Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)

Background Dementia has an enormous impact on the lives of individuals and families, and on health and social services, and this will increase as the population ages. The needs of people with dementia and their carers for information and support are inadequately addressed at all key points in the illness trajectory. Methods The Unit is working specifically on an evaluation of the impact of the Mental Capacity Act 2005, and will develop practice guidance to enhance concordance with the Act. Phase One of the study has involved baseline interviews with practitioners across a wide range of services to establish knowledge and expectations of the Act, and to consider change processes when new policy and legislation are implemented. Findings Phase 1, involving baseline interviews with 115 practitioners, identified variable knowledge and understanding about the principles of the Act. Phase 2 is exploring everyday decision-making by people with memory problems and their carers

Functionality and feedback: a realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care

Background: The feedback of patient-reported outcome measures (PROMs) data is intended to support the care of individual patients and to act as a quality improvement (QI) strategy. Objectives: To (1) identify the ideas and assumptions underlying how individual and aggregated PROMs data are intended to improve patient care, and (2) review the evidence to examine the circumstances in which and processes through which PROMs feedback improves patient care. Design: Two separate but related realist syntheses: (1) feedback of aggregate PROMs and performance data to improve patient care, and (2) feedback of individual PROMs data to improve patient care. Interventions: Aggregate – feedback and public reporting of PROMs, patient experience data and performance data to hospital providers and primary care organisations. Individual – feedback of PROMs in oncology, palliative care and the care of people with mental health problems in primary and secondary care settings. Main outcome measures: Aggregate – providers’ responses, attitudes and experiences of using PROMs and performance data to improve patient care. Individual – providers’ and patients’ experiences of using PROMs data to raise issues with clinicians, change clinicians’ communication practices, change patient management and improve patient well-being. Data sources: Searches of electronic databases and forwards and backwards citation tracking. Review methods: Realist synthesis to identify, test and refine programme theories about when, how and why PROMs feedback leads to improvements in patient care. Results: Providers were more likely to take steps to improve patient care in response to the feedback and public reporting of aggregate PROMs and performance data if they perceived that these data were credible, were aimed at improving patient care, and were timely and provided a clear indication of the source of the problem. However, implementing substantial and sustainable improvement to patient care required system-wide approaches. In the care of individual patients, PROMs function more as a tool to support patients in raising issues with clinicians than they do in substantially changing clinicians’ communication practices with patients. Patients valued both standardised and individualised PROMs as a tool to raise issues, but thought is required as to which patients may benefit and which may not. In settings such as palliative care and psychotherapy, clinicians viewed individualised PROMs as useful to build rapport and support the therapeutic process. PROMs feedback did not substantially shift clinicians’ communication practices or focus discussion on psychosocial issues; this required a shift in clinicians’ perceptions of their remit. Strengths and limitations: There was a paucity of research examining the feedback of aggregate PROMs data to providers, and we drew on evidence from interventions with similar programme theories (other forms of performance data) to test our theories. Conclusions: PROMs data act as ‘tin openers’ rather than ‘dials’. Providers need more support and guidance on how to collect their own internal data, how to rule out alternative explanations for their outlier status and how to explore the possible causes of their outlier status. There is also tension between PROMs as a QI strategy versus their use in the care of individual patients; PROMs that clinicians find useful in assessing patients, such as individualised measures, are not useful as indicators of service quality. Future work: Future research should (1) explore how differently performing providers have responded to aggregate PROMs feedback, and how organisations have collected PROMs data both for individual patient care and to improve service quality; and (2) explore whether or not and how incorporating PROMs into patients’ electronic records allows multiple different clinicians to receive PROMs feedback, discuss it with patients and act on the data to improve patient care

Transformative effects of social media:How patients’ use of social media affects roles and relationships in healthcare

Social media have started changing the way that many industries work. However, there is a lack of understanding of these changes, particularly in the context of healthcare, which is known for high information asymmetry between healthcare providers and patients, and authoritative relationships. Yet, the high proliferation of social media in healthcare enables patients to easily communicate with one another, exchanging informational and emotional support. However, it remains unclear how social media is used by patients, how it affects their behavior, their identities and their relationships with healthcare providers. We conduct a literature review and four empirical studies. First, we conduct a systematic literature review on patients’ use of social media and effects of such use. Second, we explore patients’ use of various categories of social media and propose a taxonomy of interactions enabled by social media in healthcare. Third, we explore how the use of social media by two chronic disease patient communities changes their behaviors and identities as well as their relationships with their healthcare providers. Fourth, we explore how healthcare providers’ interactions with patients who use social media change those providers’ occupational identity. Finally, we test to what extent, and through which mechanism, patients’ use of social media changes their relationships with healthcare providers. Taken together, these findings provide a new explanation of the developing role of social media in changing - and strengthening - organization-customer relationships

Automated analysis of free-text comments and dashboard representations in patient experience surveys: a multimethod co-design study

BACKGROUND: Patient experience surveys (PESs) often include informative free-text comments, but with no way of systematically, efficiently and usefully analysing and reporting these. The National Cancer Patient Experience Survey (CPES), used to model the approach reported here, generates > 70,000 free-text comments annually. MAIN AIM: To improve the use and usefulness of PES free-text comments in driving health service changes that improve the patient experience. SECONDARY AIMS: (1) To structure CPES free-text comments using rule-based information retrieval (IR) (‘text engineering’), drawing on health-care domain-specific gazetteers of terms, with in-built transferability to other surveys and conditions; (2) to display the results usefully for health-care professionals, in a digital toolkit dashboard display that drills down to the original free text; (3) to explore the usefulness of interdisciplinary mixed stakeholder co-design and consensus-forming approaches in technology development, ensuring that outputs have meaning for all; and (4) to explore the usefulness of Normalisation Process Theory (NPT) in structuring outputs for implementation and sustainability. DESIGN: A scoping review, rapid review and surveys with stakeholders in health care (patients, carers, health-care providers, commissioners, policy-makers and charities) explored clinical dashboard design/patient experience themes. The findings informed the rules for the draft rule-based IR [developed using half of the 2013 Wales CPES (WCPES) data set] and prototype toolkit dashboards summarising PES data. These were refined following mixed stakeholder, concept-mapping workshops and interviews, which were structured to enable consensus-forming ‘co-design’ work. IR validation used the second half of the WCPES, with comparison against its manual analysis; transferability was tested using further health-care data sets. A discrete choice experiment (DCE) explored which toolkit features were preferred by health-care professionals, with a simple cost–benefit analysis. Structured walk-throughs with NHS managers in Wessex, London and Leeds explored usability and general implementation into practice. KEY OUTCOMES: A taxonomy of ranked PES themes, a checklist of key features recommended for digital clinical toolkits, rule-based IR validation and transferability scores, usability, and goal-oriented, cost–benefit and marketability results. The secondary outputs were a survey, scoping and rapid review findings, and concordance and discordance between stakeholders and methods. RESULTS: (1) The surveys, rapid review and workshops showed that stakeholders differed in their understandings of the patient experience and priorities for change, but that they reached consensus on a shortlist of 19 themes; six were considered to be core; (2) the scoping review and one survey explored the clinical toolkit design, emphasising that such toolkits should be quick and easy to use, and embedded in workflows; the workshop discussions, the DCE and the walk-throughs confirmed this and foregrounded other features to form the toolkit design checklist; and (3) the rule-based IR, developed using noun and verb phrases and lookup gazetteers, was 86% accurate on the WCPES, but needs modification to improve this and to be accurate with other data sets. The DCE and the walk-through suggest that the toolkit would be well accepted, with a favourable cost–benefit ratio, if implemented into practice with appropriate infrastructure support. LIMITATIONS: Small participant numbers and sampling bias across component studies. The scoping review studies mostly used top-down approaches and focused on professional dashboards. The rapid review of themes had limited scope, with no second reviewer. The IR needs further refinement, especially for transferability. New governance restrictions further limit immediate use. CONCLUSIONS: Using a multidisciplinary, mixed stakeholder, use of co-design, proof of concept was shown for an automated display of patient experience free-text comments in a way that could drive health-care improvements in real time. The approach is easily modified for transferable application. FUTURE WORK: Further exploration is needed of implementation into practice, transferable uses and technology development co-design approaches. FUNDING: The National Institute for Health Research Health Services and Delivery Research programme

Transformative effects of social media:How patients’ use of social media affects roles and relationships in healthcare

Social media have started changing the way that many industries work. However, there is a lack of understanding of these changes, particularly in the context of healthcare, which is known for high information asymmetry between healthcare providers and patients, and authoritative relationships. Yet, the high proliferation of social media in healthcare enables patients to easily communicate with one another, exchanging informational and emotional support. However, it remains unclear how social media is used by patients, how it affects their behavior, their identities and their relationships with healthcare providers. We conduct a literature review and four empirical studies. First, we conduct a systematic literature review on patients’ use of social media and effects of such use. Second, we explore patients’ use of various categories of social media and propose a taxonomy of interactions enabled by social media in healthcare. Third, we explore how the use of social media by two chronic disease patient communities changes their behaviors and identities as well as their relationships with their healthcare providers. Fourth, we explore how healthcare providers’ interactions with patients who use social media change those providers’ occupational identity. Finally, we test to what extent, and through which mechanism, patients’ use of social media changes their relationships with healthcare providers. Taken together, these findings provide a new explanation of the developing role of social media in changing - and strengthening - organization-customer relationships

Specialist nursing support for unpaid carers of people with dementia : a mixed-methods feasibility study

Abstract Background Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources Dementia UK’s AN administrative data set. Results Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding The National Institute for Health Research Health Services and Delivery Research programme

Identifying Physicians’ User Experience (UX) Pain Points in Using Electronic Health Record (EHR) Systems

Healthcare institutions have migrated to online electronic documentation through the means of Electronic Health Record (EHR) systems. Physicians rely on these systems to support their various clinical work processes, such as entering clinical orders, reviewing essential clinical data, and making important medical decisions using reporting analytics. Although EHR systems appear to be useful and have known advantages over paper records, studies suggest there are persistent user interface design problems that may hinder physician productivity. The study focused on the research problem that EHR system designs create productivity problems for physician users who frequently report that system workflows are inefficient and do not map to their clinical process needs. Although researchers have examined EHR system adaptation and user interface design with various stakeholders, research is limited on the lived experiences of physicians who use the system. A few studies have focused on quantifying the factors that describe the phenomena of “meaningful use” of EHR systems. A qualitative approach to studying the phenomenon of physicians\u27 use of EHR systems is understudied and is relevant to investigate given EHR systems have become commonplace tools in clinical settings. An interpretive phenomenological analysis (IPA) study was conducted with the goal to discover what emergency room physicians describe as the pain points of their user experiences with EHR systems, which may include many different experiences to be uncovered, and their perspectives about how they manage the difficulty of system tasks and demands. Eight participants who represented a purposeful sample were recruited from one hospital in the Southeast region of the United States and participated in semi-structured interviews with open-ended questions. The data derived from the personal lived experiences of the participants were reviewed and analyzed through a step-by-step analytical process to develop five super-ordinate themes: Historical Chart Review, Inadequate Note Documentation, Difficult Order Entry, Patient Throughput Barriers, and Poor System Performance. The findings reveal consistencies with previous research that suggests physicians experience mental burden and burnout using EHR systems due to task complexity, task demand, and inefficiencies of system design. The findings have multiple implications for information technology (IT) system designers, healthcare administrators, and physician end users. This study provides future research opportunities to investigate the experiences of individuals who work in a different specialized area of the hospital, such as the intensive care unit (ICU)

Quantifying Quality of Life

Describes technological methods and tools for objective and quantitative assessment of QoL Appraises technology-enabled methods for incorporating QoL measurements in medicine Highlights the success factors for adoption and scaling of technology-enabled methods This open access book presents the rise of technology-enabled methods and tools for objective, quantitative assessment of Quality of Life (QoL), while following the WHOQOL model. It is an in-depth resource describing and examining state-of-the-art, minimally obtrusive, ubiquitous technologies. Highlighting the required factors for adoption and scaling of technology-enabled methods and tools for QoL assessment, it also describes how these technologies can be leveraged for behavior change, disease prevention, health management and long-term QoL enhancement in populations at large. Quantifying Quality of Life: Incorporating Daily Life into Medicine fills a gap in the field of QoL by providing assessment methods, techniques and tools. These assessments differ from the current methods that are now mostly infrequent, subjective, qualitative, memory-based, context-poor and sparse. Therefore, it is an ideal resource for physicians, physicians in training, software and hardware developers, computer scientists, data scientists, behavioural scientists, entrepreneurs, healthcare leaders and administrators who are seeking an up-to-date resource on this subject

Education to Employment: Designing a System that Works

Considering the education-to-employment system as a highway with three critical intersections -- enrolling in postsecondary education, building skills, and finding a job -- this research has determined places where students take wrong turns or fall behind, and why. With increased data and innovative approaches, employers, educators, governments and youth can create a better system