The potential and paradoxes of eHealth research for digitally marginalised groups: A qualitative meta-review.

Whilst the transformation towards digital healthcare is accelerating, there is still a substantial risk of excluding people with a distance to the online world. Groups like people with a low socioeconomic position, people with a migrant background or the elderly, who are already most at risk of experiencing health inequalities, are simultaneously experiencing increased digital exclusion. Researchers play a role in determining how eHealth access is framed and can thus impact how the barriers to its use are addressed. This qualitative meta-review critically evaluates the way researchers (as authors) discuss eHealth use in digitally marginalised groups. Specifically, it seeks to understand how eHealth is framed to address existing health systems problems; how the barriers to eHealth use are presented and which solutions are provided in response; and who authors suggest should be responsible for making eHealth work. The results of this review found four paradoxes in how current literature views eHealth use. Firstly, that health systems problems are complex and nuanced, yet eHealth is seen as a simple answer. Secondly, that there are many political, social and health systems-based solutions suggested to address eHealth use, however most of the identified barriers are individually framed. This focus on personal deficits results in misallocating responsibility for making these systemic improvements. Thirdly, although eHealth is meant to simplify the tasks of patients and healthcare workers, these are the groups most often burdened with the responsibility of ensuring its success. Lastly, despite tailoring eHealth to the user being the most suggested solution, researchers generally speak about groups as a homogenous entity - thus rendering tailoring difficult. Ultimately, this review finds that a shift to focus research on addressing systemic issues on a systems level is necessary to prevent further exacerbating existing health inequalities.

Doctors as Resource Stewards? Translating High-Value, Cost-Conscious Care to the Consulting Room.

After many policy attempts to tackle the persistent rise in the costs of health care, physicians are increasingly seen as potentially effective resource stewards. Frameworks including the quadruple aim, value-based health care and choosing wisely underline the importance of positive engagement of the health care workforce in reinventing the system-paving the way to real affordability by defining the right care. Current programmes focus on educating future doctors to provide 'high-value, cost-conscious care' (HVCCC), which proponents believe is the future of sustainable medical practice. Such programmes, which aim to extend population-level allocation concerns to interactions between an individual doctor and patient, have generated lively debates about the ethics of expanding doctors' professional accountability. To empirically ground this discussion, we conducted a qualitative interview study to examine what happens when resource stewardship responsibilities are extended to the consulting room. Attempts to deliver HVCCC were found to involve inevitable trade-offs between benefits to the individual patient and (social) costs, medical uncertainty and efficiency, and between resource stewardship and trust. Physicians reconcile this by justifying good-value care in terms of what is in the best interest of individual patients-redefining the currency of value from monetary costs to a patient's quality of life, and cost-conscious care as reflective medical practice. Micro-level resource stewardship thus becomes a matter of working reflexively and reducing wasteful forms of care, rather than of making difficult choices about resource allocation.

Monitoring and Evaluation of Patient Engagement in Health Product Research and Development: Co-Creating a Framework for Community Advisory Boards.

PURPOSE: While patient engagement is becoming more customary in developing health products, its monitoring and evaluation to understand processes and enhance impact are challenging. This article describes a patient engagement monitoring and evaluation (PEME) framework, co-created and tailored to the context of community advisory boards (CABs) for rare diseases in Europe. It can be used to stimulate learning and evaluate impacts of engagement activities. METHODS: A participatory approach was used in which data collection and analysis were iterative. The process was based on the principles of interactive learning and action and guided by the PEME framework. Data were collected via document analysis, reflection sessions, a questionnaire, and a workshop. RESULTS: The tailored framework consists of a theory of change model with metrics explaining how CABs can reach their objectives. Of 61 identified metrics, 17 metrics for monitoring the patient engagement process and short-term outcomes were selected, and a "menu" for evaluating long-term impacts was created. Example metrics include "Industry representatives' understanding of patients' unmet needs;" "Feeling of trust between stakeholders;" and "Feeling of preparedness." "Alignment of research programs with patients' needs" was the highest-ranked metric for long-term impact. CONCLUSIONS: Findings suggest that process and short-term outcome metrics could be standardized across CABs, whereas long-term impact metrics may need to be tailored to the collaboration from a proposed menu. Accordingly, we recommend that others adapt and refine the PEME framework as appropriate. The next steps include implementing and testing the evaluation framework to stimulate learning and share impacts.

Designing a Healthy Food-Store Intervention; A Co-Creative Process Between Interventionists and Supermarket Actors.

BACKGROUND: Without consideration for the food system in which healthy food-store interventions (HFIs) are implemented, their effects are likely to be unsustainable. Co-creation of HFIs by interventionists and food-store actors may improve contextual fit and therefore the effectiveness and sustainability of interventions, but there are few case studies on the topic. This study aims to provide insights into the integration of knowledge from contextual actors into HFI designs, through a co-creative process, to illustrate potential challenges, advantages, and outcomes. METHODS: We describe the co-creative design of an HFI in a Dutch supermarket chain, conducted through three increasingly in-depth design phases. Each phase consisted of a cycle of theorizing (gather insights from literature, feedback, and pilot studies), building (develop intervention designs), and evaluating (interviews or workshops with supermarket actors, to explore barriers and facilitators for sustainable implementation), feeding back into the next phase (drafting adapted intervention designs, based on feedback, and research input). Interview transcripts underwent a qualitative content analysis. RESULTS: We co-creatively designed four types of interventions to promote healthier food choices in supermarkets: (1) price strategies, (2) product presentation and positioning, (3) signage, and (4) interactive messaging. Interventions were aligned with the culture, structures and practices of the supermarket chain, while simultaneously challenging these system characteristics. For example, the idea of price promotions on healthy foods was well-received and encountered only practical barriers, which were easily resolved. However, the specification of tax-like price increases on unhealthy foods led to substantial resistance on cultural and commercial grounds, which were resolved through support from a key supermarket actor. CONCLUSION: Our results illustrate the potential benefits of co-creation approaches in HFI design. We reflect on the value of more easily accepted interventions to develop collaborative momentum and more radical interventions to drive more substantial changes.

Valuing patient engagement: Reflexive learning in evidence generation practices for health technology assessment.

Much attention in health technology assessment (HTA), a health system governance mechanism used for determining the value of health technologies, is being paid to improving the quality and patient-relevance of the evidence used in assessment pratices. Whilst the direct involvement of patient actors throughout HTA processes has become a more routine element of institutional practice, the 'impacts' of patient engagement (PE) initiatives have proven difficult to determine and enhance. In reflexive governance theories, reflexive learning is a critical mechanism of multi-stakeholder arrangements that better handles the complexities of technologies and how they are understood through governance practices. This paper explores how reflexive learning can be used to build a richer conceptualisation of PE in HTA, in order to generate suggestions for enhancing PE practices and their impact. We critically apply reflexive learning insights on qualitative data derived from the co-creation process of a PE evaluation framework, organised through an EU project focused on strengthening PE practices across medicines development (2018-2020), including 24 interactive case studies, 3 multi-stakeholder workshops, and our observations throughout the project. The findings characterise two dimensions of reflexive learning in PE: First, reflexive learning refers to the adaptive reorganisation of evidence generating practices, including the revision of medicines' evaluation criteria and the conditions under which evidence 'relevant' to HTA is constructed. Second, reflexive learning spotlights the sociopolitics which shape technology evaluation. Four themes affecting meaningful and sustained PE in medicines development were analysed: institutional boundaries due to established evaluation criteria; timing of engagements; network relations between institutional actors; and the politics of patient representation. Extending beyond discrete PE activities and their reported impacts, reflexive forms of learning are crucial to yielding more 'meaningful' PE for HTA and medicines development, facilitating a HTA practice that more meaningfully deals with the complexities of medicines evidence generation.

Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics.

BACKGROUND: Patient engagement is becoming more customary in medicine development. However, embedding it in organizational decision-making remains challenging, partly due to lack of agreement on its value and the means to evaluate it. The objective of this project was to develop a monitoring and evaluation framework, with metrics, to demonstrate impact and enhance learning. METHODS: A consortium of five patient groups, 15 biopharmaceutical companies and two academic groups iteratively created a framework in a multi-phase participatory process, including analysis of its application in 24 cases. RESULTS: The framework includes six components, with 87 metrics and 15 context factors distributed among (sub)components: (a) Input: expectations, preparations, resources, representativeness of stakeholders; (b) Activities/process: structure, management, interactions, satisfaction; (c) Learnings and changes; (d) Impacts: research relevance, study ethics and inclusiveness, study quality and efficiency, quality of evidence and uptake of products, empowerment, reputation and trust, embedding of patient engagement; (e) Context: policy, institutional, community, decision-making contextual factors. Case study findings show a wide variation in use of metrics. There is no 'one size fits all' set of metrics appropriate for every initiative or organization. Presented sample sets of metrics can be tailored to individual situations. CONCLUSION: Introducing change into any process is best done when the value of that change is clear. This framework allows participants to select what metrics they value and assess to what extent patient engagement has contributed. PATIENT CONTRIBUTION: Five patient groups were involved in all phases of the study (design, conduct, interpretation of data) and in writing the manuscript.

Toward High-Value, Cost-Conscious Care - Supporting Future Doctors to Adopt a Role as Stewards of a Sustainable Healthcare System.

PHENOMENON: In order to tackle the persistent rise of healthcare costs, physicians as "stewards of scarce resources" could be effective change agents, extending cost containment efforts from national policy to the micro level. Current programs focus on educating future doctors to deliver "high-value, cost-conscious care" (HVCCC). Although the importance of HVCCC education is increasingly recognized, there is a lag in implementation. Whereas recent efforts generated effective interventions that promote HVCCC in a local context, gaps persist in the examination of system factors that underlie broader successful and lasting implementation in educational and healthcare practices. APPROACH: We conducted a realist evaluation of a program focused on embedding HVCCC in postgraduate education by encouraging and supporting residents to set up "HVCCC projects" to promote HVCCC delivery. We interviewed 39 medical residents and 10 attending physicians involved in such HVCCC projects to examine HVCCC implementation in different educational and healthcare contexts. We held six reflection sessions attended by the program commissioners and educationalists to validate and enrich the findings. FINDINGS: A realist evaluation was used to unravel the facilitators and barriers that underlie the implementation of HVCCC in a variety of healthcare practices. Whereas research activities regularly stop after the identification of facilitators and barriers, we used these insights to formulate four high-value, cost-conscious care carriers: (1) continue to promote HVCCC awareness, (2) create an institutional structure that fosters HVCCC, (3) continue the focus on projects for embedding HVCCC in practice, (4) generate evidence. The carriers support residents, attendings and others involved in educating physicians in training to develop and implement innovative HVCCC projects. INSIGHTS: Strategies to promote physician stewardship go beyond the formal curriculum and require a transformation in the informal educational system from one that almost exclusively focuses on medical discussions to one that also considers value and cost as part of medical decision-making. The HVCCC carriers propose a set of strategies and system adaptations that could aid the transformation toward a HVCCC supporting context.

Shared decision-making and the nuances of clinical work: Concepts, barriers and opportunities for a dynamic model.

BACKGROUND: Shared decision-making (SDM) is considered the "final stage" that completes the implementation of evidence-based medicine. Yet, it is also considered the most neglected stage. SDM shifts the epistemological authority of medical knowledge to one that deliberately includes patients' values and preferences. Although this redefines the work of the clinical encounter, it remains unclear what a shared decision is and how it is practiced. AIM: The aim of this paper is to describe how healthcare professionals manoeuvre the nuances of decision-making that shape SDM. We identify barriers to SDM and collect strategies to help healthcare professionals think beyond existing solution pathways and overcome barriers to SDM. METHODS: Semi-structured interviews were conducted with 68 healthcare professionals from psychiatry, internal medicine, intensive care medicine, obstetrics and orthopaedics and 15 patients. RESULTS: This study found that healthcare professionals conceptualize SDM in different ways, which indicates a lack of consensus about its meaning. We identified five barriers that limit manoeuvring space for SDM and contest the feasibility of a uniform, normative SDM model. Three identified barriers: (a) "not all patients want new role," (b) "not all patients can adopt new role," and (c) "attitude," were linked to strategies focused on the knowledge, skills and attitudes of individual healthcare professionals. However, systemic barriers: (d) "prioritization of medical issues" and (e) "lack of time" render such individual-focused strategies insufficient. CONCLUSION: There is a need for a more nuanced understanding of SDM as a "graded" framework that allows for flexibility in decision-making styles to accommodate patient's unique preferences and needs and to expand the manoeuvring space for decision-making. The strategies in this study show how our understanding of SDM as a process of multi-dyadic interactions that spatially exceed the consulting room offers new avenues to make SDM workable in contemporary medicine.

Giving patients a voice: a participatory evaluation of patient engagement in Newfoundland and Labrador Health Research.

BACKGROUND: Efforts to engage patients as partners in health research have grown and thereby the need for feedback and evaluation. In this pilot evaluation study, we aimed to 1) evaluate patient engagement in health research projects in Newfoundland and Labrador, Canada, and 2) learn more about how to best monitor and evaluate patient engagement. This paper presents the results of our participatory evaluation study and the lessons learned. The evaluation of the projects was driven by questions patients wanted answered. METHODS: We conducted a formative evaluation of patient engagement in health research projects. Projects spanned a variety of topics, target groups, research designs and methods of patient engagement. Participants included principal investigators (n = 6) and their patient partners (n = 14). Furthermore, graduate students (n = 13) working on their own research projects participated. Participants completed an online survey with closed and open-ended questions about their patient engagement efforts, experiences and preliminary outcomes. Patients were involved as co-investigators in the entire evaluation study. We used qualitative methods to evaluate our participatory process. RESULTS: The evaluation study results show that most patients and researchers felt prepared and worked together in various phases of the research process. Both groups felt that the insights and comments of patients influenced research decisions. They believed that patient engagement improved the quality and uptake of research. Students felt less prepared and were less satisfied with their patient engagement experience compared to researchers and their patient partners. Involvement of patient co-investigators in this evaluation resulted in learnings, transparency, validation of findings and increased applicability. Challenges were to select evaluation questions relevant to all stakeholders and to adapt evaluation tools to local needs. CONCLUSIONS: Our findings show that researchers, patient partners and students value patient engagement in health research. Capacity building at the supervisor level in academic institutions is needed to better support students. Sufficient time is also needed to permit observable outcomes. Participatory evaluation may increase the relevance and usefulness of information, but it also raises issues such as who defines and designs the content of evaluation tools. A co-creation process is required to develop appropriate monitoring and evaluation strategies.

Reducing cardiometabolic risk in adults with a low socioeconomic position: protocol of the Supreme Nudge parallel cluster-randomised controlled supermarket trial.

BACKGROUND: Unhealthy lifestyle behaviours such as unhealthy dietary intake and insufficient physical activity (PA) tend to cluster in adults with a low socioeconomic position (SEP), putting them at high cardiometabolic disease risk. Educational approaches aiming to improve lifestyle behaviours show limited effect in this population. Using environmental and context-specific interventions may create opportunities for sustainable behaviour change. In this study protocol, we describe the design of a real-life supermarket trial combining nudging, pricing and a mobile PA app with the aim to improve lifestyle behaviours and lower cardiometabolic disease risk in adults with a low SEP. METHODS: The Supreme Nudge trial includes nudging and pricing strategies cluster-randomised on the supermarket level, with: i) control group receiving no intervention; ii) group 1 receiving healthy food nudges (e.g., product placement or promotion); iii) group 2 receiving nudges and pricing strategies (taxing of unhealthy foods and subsidizing healthy foods). In collaboration with a Dutch supermarket chain we will select nine stores located in low SEP neighbourhoods, with the nearest competitor store at > 1 km distance and managed by a committed store manager. Across the clusters, a personalized mobile coaching app targeting walking behaviour will be randomised at the individual level, with: i) control group; ii) a group receiving the mobile PA app. All participants (target n = 1485) should be Dutch-speaking, aged 45-75 years with a low SEP and purchase more than half of their household grocery shopping at the selected supermarkets. Participants will be recruited via advertisements and mail-invitations followed by community-outreach methods. Primary outcomes are changes in systolic blood pressure, LDL-cholesterol, HbA1c and dietary intake after 12 months follow-up. Secondary outcomes are changes in diastolic blood pressure, blood lipid markers, waist circumference, steps per day, and behavioural factors including healthy food purchasing, food decision style, social cognitive factors related to nudges and to walking behaviours and customer satisfaction after 12 months follow-up. The trial will be reflexively monitored to support current and future implementation. DISCUSSION: The findings can guide future research and public health policies on reducing lifestyle-related health inequalities, and contribute to a supermarket-based health promotion intervention implementation roadmap. TRIAL REGISTRATION: Dutch Trial Register ID NL7064, 30th of May, 2018.

Systematic review: a systems innovation perspective on barriers and facilitators for the implementation of healthy food-store interventions.

BACKGROUND: Due to their central position in the modern food system, food stores present a unique opportunity to promote healthy dietary behaviour. However, there is a lack of insight into the factors that impede or enhance the implementation of nutritional interventions in food stores. We applied a systems innovation and implementation science framework to the identification of such barriers and facilitators. METHODS: We conducted a systematic literature review. A search string was developed to identify qualitative and quantitative articles on environmental nutritional interventions in the food store. Four databases were systematically searched for studies published between 2000 and 2018. Eligible publications described study designs or original studies, focused on stimulating healthier dietary behaviour through environmental changes in retail settings and contained information on the perceptions or experiences of retailers or interventionists regarding the implementation process of the intervention. Context-descriptive data was extracted and a quality assessment was performed. RESULTS: We included 41 articles, of which the majority was conducted in the USA and involved single stores or a mix of single and multi-store organisations. We categorized barriers and facilitators into 18 themes, under five domains. In the 'outer setting' domain, most factors related to consumers' preferences and demands, and the challenge of establishing a supply of healthy products. In the 'inner setting' domain, these related to conflicting values regarding health promotion and commercial viability, store lay-out, (insufficient) knowledge and work capacity, and routines regarding waste avoidance and product stocking. In the 'actors' domain, no major themes were found. For the 'intervention 'domain', most related to intervention-context fit, money and resource provision, material quality, and the trade-offs between commercial costs and risks versus commercial and health benefits. For the 'process' domain, most factors related to continuous engagement and strong relationships. CONCLUSIONS: This review provides a comprehensive overview of barriers and facilitators to be taken into account when implementing nutritional interventions in food stores. Furthermore, we propose a novel perspective on implementation as the alignment of intervention and retail interests, and a corresponding approach to intervention design which may help avoid barriers, and leverage facilitators. TRIAL REGISTRATION: PROSPERO; CRD42018095317.

Client-centred maternity care from women's perspectives: Need for responsiveness.

BACKGROUND: Client- or woman-centred care has become a major focus in improving Western maternity care systems. In measures to increase client-centredness, the perspectives of maternity care professionals and policymakers often predominate. However, to put women at the centre of maternity care, insights into their perspectives are important. Therefore, the aim of this study is to analyze the perspectives of women on maternity care and to provide recommendations on how to achieve client-centred care. METHODS: A qualitative study was conducted comprising six focus groups (N = 43) and 20 semi-structured interviews with women who had given birth less than one year ago in the North-West Netherlands region. For data analysis, a framework based on existing woman-centred care models and the patient-centred care model of Maassen et al. (2017) was applied. FINDINGS: The issues women addressed, underlined the importance of all four dimensions of the framework (client, interaction, professional and organization). Although women were in general positive about the maternity care services, there were differences regarding client-centredness between community-based primary care and secondary/tertiary hospital care. The latter was evaluated more negatively than primary care with regard to taking women's background into account, communicating openly, showing a caring attitude and providing continuous care by a cohesive team. Although primary care appeared to be better able than secondary/tertiairy care to adapt to clients' preferences, the women described various cases throughout the care process where they did not feel heard. Besides a lack of flexibility to override existing protocols, activities and roles and tokenism regarding the use of satisfaction questionnaires and the birthplan were mentioned. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: This study demonstrated that from women's perspective, client-centred maternity care means being responsive to their wishes and needs across all four (client, interaction, professional and organization) dimensions. Current measures often focus on the organizational dimension, integrating different divisions of care. To achieve client-centred care, future measures should foster responsiveness on all four dimensions. This entails empowering maternity care professionals to have a reflective interaction with (especially less educated) women, by acquiring conversational and reflexive skills, within a flexible care system adjusting to specific wishes and needs.