The Patient Journey

AbstractThe wide implementation of patient safety improvement efforts continues to face many barriers including insufficient involvement of all stakeholders in healthcare, lack of individual and organizational learning when medical errors occur and scarce investments in patient safety. The promotion of systems-based approaches offers methods and tools to improve the safety of care. A multidisciplinary perspective must include the involvement of patients and citizens as fundamental contributors to the design, implementation, and delivery of health services.The patient journey is a challenging example of using a systems approach. The inclusion of the patient's viewpoint and experience about their health journey throughout the time of care and across all the care settings represents a key factor in improving patient safety. Patient engagement ensures that the design of healthcare services are aligned with the values, the preferences, and needs of the patient community and integrates the real-life experience and the skills of the people to enhance patient safety in the patient journey.The utmost priority to implement patient engagement is the training of patients. Therefore, training for both patients/families/advocates and health professionals is the foundation on which to build active engagement of patients and consequently an effective and efficient patient journey.The chapter offers examples of successful training courses designed to foster strategic alliances among healthcare professionals and researchers with patients and their organizations. Training of patients constitutes the first step to develop shared knowledge, co-produced projects, and the achievement of active multilevel participation of patients for the implementation of patient safety in the patient journey

For Baby's Sake: Final Evaluation Report

For Baby’s Sake is an intervention for expectant parents who want to break the cycle of domestic abuse and support their baby’s early emotional and social development. Both parents join For Baby’s Sake, whether together as a couple or not, and may be supported until their baby is aged two. The programme takes a whole-family approach that deals with the entire cycle and history of domestic violence and abuse, identifying and directly addressing the trauma or traumas that lie at the heart of the problem. The Stefanou Foundation, a UK charity, designed and created For Baby’s Sake and commissioned King’s College London to conduct an independent evaluation of the programme’s operation during the prototype phase in two sites in Hertfordshire and London from 2015-2019. For Baby’s Sake is the culmination of over ten years of investment, effort and continuous learning and the Stefanou Foundation is proud to publish its independent evaluation by a team of researchers from King’s College London, University of Warwick, University of Central Lancashire, University of Cambridge and McMaster University, Canada. The full report is available to download at www.forbabyssake.org.uk The report is being launched in the context of COVID-19 and the creation of new domestic abuse legislation, so this joint summary by the Stefanou Foundation and the academic evaluation team provides some current context before outlining the key findings from the independent evaluation. COVID-19 shines a spotlight on the challenges for those experiencing domestic violence and abuse (DVA) to come forward for support, as well as the physical, emotional and psychological risks and impact of the abuse. The pandemic is also raising questions about how best to support mental health and emotional regulation, especially for those with underlying needs caused by previous trauma. The welcome passage of the domestic abuse legislation through Parliament is drawing attention to the nature of domestic abuse and how best to address it. There are more calls to assist those who perpetrate abuse in changing their behaviour. There is growing recognition of the evidence that children are directly affected by domestic abuse and should be recognised as victims and not simply witnesses. For Baby’s Sake makes a distinctive contribution on all of these points. It creates a different opportunity for families to seek and receive support, through allocating practitioners to work individually and separately with both parents. It takes a trauma-informed approach to address the mental health needs of parents and babies. It underlines that the call to recognise and support child victims of domestic abuse must include babies, who are particularly affected from pregnancy until the age of two. This is because of how domestic abuse can affect the development of babies’ brains, bodies and relationships with their parents over that timescale. The academic evaluation report includes evidence from practitioners, stakeholders and a sample of parents who agreed to be interviewed up to three times during the course of the evaluation (2015 – 2019) and provides extensive data including validated research assessments. The four-year evaluation aimed to assess the feasibility, acceptability and impact of For Baby’s Sake as well as provide lessons for future research. Having stated the extent and profound risks and impact of the experience of DVA for parents and children during the perinatal period (conception to age two) and beyond, and having conducted a systematic evidence review, the report recognises that For Baby’s Sake is the first programme to address key limitations of existing interventions. The programme is at the vanguard of the move towards whole-family, trauma-informed approaches. For Baby’s Sake takes a unique approach, with practitioners working individually and separately with both parents, from pregnancy, combining evidence-based elements to break cycles of DVA, address the impact of parents’ own childhood trauma and improve adult mental health, alongside parenting interventions focused on infant mental health and parent-infant attachment. Results of the evaluation show the successful embedding of For Baby’s Sake in its first two diverse prototype sites (Stevenage, North Herts and Welwyn Hatfield districts of Hertfordshire and London Three Boroughs - Westminster, Kensington & Chelsea and Hammersmith & Fulham). Across both sites, the programme received referrals, particularly from children’s social care, and attracted both co-parents to engage, demonstrating the feasibility of this novel aspect of the model, and sustained this engagement, with only 18% and 11% of all those referred disengaging following sign-up in Hertfordshire and London Three Boroughs respectively. Those engaged in For Baby’s Sake, and recruited to the evaluation, had complex interpersonal abuse histories. There were challenges for service users in reporting on their experience and perpetration of domestic abuse, which included reports of bi-directional abuse in some relationships. The evaluation found that at their first, baseline interview, many service users did not acknowledge experiencing DVA or using DVA behaviours within the previous year, though they were much more likely to disclose that there had been domestic abuse at some time in the relationship. Almost all mothers also reported that they had experienced abuse at some stage from someone other than their co-parent. At the second interview, they were more likely to disclose experiencing abuse or using abusive behaviours. Evidence suggests that the initial low reports of abuse may be due to minimisation, to not recognising certain behaviours as abusive or to reluctance to disclose due to fear or shame. Qualitative data indicate how the therapeutic work could have affected disclosure of abuse, by enabling mothers to understand domestic abuse more clearly and link that knowledge to their experience. Service user interviews pointed to their multiple, complex needs, indicating the success of For Baby’s Sake in reaching its target population. A substantial proportion of men and women had symptoms of depression, anxiety and post-traumatic stress disorder (PTSD), as well as high numbers of disordered personality traits. As expected, the majority of parents reported adverse childhood experiences (ACEs), with many experiencing various forms of abuse and trauma and over half reporting that they experienced DVA as children. These childhood experiences link directly to one of the key reasons for expectant co-parents to engage in For Baby’s Sake. Many of the mothers and fathers explained how their motivation for change stemmed from their desire to provide a better life for their children and to be different kinds of parents in order to prevent their children having the same upbringing as they did. Similarly, practitioners reflected that the central emphasis on the baby is crucial in engaging service users and in facilitating healthy parenting behaviours, leading to secure attachments. The voluntary nature of For Baby’s Sake, and the contrast with service users’ previous experience of interventions, also acted as a motivating factor. Parents felt that the voluntary approach meant they did not feel coerced into participating and found interactions with the For Baby’s Sake teams to be non- judgemental, inviting and welcoming. Mothers and fathers engaging in For Baby’s Sake were positive about the programme, with many describing how ithad exceeded their expectations. They were able to identify the impacts for them, their relationships and their children, and to explore their successes, including gaining confidence and recognising and challenging abusive behaviours. These learnings were perceived to resonate particularly among some women from minority ethnic backgrounds who described how certain cultural expectations could create barriers to recognising domestic abuse and to speaking out against certain behaviours. The evaluation finds merit in the For Baby’s Sake approach ofsupporting parents whether together as a couple or not and making it clear that the programme has no goal in principle about parents staying together or separating. Each service user is supported and empowered to recognise and acton their own goals in this respect. The evaluation noted how these goals changed for some service users who expected to stay in the relationship but found personal growth instead. Over two thirds of women and all of the men interviewed for the evaluation were in a relationship with their co-parentatbaseline interviews. This reduced across time, with only a third of both men and women remaining in this relationship at the two-year follow-up. The researchers suggested that changes in the intimate relationship status with the co-parent can represent a useful assessment of the outcome of the programme. Mothers and fathers described how For Baby’s Sake had facilitated step- changes in their relationships with their babies and in their understanding of what parenting input babies need to develop. For the babies, birth and child developmentoutcomesatoneandtwoyears(includingbabies’ social, emotional and behavioural development) were largely in the normal range and only a third of families had any social care input at the two-year stage. This contrasted with 70% at baseline, of which 56% were either under a Child Protection Plan or Child in Need processes. Throughout the evaluation report, consistent messages about the mechanisms for change enabled by For Baby’s Sake were reflected by service users and practitioners alike. Parents talked about the value of the whole-family therapeutic approach, which provides support for the needs of the individual, within intimate and/or co-parenting relationships, and for the needs of the children. Parents are provided with tools and strategies to manage and improve their situations and feelings, including learning about visualisation and mindfulness, practising time-outs and using an anger scale. Many fathers, in particular, reflected on how the therapeutic model allowed them space to acknowledge their own emotions and to use tools and develop methods to instil healthy coping mechanisms. Another key mechanism for change was identified as the ability to develop a close therapeutic relationship with a highly skilled practitioner over a long period of time. Practitioners reflected that they were able to focus in a detailed way on a specific member of the family, while working with their colleagues to develop a holistic picture of the issues for all members of the family and understand much better any risks and safeguarding issues. Many parents specifically identified the Inner Child module, the therapeutic core of For Baby’s Sake, as particularly beneficial, building trust and working therapeutically with practitioners to examine their childhoods through a trauma-informed lens. For mothers, the Inner Child module was reported as giving them time and space to explore different aspects of their lives, process their childhood experiences and their experience of DVA as adults and build self-esteem and a sense of empowerment. For fathers, benefits were described in helping them to understand that what happened to them as a child was not their fault but that they were responsible for the behaviours and actions they engaged in as adults. This led to greater awareness among some fathers of the impact of their behaviour, a willingness to take responsibility for their actions, the commitment to no longer use violence and abuse and the desire to put the needs of their co-parents and children first. This shift ‘from being me-centred to child-centred’ describes practitioners’ and service users’ views thatplacing the baby atthe centre ofthe work and adopting a whole-family and co-parenting approach provide the best opportunity to affect change in parents’ lives and improve children’s outcomes and safety. Many families spoke of the value in receiving psychoeducation on how DVA impacts on children and in receiving general parenting support. Parents identified their learning about child brain development and how attachments form as contributing to them becoming more confident in their parenting and improving communication in their family. Building on this, mothers and fathers who took part in Video Interaction Guidance (VIG) within the programme perceived it had helped them to focus on attachment and sensitive, attuned parenting, allowing them to see the bonds they had developed with their child and providing reassurance about their parenting abilities. The researchers interviewed multi-agency professionals in Hertfordshire and London who reported on their views of For Baby’s Sake and their experience of working with the teams. They valued the holistic, whole family approach, endorsed the programme for being evidence-based and reported that the For Baby’s Sake teams were highly trained, skilled and responsive. Stakeholders described effective joint working practices and communication, with children’s social care and health in particular, citing how this would result in collaborative working around the safeguarding of children and families. The evaluation also described how dialogue between For Baby’s Sake and local stakeholders helped to build and strengthen understanding of the programme and encouraged this dialogue to continue at local and national levels. The evaluation report also provides valuable learning about the research process itself, concluding that it is feasible and acceptable to collect quantitative and qualitative data through a range of self-report, observational, staff and researcher-administered measures. These data can be collected from all family members among this cohort of families with multiple complex needs and intergenerational trauma histories, although data collection, from fathers in particular, across multiple time points can be challenging. Realist research methodologies that use qualitative and quantitative techniques to examine what works best for whom, when and in what context, are suggested for use in future evaluation, to suit the holistic and continuously developing nature of For Baby’s Sake. Undertaking longer-term follow-up of those engaged in prototype For Baby’s Sake sites and the introduction of a comparator group who receive standard support are encouraged for consideration in any future evaluation of the effectiveness of For Baby’s Sake. The evaluation team suggests further research is required with a larger sample in order to undertake a full economic evaluation of the programme. Finally, the report includes many insights and ideas to consider as the Stefanou Foundation and its partners continue to develop and roll-out For Baby’s Sake beyond its (now four) delivery sites. These include: • Development of an assessment of fidelity using key principles of For Baby’s Sake rather than adherence to specific elements of the programme manual, to reflect the flexibility now embedded within the programme that enables the match with service users’ needs and circumstances • Drawing on feedback about language and messaging to ensure the programme’s approach is well understood. For example, guarding against ‘victim’ and ‘perpetrator’ terminology which fathers found to be blaming, providing assurance to mothers about the programme’s approach to supporting one parent when the other parent disengages, and clarifying to stakeholders that the programme is not prescriptive about models of co- parenting • Developing a new outcome assessment to measure changes to the relationship status of co-parents throughout the programme, alongside indicators regarding not only practitioners’ assessment of risk but also parents’ perceptions of safety and risk of harm, both for themselves and for their children, to indicate the success of the programme • Providing training to local authorities and sharing learning from For Baby’s Sake more widely, including on adopting trauma-informed approaches to all of the factors (individual, family/personal relationships, communities and societal) that can contribute to domestic abuse and make it challenging to break the cycle • Finding new ways to examine the full range of outcomes achieved by families, reflecting the difficulty of applying quantitative measures to assess outcomes for families and longer-term outcomes for children. This would build on the Foundation’s move to incorporate more qualitative approaches that describe families’ journeys through For Baby’s Sake as a way to ‘show the true impact’ in addition to quantitative measures The evaluation has confirmed that For Baby’s Sake is the first programme to fill an important gap in provision through its unique approach. This early research evaluation into the prototype phase found that the majority of individuals who engaged in the evaluation and remained in the programme over time reported a positive experience, were able to identify specific ways that they had changed their behaviour and related these to aspects of the programme. These findings, alongside the recognition by the evaluation team of the importance of the innovation and the careful, evidence-based approach of the Foundation in creating and operating the programme, support the creation of two new sites in Cambridgeshire and Blackpool in 2019 and early 2020 respectively, and will contribute to the case for further expansion of For Baby’s Sake. The Stefanou Foundation is keen to work with partners to achieve this expansion, to reach more families, break the cycle of domestic abuse and give babies the best start in life

'I'm sure we made it a better study…': Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study.

Patient and public involvement is considered integral to health research in the United Kingdom; however, studies documenting the involvement of adults with intellectual disabilities and parent carers in health research studies are scarce. Through group interviews, this study explored the perspectives and experiences of a group of adults with intellectual disabilities and a group of parent carers about their collaborative/participatory involvement in a 3-year study which explored the effectiveness of annual health checks for adults with intellectual disabilities. Thematic analysis identified five key themes consistent across both groups; authenticity of participation, working together, generating new outcome measures, dissemination of findings and involvement in future research. Although reported anecdotally rather than originating from the analysis, increased self-confidence is also discussed. The groups' unique perspectives led to insights not previously considered by the research team which led to important recommendations to inform healthcare practice

Patient and public involvement in patient safety research: a workshop to review patient information, minimise psychological risk and inform research

Background Patient safety has attracted increasing attention in recent years. This paper explores patients’ contributions to informing patient safety research at an early stage, within a project on intravenous infusion errors. Currently, there is little or no guidance on how best to involve patients and the wider public in shaping patient safety research, and indeed, whether such efforts are worthwhile. Method We ran a 3-hour workshop involving nine patients with experience of intravenous therapy in the hospital setting. The first part explored patients’ experiences of intravenous therapy. We derived research questions from the resulting discussion through qualitative analysis. In the second part, patients were asked for feedback on patient information sheets considering both content and clarity, and on two potential approaches to framing our patient information: one that focused on research on safety and error, the other on quality improvement. Results The workshop led to a thorough review of how we should engage with patients. Importantly, there was a clear steer away from terms such as ‘error’ and ‘safety’ that could worry patients. The experiences that patients revealed were also richer than we had anticipated, revealing different conceptions of how patients related to their treatment and care, their role in safety and use of medical devices, the different levels of information they preferred, and broader factors impacting perceptions of their care. Conclusion Involving patients at an early stage in patient safety research can be of great value. Our workshop highlighted sensitivities around potentially worrying patients about risks that they might not have considered previously, and how to address these. Patient representatives also emphasised a need to expand the focus of patient safety research beyond clinicians and error, to include factors affecting perceptions of quality and safety for patients more broadly

Not all mitochondrial carrier proteins support permeability transition pore formation: no involvement of uncoupling protein 1

The mPTP (mitochondrial permeability transition pore) is a non-specific channel that is formed in the mitochondrial inner membrane in response to several stimuli, including elevated levels of matrix calcium. The pore is proposed to be composed of the ANT (adenine nucleotide translocase), voltage-dependent anion channel and cyclophilin D. Knockout studies, however, have demonstrated that ANT is not essential for permeability transition, which has led to the proposal that other members of the mitochondrial carrier protein family may be able to play a similar function to ANT in pore formation. To investigate this possibility, we have studied the permeability transition properties of BAT (brown adipose tissue) mitochondria in which levels of the mitochondrial carrier protein, UCP1 (uncoupling protein 1), can exceed those of ANT. Using an improved spectroscopic assay, we have quantified mPTP formation in de-energized mitochondria from wild-type and Ucp1KO (Ucp1-knockout) mice and assessed the dependence of pore formation on UCP1. When correctly normalized for differences in mitochondrial morphology, we find that calcium-induced mPTP activity is the same in both types of mitochondria, with similar sensitivity to GDP (approximately 50% inhibited), although the portion sensitive to cyclosporin A is higher in mitochondria lacking UCP1 (approximately 80% inhibited, compared with approximately 60% in mitochondria containing UCP1). We conclude that UCP1 is not a component of the cyclosporin A-sensitive mPTP in BAT and that playing a role in mPTP formation is not a general characteristic of the mitochondrial carrier protein family but is, more likely, restricted to specific members including ANT

Patient and public involvement in health literacy interventions: a mapping review

Background: Health literacy is a critical mediating factor that impacts on the health of older adults. Patient and public involvement in health and social care research, policy and design of care delivery is one mechanism that can promote production of better health literacy. This mapping review looks for and describes practices, concepts and methods that have been reported involving patients, public and (non-researcher) professionals in the development and design of health literacy interventions for older people. Methods: Studies that aimed to improve health literacy were identified within a previously created compatible inventory of health behaviour studies for older people. Articles were screened for whether they addressed health literacy and featured involvement of stakeholders other than investigators and patients. Two reviewers independently read each study to identify any patient, public and professional involvement in the research process. We also noted some aspects of outcomes. Results: Twenty-two studies included patient, public and/or professional involvement in at least one research domain: design, management or evaluation. Involvement included volunteers, older people, professionals, patients, and community representatives. All studies were driven by an organisational or biomedical agenda. Conclusions: Patient, public and professional involvement wasrarely reported in studies on health literacy interventions for older people. This could help explain why some interventions fail to improve health literacy in older people. Key words – health literacy intervention research, older people, patient and public involvement, mapping revie

Patient and public involvement in designing and conducting doctoral research: the whys and the hows

YesPublic and patient involvement (PPI) has been shown to have a positive impact on health and social care research. However, adequate examples describing how to operationalise effective PPI, especially in doctoral studies, are lacking. Hence, doctoral researchers new to research, or those with limited experience, can be discouraged from facilitating PPI in their research. This paper aims to describe and discuss in detail the approaches used by four doctoral researchers to incorporate PPI at different stages of their research studies from study design to disseminating findings. We aim to inform other doctoral researchers about the challenges and limitations relating to PPI that we faced. Through these, we share pragmatic recommendations for facilitating PPI during doctoral studies. The description of four case studies demonstrated that PPI could be incorporated at various stages during doctoral research. This has had a beneficial impact on our research study progression, researcher self-esteem and lastly, helped alleviate researcher isolation during doctoral studies.Supported by Research Design Service Yorkshire and the Humber (RDSYH), the National Institute for Health Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre (NIHR Yorkshire and Humber PSTRC). This paper presents independent research funded by NIHR under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0317-20010).Research Development Fund Publication Prize Award winner, July 2019

Who wants to be involved in health care decisions? Comparing preferences for individual and collective involvement in England and Sweden

Background: Patient and public involvement (PPI) is framed as positive for individuals, the health system, public health, as well as for communities and society as a whole. We investigated whether preferences for PPI differed between two countries with Beveridge type health systems-Sweden and England. We measured willingness to be involved in individual treatment decisions and in decisions about the organization and provision of local health and social care services. Methods: This was a comparative cross-sectional study of the general population's preferences. Together, the two samples included 3125 respondents; 1625 in England and 1500 in Sweden. Country differences were analysed in a multinomial regression model controlling for gender, age and educational attainment. Results: Overall, 68% of respondents wanted a passive patient role and 44% wanted to be involved in local decisions about organization and provision of services. In comparison with in Sweden, they were in England less likely to want a health professional such as a GP or consultant to make decisions about their treatment and also more likely to want to make their own decisions. They were also less likely to want to be involved in local service development decisions. An increased likelihood of wanting to be involved in organizational decision-making was associated with individuals wanting to make their own treatment decisions. Women were less likely to want health professionals to make decisions and more likely to want to be involved in organizational decisions. Conclusions: An effective health system that ensures public health must integrate an effective approach to PPI both in individual treatment decisions and shaping local health and social care priorities. To be effective, involvement activities must take in to account the variation in the desire for involvement and the implications that this has for equity. More work is needed to understand the relationship between the desire to be involved and actually being involved, but both appear related to judgements of the impact of involvement on health care decisions

Surveillance Technology in Dementia Care: Implicit Assumptions and Unresolved Tensions

This paper examines the concept of “Surveillance Technology [ST]” as it is used in ageing and dementia research but which suffers from poor definition. We attempt to clarify this imprecision by contextualizing a brief history of the development of ST and provide a summary of the research in this area. We contrast this with the responses provided by a public and patient involvement group of people living with a dementia diagnosis, or experience of supporting people with dementia. ST operates in multiple interacting ways, all of which need to be taken into account in research, public and policy debate. As a technology it is often seen as a way of assisting individuals and therefore classified as an Assistive Technology [AT]. However, the meaning of ST used in dementia care has pragmatic implications beyond the meeting of the needs for “safety and independence”; ideas which is often used to justify its use. We argue that there is need to interrogate the terms “Surveillance” and “Technology” more carefully if ST is to be considered as empowering for people with dementia. This tension is brought out in the accounts present in a group discussion on ST and its use. This paper argues that there needs to be an acknowledgement that the purposes of such technologies need to be regularly reviewed in order for society to keep up with the rapidly changing pace of technology and the changing needs of users