: Systolic BP consistently increases while diastolic BP changes are more heterogeneous following ART initiation in PLWH. However, the studies were highly variable with respect to population demographics, ART regimen and duration, and follow-up time. Nevertheless, given the risks of CVD complications, such as stroke, heart failure and myocardial infarction, associated with elevated BP, results highlight the importance of future research in this area. It will be important to better characterize BP trajectories over time, identify the most critical times for interventions to reduce BP, determine the long-term CVD consequences in PLWH with elevated BP, and understand how different ART regimens may or may not influence BP and CVD disease.

A thematic analysis of YouTube comments on a television documentary titled 'Diabulimia: The World's most dangerous eating disorder'.

AIM: Omitting insulin for fear of weight gain is a type of disordered eating (also labelled as diabulimia) common in type 1 diabetes (T1D) and is associated with a worse biomedical prognosis but is not a formally recognised condition. This research explored the public's opinion of diabulimia as a condition as presented in a television documentary. METHODS: We conducted a coding reliability thematic analysis using NVivo software of the original comments to a YouTube documentary 'Diabulimia: The World's Most Dangerous Eating Disorder' between 24 September 2017 and 16 June 2020. RESULTS: Of 1424 original comments, 1264 were eligible and uploaded into NVivo 12. The commenters were people with T1D, family and friends, health care professionals, and the wider public who collectively had questions, personal stories and/or opinions. Three main themes were discerned: lack of awareness of diabulimia as a condition; the importance of support; diabulimia as a psychiatric condition in the diabetes setting. CONCLUSION: This analysis of social media comments found that there is a lack of awareness of diabulimia amongst patients, their families and friends, and healthcare professionals and that there were many commenters who had the experience of disordered eating with T1D. This study has reported on themes that suggest there may be an eating disorder specifically in people with T1D and that further work is needed to understand the diagnostic criteria for diabulimia in order to develop effective treatments.

Faecal microbiota transplantation for recurrent C. difficile infections: challenges and improvement opportunities for clinical practice and healthcare systems.

BACKGROUND: There is growing interest in faecal microbiota transplantation (FMT) as a treatment for recurrent Clostridioides difficile infection (CDI), but evidence on the diverse requirements for safe, effective and accessible services is fragmented and limited. AIMS: To identify key components of FMT provision relating to the patient care pathway, stool donor pathway and wider healthcare system, and to explore variation in practice METHODS: We conducted a narrative review of the literature and consultations with key clinical experts in the field. Evidence is drawn from high-income country contexts, with an emphasis on Australia, Canada, Italy and the United Kingdom as case example countries. RESULTS: We identify and discuss key challenges to do with healthcare capacity (workforce, FMT and stool banking facilities), donors and donations, patient access and choice of FMT delivery routes, regulation, costs and reimbursement. We also identify improvement opportunities to increase awareness of FMT and referral processes, physician training, maintaining patient registries and outcome monitoring metrics, in-country regulatory harmonisation and tackling reimbursement challenges and discuss future research needs. CONCLUSION: Effectively bringing FMT to patients in a healthcare system requires much more than just the existence of a clinically effective procedure. With FMT being a potentially effective treatment option for recurrent CDI for many patients, a well-rounded understanding of how appropriate FMT capacity can be built and nurtured is important for both healthcare providers and policymakers seeking to improve patient care.

Revisiting agency and medical health technology: actor network theory and breast cancer survivors' perspectives on an adherence tool.

Purpose: Optimal treatment adherence is critical in the management of breast cancer patients/survivors taking hormonal therapy. However, lack of adherence is common. Many technologies have been developed to encourage medication intake, such as reminders on phones or digital pills, with varying degrees of success. Methods: To explore the role of technology in medical adherence requires a framework that considers all complexities of technology, from software to the end user's beliefs. Actor Network Theory (ANT) defines technology based on its technical, social, and abstract components. We conducted three focus groups, which we analyzed using a thematic analysis to determine topics in breast cancer survivors' discussions of these technologies. We also conducted a deductive content analysis using ANT concepts as codes. Results: In discussing the use of technology to improve medical adherence, participants had an empowering view of technology (48.8%) a neutral one (41.5%) or a disempowering view (9.8%). When it comes to their medication adherence, breast cancer survivors taking hormonal therapy perceived technology as something on which they could assert agency while their own agency dictated their adherence behaviors. Conclusions: In line with a non-technologically deterministic view of medical technologies, this finding shows that technology can be both constraining and enabling, depending on the specific context of human use. This networked understanding of technology in terms of social dynamics has relevant implications in designing interventions that use technology to improve adherence.

Improving care for patients with Clostridioides difficile infection: A clinical practice and healthcare systems perspective.

Introduction: Arriving at a C. difficile infection (CDI) diagnosis, treating patients and dealing with recurrences is not straightforward, but a comprehensive and well-rounded understanding of what is needed to improve patient care is lacking. This manuscript addresses the paucity of multidisciplinary perspectives that consider clinical practice related and healthcare system-related challenges to optimizing care delivery. Methods: We draw on narrative review, consultations with clinical experts and patient representatives, and a survey of 95 clinical and microbiology experts from the UK, France, Italy, Australia and Canada, adding novel multi-method evidence to the knowledge base. Results and discussion: We examine the patient pathway and variations in clinical practice and identify, synthesize insights on and discuss associated challenges. Examples of key challenges include the need to conduct multiple tests for a conclusive diagnosis, treatment side-effects, the cost of some antibiotics and barriers to access of fecal microbiota transplantation, difficulties in distinguishing recurrence from new infection, workforce capacity constraints to effective monitoring of patients on treatment and of recurrence, and ascertaining whether a patient has been cured. We also identify key opportunities and priorities for improving patient care that target both clinical practice and the wider healthcare system. While there is some variety across surveyed countries' healthcare systems, there is also strong agreement on some priorities. Key improvement actions seen as priorities by at least half of survey respondents in at least three of the five surveyed countries include: developing innovative products for both preventing (Canada, Australia, UK, Italy, and France) and treating (Canada, Australia, and Italy) recurrences; facilitating more multidisciplinary patient care (UK, Australia, and France); updating diagnosis and treatment guidelines (Australia, Canada, and UK); and educating and supporting professionals in primary care (Italy, UK, Canada, and Australia) and those in secondary care who are not CDI experts (Italy, Australia, and France) on identifying symptoms and managing patients. Finally, we discuss key evidence gaps for a future research agenda.

Providers' Perspectives on Adherence to Hormonal Therapy in Breast Cancer Survivors. Is there a Role for the Digital Health Feedback System?

OBJECTIVE: Despite the benefits of hormonal therapy (HT) adherence remains suboptimal in ER positive breast cancer patients. Medication adherence is challenging to assess and tends to be overestimated. The Digital Health Feedback System (DHFS) consists of an ingestible sensor attached to a pill that sends intake date and time to a smart phone or computer. Patients can share this information with health care providers and other persons. The DHFS can also send reminders. This mixed methods study examined providers' perceptions of HT medication adherence. The potential role of the DHFS in enhancing medication tracking and adherence was also explored. METHODS: We conducted semi-structured interviews with key informants (N=10). Questions examined perceptions about adherence barriers and facilitators, challenges tracking adherence, and views on the DHFS. Findings informed the development of a survey that was administered online (N=19). RESULTS: Providers emphasized the importance of fostering open and trustful communication around adherence. The most mentioned challenges to assessing adherence were the patient not disclosing discontinuation immediately (78.9%) and over-reporting adherence (57.9%). The perceived potential benefits of DHFS were the ability to track adherence better (94.7%) and reminders to take the medication (68.4%). Safety to ingest a sensor was as a major perceived barrier (8 4.2%). CONCLUSION: Interventions that target providers and doctor-patient communication are warranted to enhance adherence and reduce communication delays around HT discontinuation. PRACTICE IMPLICATIONS: DHFS has the potential to enhance HT adherence by directly targeting barriers. Future studies should also examine the feasibility of adopting the DHFS with cancer patients.

Spirituality in African-American Breast Cancer Patients: Implications for Clinical and Psychosocial Care.

Spirituality has been shown to be important to many individuals dealing with a cancer diagnosis. While African-American breast cancer survivors have been reported to have higher levels of spirituality compared to White women, little is known about how levels of spirituality may vary among African-American breast cancer survivors. The aims of this study were to examine factors associated with spirituality among African-American survivors and test whether spirituality levels were associated with women's attitudes about treatment or health care. The primary outcome, spirituality, was nine-item scale (Cronbach's α = .99). Participants completed standardized telephone interviews that captured sociocultural, healthcare process, and treatment attitudes. Medical records were abstracted post-adjuvant therapy for treatment and clinical information. In bivariate analysis, age was not correlated with spirituality (p = .40). Married/living as married women had higher levels of spirituality (m = 32.1) than single women (m = 30.1). Contextual factors that were associated with higher levels spirituality were: collectivism (r = .44; p < 0.0001, Afrocentric worldview (r = .185; p = .01), and self-efficacy scale (r = .17; p = .02). In multivariable analysis, sociodemographic factors were not significant. Collectivism remained a robust predictor (p < 0.0001). Attitudes about the efficacy of cancer treatment were not associated with spirituality. The high levels of spirituality in African-American survivors suggest consideration of integrating spiritual care within the delivery of cancer treatment. Future studies should consider how spirituality may contribute to positive coping and/or behaviors in African-American women with high levels of spirituality.

Sentiment Analysis of an Online Breast Cancer Support Group: Communicating about Tamoxifen.

A better understanding of the breast cancer online narrative is important for a clearer conceptualizing of the role of online platforms in mediating health-related support. Sentiment analysis was conducted on a breast cancer online support group regarding Tamoxifen to understand users' emotions and opinions. This analysis was then contextualized within online social support literature. Out of the 498 users, the most active users were 80% more positive than least active users, while least active users were 48% more negative than most active ones; both differences were statistically significant. The higher the stage of cancer a user had, the less likelihood that she would have posted, and if she were to post, the post would have focused on her side effects and the anxiety/sadness that tailgates those side effects. The lower the stage of cancer a user had, the more likelihood that she would have posted, additionally remained active on the forum, and encouraged more (online) social support. This finding suggests that the online support platform may provide a context that exacerbates support for like-minded users where stronger ties are created around a specific sentiment within the community with less connection from those with dissimilar sentiments to the dominant group.

Behavioral Interventions to Enhance Adherence to Hormone Therapy in Breast Cancer Survivors: A Systematic Literature Review.

Adjuvant hormone therapy contributes to reductions in recurrence and mortality for women with hormone receptor-positive breast cancer. However, adherence to hormone therapy is suboptimal. This is the first systematic literature review examining interventions aimed at improving hormone therapy adherence. Researchers followed the PRISMA guidelines. PubMed-Medline, CINAHL, PsychInfo, Ovid-Medline, and EMBASE were searched for behavioral interventions that aimed to enhance adherence to adjuvant hormone therapy in breast cancer survivors. A total of 376 articles were screened for eligibility. Five articles met the study criteria. All interventions presented adherence outcomes after 1-year follow-up. None significantly enhanced adherence compared to the usual care in the primary analysis (odds ratios ranged from 1.03 to 2.06 for adherence and from 1.11 to 1.18 for persistence). All studies targeted patients, and only 3 studies included postmenopausal breast cancer patients. Three tested the same intervention consisting of educational materials. Only one was conducted in the United States. Only one reported participants' ethnicity. Overall, it was unclear whether the studies contained bias. The use of different terminology and operationalization of adherence made comparisons challenging. Interventions to improve adherence to adjuvant hormone therapy in US breast cancer populations that include survivors who are ethnically diverse, premenopausal, and receiving tamoxifen therapy are necessary to inform future interventions. Adoption of consistent adherence definitions/measurements will provide a clearer framework to consolidate aggregate findings. Given the limited efficacy of tested interventions, it is important to engage oncologists and researchers to develop approaches that target different components associated with hormone therapy adherence, such as doctor-patient communication or social support.

Reducing Racial Disparities in Breast Cancer Survivors' Ratings of Quality Cancer Care: The Enduring Impact of Trust.

PURPOSE: Patient satisfaction provides an important illumination of the quality of care that is delivered. Satisfaction with care is often lower in Black women compared with their non-Hispanic White counterparts. Data are lacking regarding quality ratings of breast cancer patients. We examined racial disparities in ratings of the quality of cancer care in newly diagnosed Black (n = 217) and White (n = 152) patients. METHODS: This was a cross-sectional observational study. Patients were recruited through hospitals and community outreach. Women with primary invasive, nonmetastatic breast cancer were eligible. Trained interviewers administered a standardized survey through telephone; clinical data were abstracted from medical records. The primary outcome, healthcare quality, was assessed using the PSQ-18, which assessed patients' ratings regarding four healthcare domains: interpersonal care, financial issues, technical ratings of physicians, and access and convenience. Independent variables included healthcare factors (e.g., suspicion toward the healthcare system), psychosocial factors (e.g., physicians' solicitation behaviors), and socioeconomic factors (e.g., limited access to resources). Multiple linear regression was used to evaluate associations between each healthcare quality domain and independent variables. RESULTS: In univariate analysis, Black women reported lower ratings for four domains: technical (Black m = 3.99; White m = 4.26; p < .001), interpersonal (Black m = 4.15, White m = 4.35; p < .01), financial (Black m = 3.81, White m = 4.0, p < .001), and access and convenience (Black m = 3.92, White m = 4.08, p < .01). After adjusting for healthcare characteristics and psychosocial factors, trust in providers was significantly associated with three domains (ß = 0.085, p < .001, technical; ß = 0.066, p < .0001, interpersonal; ß = 0.043, p < .0001, financial). CONCLUSION: Racial disparities in ratings of healthcare quality were diminished across several domains after controlling for psychosocial and healthcare factors. Strategies aimed at improving self-efficacy in women with higher levels of mistrust may improve patient satisfaction.

Trauma-Exposed Latina Immigrants' Networks: A Social Network Analysis Approach.

OBJECTIVE: Trauma exposure among Latina immigrants is common. Social support networks can buffer the impact of trauma on mental health. This study characterizes the social networks of trauma-exposed Latina immigrants using a social network analysis perspective. METHODS: In 2011-2012 a convenience sample (n=28) of Latina immigrants with trauma exposure and presumptive depression or posttraumatic stress disorder was recruited from a community clinic in Washington DC. Participants completed a social network assessment and listed up to ten persons in their network (alters). E-Net was used to describe the aggregate structural, interactional, and functional characteristics of networks and Node-XL was used in a case study to diagram one network. RESULTS: Most participants listed children (93%), siblings (82%), and friends (71%) as alters, and most alters lived in the US (69%). Perceived emotional support and positive social interaction were higher compared to tangible, language, information, and financial support. A case study illustrates the use of network visualizations to assess the strengths and weaknesses of social networks. CONCLUSIONS: Targeted social network interventions to enhance supportive networks among trauma-exposed Latina immigrants are warranted.

Rethinking agency and medical adherence technology: applying Actor Network Theory to the case study of Digital Pills.

Much literature surrounding medical technology and adherence posits that technology is a mechanism for social control. This assumes that the medical establishment can take away patients' agency. Although power relationships and social control can play a key role, medical technology can also serve as an agentive tool to be utilized. We (1) offer the alternative framework of Actor Network Theory to view medical technology, (2) discuss the literature on medication adherence and technology, (3) delve into the ramifications of looking at adherence as a network and (4) use Digital Pills as a case study of dispersed agency.