Sharing real-world data for public benefit: a qualitative exploration of stakeholder views and perceptions.

BACKGROUND: There has been an increasing interest in the use of "real-world" data to inform care decision making that could lead to public health benefit. Routinely collected service and activity data associated with the administration of care services and service-users (such as electronic health records or electronic social care records), hold potential to better inform effective and responsive decision-making about health and care services provided to national and local populations. This study sought to gain an in-depth understanding regarding the potential to unlock real world data that was held in individual organisations, to better inform public health decision-making. This included sharing data between and within health service providers and local governing authorities, but also with university researchers to inform the evidence base. METHODS: We used qualitative methods and carried out a series of online workshops and interviews with stakeholders (senior-level decision-makers and service leads, researchers, data analysts, those with a legal and governance role, and members of the public). We identified recurring themes in initial workshops, and explored these with participants in subsequent workshops. By this iterative process we further refined the themes identified, compared views and perceptions amongst different stakeholder groups, and developed recommendations for action. RESULTS: Our study identified key elements of context and timing, the need for a different approach, and obstacles including governmental and legal, organisational features, and process factors which adversely affect the sharing of real world data. The findings also highlighted a need for improved communication about data for secondary uses to members of the public. CONCLUSION: The Covid-19 pandemic context and changes to organisational structures in the health service in England have provided opportunities to address data sharing challenges. Change at national and local level is required, within current job roles and generating new jobs roles focused on the use and sharing of real-world data. The study suggests that actions can be taken to unlock the potential of real-world data for public health benefit, and provides a series of recommendations at a national level, for organisational leaders, those in data roles and those in public engagement roles.

Informing the Design of "Lifestyle Monitoring" Technology for the Detection of Health Deterioration in Long-Term Conditions: A Qualitative Study of People Living With Heart Failure.

BACKGROUND: Health technologies are being developed to help people living at home manage long-term conditions. One such technology is "lifestyle monitoring" (LM), a telecare technology based on the idea that home activities may be monitored unobtrusively via sensors to give an indication of changes in health-state. However, questions remain about LM technology: how home activities change when participants experience differing health-states; and how sensors might capture clinically important changes to inform timely interventions. OBJECTIVE: The objective of this paper was to report the findings of a study aimed at identifying changes in activity indicative of important changes in health in people with long-term conditions, particularly changes indicative of exacerbation, by exploring the relationship between home activities and health among people with heart failure (HF). We aimed to add to the knowledge base informing the development of home monitoring technologies designed to detect health deterioration in order to facilitate early intervention and avoid hospital admissions. METHODS: This qualitative study utilized semistructured interviews to explore everyday activities undertaken during the three health-states of HF: normal days, bad days, and exacerbations. Potential recruits were identified by specialist nurses and attendees at an HF support group. The sample was purposively selected to include a range of experience of living with HF. RESULTS: The sample comprised a total of 20 people with HF aged 50 years and above, and 11 spouses or partners of the individuals with HF. All resided in Northern England. Participant accounts revealed that home activities are in part shaped by the degree of intrusion from HF symptoms. During an exacerbation, participants undertook activities specifically to ease symptoms, and detailed activity changes were identified. Everyday activity was also influenced by a range of factors other than health. CONCLUSIONS: The study highlights the importance of careful development of LM technology to identify changes in activities that occur during clinically important changes in health. These detailed activity changes need to be considered by developers of LM sensors, platforms, and algorithms intended to detect early signs of deterioration. Results suggest that for LM to move forward, sensor set-up should be personalized to individual circumstances and targeted at individual health conditions. LM needs to take account of the uncertainties that arise from placing technology within the home, in order to inform sensor set-up and data interpretation. This targeted approach is likely to yield more clinically meaningful data and address some of the ethical issues of remote monitoring.

Patterns of multimorbidity and their association with health outcomes within Yorkshire, England: baseline results from the Yorkshire Health Study.

BACKGROUND: Multimorbidity is increasingly being recognized as a serious public health concern. Research into its determinants, prevalence, and management is needed and as the risk of experiencing multiple chronic conditions increases over time, attention should be given to investigating the development of multimorbidity through prospective cohort design studies. Here we examine the baseline patterns of multimorbidity and their association with health outcomes for residents in Yorkshire, England using data from the Yorkshire Health Study. METHODS: Baseline data from the Yorkshire Health Study (YHS) was collected from 27,806 patients recruited between 2010 and 2012. A two-stage sampling strategy was implemented which first involved recruiting 43 general practice surgeries and then having them consent to mailing invitations to their patients to complete postal or online questionnaires. The questionnaire collected information on chronic health conditions, demographics, health-related behaviours, healthcare and medication usage, and a range of other health related variables. Descriptive statistics (chi-square and t tests) were used to examine associations between these variables and multimorbidity. RESULTS: In the YHS cohort, 10,332 participants (37.2 %) reported having at least two or more long-term health conditions (multimorbidity). Older age, BMI and deprivation were all positively associated with multimorbidity. Nearly half (45.7 %) of participants from the most deprived areas experienced multimorbidity. Based on the weighted sample, average health-related quality of life decreased with the number of health conditions reported; the mean EQ-5D score for participants with no conditions was 0.945 compared to 0.355 for participants with five or more. The mean number of medications used for those without multimorbidity was 1.81 (range 1-13, SD = 1.25) compared to 3.81 (range 1-14, SD = 2.44) for those with at least two long-term conditions and 7.47 (range 1-37, SD = 7.47) for those with 5+ conditions. CONCLUSION: Patterns of multimorbidity within the Yorkshire Health Study support research on multimorbidity within previous observational cross-sectional studies. The YHS provides both a facility for participant recruitment to intervention trials, and a large population-based longitudinal cohort for observational research. It is planned to continue to record chronic conditions and other health related behaviours in future waves which will be useful for examining determinants and trends in chronic disease and multimorbidity.

The SMART personalised self-management system for congestive heart failure: results of a realist evaluation.

BACKGROUND: Technology has the potential to provide support for self-management to people with congestive heart failure (CHF). This paper describes the results of a realist evaluation of the SMART Personalised Self-Management System (PSMS) for CHF. METHODS: The PSMS was used, at home, by seven people with CHF. Data describing system usage and usability as well as questionnaire and interview data were evaluated in terms of the context, mechanism and outcome hypotheses (CMOs) integral to realist evaluation. RESULTS: The CHF PSMS improved heart failure related knowledge in those with low levels of knowledge at baseline, through providing information and quizzes. Furthermore, participants perceived the self-regulatory aspects of the CHF PSMS as being useful in encouraging daily walking. The CMOs were revised to describe the context of use, and how this influences both the mechanisms and the outcomes. CONCLUSIONS: Participants with CHF engaged with the PSMS despite some technological problems. Some positive effects on knowledge were observed as well as the potential to assist with changing physical activity behaviour. Knowledge of CHF and physical activity behaviour change are important self-management targets for CHF, and this study provides evidence to direct the further development of a technology to support these targets.

Nature-based social prescribing programmes: opportunities, challenges, and facilitators for implementation.

BACKGROUND: Evidence on the health benefits of spending time in nature has highlighted the importance of provision of blue and green spaces where people live. The potential for health benefits offered by nature exposure, however, extends beyond health promotion to health treatment. Social prescribing links people with health or social care needs to community-based, non-clinical health and social care interventions to improve health and wellbeing. Nature-based social prescribing (NBSP) is a variant that uses the health-promoting benefits of activities carried out in natural environments, such as gardening and walking. Much current NBSP practice has been developed in the UK, and there is increasing global interest in its implementation. This requires interventions to be adapted for different contexts, considering the needs of populations and the structure of healthcare systems. METHODS: This paper presents results from an expert group participatory workshop involving 29 practitioners, researchers, and policymakers from the UK and Germany's health and environmental sectors. Using the UK and Germany, two countries with different healthcare systems and in different developmental stages of NBSP practice, as case studies, we analysed opportunities, challenges, and facilitators for the development and implementation of NBSP. RESULTS: We identified five overarching themes for developing, implementing, and evaluating NBSP: Capacity Building; Accessibility and Acceptability; Networks and Collaborations; Standardised Implementation and Evaluation; and Sustainability. We also discuss key strengths, weaknesses, opportunities, and threats for each overarching theme to understand how they could be developed to support NBSP implementation. CONCLUSIONS: NBSP could offer significant public health benefits using available blue and green spaces. We offer guidance on how NBSP implementation, from wider policy support to the design and evaluation of individual programmes, could be adapted to different contexts. This research could help inform the development and evaluation of NBSP programmes to support planetary health from local and global scales.

Health-related outcomes in patients enrolled on surgical and non-surgical routes in a weight management service.

BACKGROUND AND AIMS: This study evaluates a specialist weight management service and compares outcomes in participants referred to the service undergoing either surgery or non-surgical routes to support weight loss. METHODS: Four hundred and forty eight participants were assessed on various weight-related outcomes (body mass index [BMI], psychological distress, quality of life, nutrition, weight-related symptoms, physical activity) on referral to the service and on discharge. The effect of group (surgery or non-surgery) and time in the service were facilitated by doubly multivariate analyses of variance models. RESULTS: Between referral and discharge, participants improved significantly on a combination of outcomes (P < .001) and on each outcome assessed individually. The magnitude of overall improvement was moderate (partial-η2 = 0.141). Individual improvement components varied; including a moderate reduction of 3.2% in the BMI outcome measure and a substantive gain of 64.6% in quality of life. Participants on non-surgical routes performed significantly better than participants on surgical routes on a linear combination of outcomes (P < .001) and on all outcomes except nutrition; with an effect of route small-to-moderate in magnitude (partial-η2 = 0.090). CONCLUSIONS: Weight management services are successful in achieving weight management-related outcomes in the short- and long-term, with large overall improvements between referral and discharge averaged over all participants observed. Non-surgical routes appear to confer benefits between referral and discharge compared to surgical routes.

Impact of social prescribing to address loneliness: A mixed methods evaluation of a national social prescribing programme.

Loneliness is considered a global public health issue because of its detrimental impact on physical and mental health but little is known about which interventions can reduce loneliness. One potential intervention is social prescribing, where a link worker helps service-users to access appropriate support such as community activities and social groups. Some qualitative studies have identified that social prescribing may help to reduce service-users' loneliness. Given this, the British Red Cross (a third sector organisation) developed and delivered a national social prescribing service in the United Kingdom to support people who were experiencing, or at risk of, loneliness. Service-users could receive up to 12 weeks of support from a link worker. A mixed methods study was conducted to understand the impact of the support on loneliness, and to identify the facilitators and barriers to service delivery. The study included: (a) analysis of quantitative data collected routinely between May 2017 and December 2019 (n = 10,643) including pre-post analysis of UCLA data (n = 2,250) and matched comparator work to measure changes in loneliness; (b) semi-structured interviews with service-users, link workers and volunteers (n = 60) and (c) a Social Return on Investment Analysis. The majority of the service-users (72.6%, n = 1634/2250) felt less lonely after receiving support. The mean change in UCLA score was -1.84 (95% CI -1.91 to -1.77) of a maximum change of 6.00 (decrease indicates an improvement). Additional benefits included improved wellbeing, increased confidence and life having more purpose. The base case analysis estimated a social return on investment of £3.42 per £1 invested in the service. Having skilled link workers and support tailored to individual needs appeared key. However, challenges included utilising volunteers, meeting some service-users' needs in relation to signposting and sustaining improvements in loneliness. Nonetheless, the service appeared successful in supporting service-users experiencing loneliness.

Connecting communities: A qualitative investigation of the challenges in delivering a national social prescribing service to reduce loneliness.

Loneliness is a global public health concern linked to a range of negative health outcomes (Cacioppo & Cacioppo, 2018. The Lancet. 391(10119), 426). Internationally, this has led to the development of a number of interventions, but these are rarely implemented or evaluated on a large scale. This paper is one of the first of its kind to describe elements of an evaluation of a large-scale national social prescribing scheme to reduce loneliness, deploying individual link workers to signpost people to community activities. Reporting on findings from interviews with staff (n = 25 of which 6 were repeat interviews) and volunteers (n = 9) between October 2017 and December 2018 in localities across the United Kingdom. We reflect on the complexities of the link worker role, the challenges of service delivery and the importance of community infrastructure. There was evidence that highly skilled link workers who had developed positive relationships with providers and service-users were key to the success of the intervention. As well as providing an effective liaison and signposting function, successful link workers tailored the national programme to local need to proactively address specific gaps in existing service provision. For social prescribing services to be successful and sustainable, commissioners must consider additional funding of community infrastructure.

A qualitative investigation of women's experiences of the self and others in relation to their menstrual cycle.

OBJECTIVES: This study aimed to compare and contrast detailed accounts of a community sample of women, with prospectively defined low or high premenstrual symptoms, highlighting differences/similarities. METHODS: Semi-structured interviews were conducted with 16 women (9 with 'low' and 7 with 'high' symptom levels) and analysed using template analysis. RESULTS: 'Low symptom' women perceived themselves as generally laid back but demonstrated a need for organization and control in the family environment. They accepted less than perfect relationships, compared themselves favourably to others and perceived themselves as having strong support networks. There was a negative perception of the introduction to menarche but this was coupled with strong maternal support. 'High symptom' women showed patterns of perfectionism, an emphasis on self-sacrifice and unfavourable comparison of self with others. They reported feeling alone, overwhelmed by tasks and experienced relationships as characterized by unresolved tensions. Menarche was viewed as a positive experience but accompanied by low maternal support. Both groups viewed their symptoms as irrational and controllable outside the home, but vented on partner, close family and children. There was acknowledgement of difference from 'normal' ('low') with an emphasis on the all-encompassing nature of symptoms ('high'). CONCLUSIONS: Women with high and low menstrual cycle symptoms viewed aspects of themselves and their relationships with others in both similar and different ways. A major issue for high symptom women was that they struggled to tolerate imperfections, both in their own performance or in their relationships with others, potentially emphasizing the role of cognitive appraisals in interventions.

Patient Perspectives in Geographic Atrophy (GA): Exploratory Qualitative Research to Understand the Impact of GA for Patients and Their Families.

BACKGROUND: Age-related macular degeneration (AMD) is the major cause of blindness for the older population in the developed world. Geographic atrophy (GA) is an advanced form of AMD. This progressive degenerative disease causes loss of visual function but unlike exudative AMD there are currently no approved therapeutic treatments for GA. Instead management of the condition is through supportive care. The aim of this study was to conduct exploratory qualitative research to develop a further understanding specifically of the impact of geographic atrophy (GA) on the quality of life for both patients and their families and to explore the resources GA patients most frequently access. METHODS: Two focus groups were conducted where participants were assigned to the 'better' or 'worse' group based upon their level of visual acuity. The data were analysed using the principles of thematic analysis. Transcripts were coded using an a priori framework. Emerging themes and subthemes were added, and transcripts recoded to reflect this. Transcripts were coded by one researcher, and the emerging themes and subthemes discussed and agreed prior to transcript recoding. RESULTS: Nine participants were recruited to the study (n = 5 'better group' and n = 4 'worse group'). Six overarching themes were identified. These are: experience of symptoms and understanding of GA; impact on activities; feelings and emotions; relationships and informal support; accessing formal support; and information needs. CONCLUSION: Key findings indicated that: participants had little knowledge of the mechanisms of GA but were aware of their prognosis; activities impacted by GA included management of daily activities and reading; emotions experienced included fear and frustration, and these frequently crossed over into their relationships with others; and access to formal support was mainly practical and information needs were largely unmet, with peer support being identified as important. Management of GA should include signposting to appropriate support agencies, such as low-vision services and charities.

Interpersonal touch interventions for patients in intensive care: A design-oriented realist review.

AIM: To develop a theoretical framework to inform the design of interpersonal touch interventions intended to reduce stress in adult intensive care unit patients. DESIGN: Realist review with an intervention design-oriented approach. METHODS: We searched CINAHL, MEDLINE, EMBASE, CENTRAL, Web of Science and grey literature sources without date restrictions. Subject experts suggested additional articles. Evidence synthesis drew on diverse sources of literature and was conducted iteratively with theory testing. We consulted stakeholders to focus the review. We performed systematic searches to corroborate our developing theoretical framework. RESULTS: We present a theoretical framework based around six intervention construction principles. Theory testing provided some evidence in favour of treatment repetition, dynamic over static touch and lightening sedation. A lack of empirical evidence was identified for construction principles relating to intensity and positive/negative evaluation of emotional experience, moderate pressure touch for sedated patients and intervention delivery by relatives versus healthcare practitioners.

Does the Design of Settings Where Acute Care Is Delivered Meet the Needs of Older People? Perspectives of Patients, Family Carers, and Staff.

BACKGROUND: Older people with an acute illness, many of whom are also frail, form a significant proportion of the acute hospital inpatient population. Attention is focusing on ways of improving the physical environment to optimize health outcomes and staff efficiency. PURPOSE: This article explores the effects of the physical environment in three acute care settings: acute hospital site, in-patient rehabilitation hospital, and intermediate care provision (a nursing home with some beds dedicated to intermediate care) chosen to represent different steps on the acute care pathway for older people and gain the perspectives of patients, family carers, and staff. METHODS: Semi structured interviews were undertaken with 40 patient/carer dyads (where available) and three staff focus groups were conducted in each care setting with a range of staff. RESULTS: Multiple aspects of the physical environment were reported as important by patients, family carers, and staff. For example, visitors stressed the importance of access and parking, patients valued environments where privacy and dignity were protected, storage space was poor across all sites, and security was important to patients but visitors want easy access to wards. CONCLUSIONS: The physical environment is a significant component of acute care for older people, many of whom are also frail, but often comes second to organization of care, or relationships between actors in an episode of care.

Is there evidence of an association between postnatal distress and premenstrual symptoms?

BACKGROUND: There is a widely held assumption in the literature that a well-established link exists between postnatal depressive and premenstrual symptoms. However, on examination of existing research, certain methodological limitations were identified including inadequate methods of assessment and a heavy reliance upon the retrospective assessment of either postnatal or premenstrual symptoms, giving rise to concern regarding the validity of any conclusions. METHODS: A community sample of 63 women completed a daily menstrual symptom diary for two consecutive months. Women's Edinburgh Postnatal Depression Scale score, recorded 1-3 years previously, was provided by their Health Visitor. RESULTS: Only one participant showed evidence of both postnatal and premenstrual distress when using an EPDS cut-off of >12 and defined criteria for premenstrual symptom assessment. When scores were treated as a continuum, there was no association between postnatal distress and psychological premenstrual symptoms and only a trend towards significance between postnatal distress and physical premenstrual symptoms. LIMITATIONS: Due to the recruitment method, there is some uncertainty regarding the overall response rate. Although this was not a large sample, it compares favourably with many other studies where daily data are collected. The particular focus was examining whether postnatal depressive symptoms predict premenstrual distress (not vice versa). CONCLUSIONS: This study found little evidence to support the widely held assumption of a clear relationship between postnatal distress and premenstrual symptoms.

Psychosocial associates of premenstrual symptoms and the moderating role of social support in a community sample.

OBJECTIVE: This study aimed to explore the role of psychological factors such as perfectionism, need for approval, timidity, and social support from key individuals such as a woman's mother and partner in relation to premenstrual symptoms in a community (non-help-seeking) sample. METHODS: A large sample of women completed a questionnaire to assess whether these proposed factors were associated. Premenstrual symptoms were assessed via daily ratings for a period of more than 2 months. RESULTS: Perfectionism and low levels of maternal support were associated with premenstrual symptoms. In addition, social support from both the mother and partner moderated the impact of perfectionism on physical symptoms. CONCLUSION: The quality of the relationship with one's mother and perceptions of support may play an important role in the experience of cyclical symptoms in 'normal' non-help-seeking women. This may interact with preexisting personality factors such as perfectionism. Such understandings may ultimately be of value in community-based preventative psychoeducational programs.