Patient engagement: What and who is it good for?

A huge and diverse literature emphasises that patient engagement is a key factor in: effective health service delivery; quality and safety; responsive health services; patient satisfaction; improved health outcomes; and reduced health care costs. Yet there are also cautionary caveats regarding this discourse. Additionally, although contemporary recommendations regarding good practice and National Health Standards point to the importance of patient engagement and health service providers are striving to implement them in practice, on the ground patient engagement is ‘all things to all people’ with widespread confusion about what patient engagement is and how it could be facilitated. In terms of scholarship, there is a dearth of theoretical and critical examination of what patient engagement constitutes, its application and effects. This analysis aims to contribute to scholarly debate and increased understanding of the use of patient engagement in health policy and practice.

If People Were Kaleidoscopes: Sharpening the Resolution on Patient Engagement in Safety

Healthcare is unacceptably error prone. The question remains why, with 20 years of evidence, is error and harm reduction not being effective? While precise numbers may be debated, all stakeholders recognize the frequency of healthcare errors is unacceptable, and greater efforts to ensure safety must occur. In recent years, one of these strategies has been the inclusion of the patient and their family as partners in safety, and has been a required organizational practice of Accreditation Canada in many of their standard sets. Existing patient advisories created to encourage engagement, have typically not included patient perspectives in their development or been comprehensively evaluated. There are no existing tools to determine if and how a patient wants to be involved in safety engagement. As such, a multi-phased study was undertaken to advance our knowledge about the client’s and family’s role in promoting safety. Phase 1 of the study was a scoping review to methodically review the existing literature about patients’ and families’ attitudes, beliefs and behaviours about their involvement in healthcare safety. Phase 2 was designed to inductively explore how a group of patients in an Ontario, Canada, community hospital, describe healthcare safety and see their role in preventing error. The study findings, which include the narratives of 30 patients and 4 family members, indicate that although there are shared themes that influence a patient’s engagement in patient safety, every individual has unique, changing beliefs, experiences and reasons for involvement. Five conceptual themes emerged from their narratives: Personal Capacity, Experiential Knowledge, Personal Character, Relationships, and Meaning of Safety. These study results will be used to develop and test a pragmatic, accessible tool to enable providers a way to collaborate with patients for determining their personal level and type of safety involvement. The most ethical and responsible approach to healthcare safety is to consider every facet and potential way for improvement. This exploratory study provides fundamental insights into the complexity of patient engagement in safety, and evidence for future steps.

Open-Source Computerized Patient-Reported Outcomes: Case Studies Illustrating Fifteen Years of Evolution

Thesis (Master's)--University of Washington, 2016-06

Talking about depression:an analogue study of physician gender and communication style on patient disclosures

Objectives: To disentangle the effects of physician gender and patient-centered communication style on patients' oral engagement in depression care. Methods: Physician gender, physician race and communication style (high patient-centered (HPC) and low patient-centered (LPC)) were manipulated and presented as videotaped actors within a computer simulated medical visit to assess effects on analogue patient (AP) verbal responsiveness and care ratings. 307 APs (56% female; 70% African American) were randomly assigned to conditions and instructed to verbally respond to depression-related questions and indicate willingness to continue care. Disclosures were coded using Roter Interaction Analysis System (RIAS). Results: Both male and female APs talked more overall and conveyed more psychosocial and emotional talk to HPC gender discordant doctors (all p <.05). APs were more willing to continue treatment with gender-discordant HPC physicians (p <.05). No effects were evident in the LPC condition. Conclusions: Findings highlight a role for physician gender when considering active patient engagement in patient-centered depression care. This pattern suggests that there may be largely under-appreciated and consequential effects associated with patient expectations in regard to physician gender that these differ by patient gender. Practice implications: High patient-centeredness increases active patient engagement in depression care especially in gender discordant dyads. © 2014.

Using patient knowledge for better health systems

Purpose – This paper describes a “work in progress” research project being carried out with a public health care provider in the UK, a large NHS hospital Trust. Enhanced engagement with patients is one of the Trust’s core principles, but it is recognised that much more needs to be done to achieve this, and that ICT systems may be able to provide some support. The project is intended to find ways to better capture and evaluate the “voice of the patient” in order to lead to improvements in health care quality, safety and effectiveness. Design/methodology/approach – We propose to investigate the use of a patient-orientated knowledge management system (KMS) in managing knowledge about and from patients. The study is a mixed methods (quantitative and qualitative) investigation based on traditional action research, intended to answer the following three research questions: (1) How can a KMS be used as a mechanism to capture and evaluate patient experiences to provoke patient service change (2) How can the KMS assist in providing a mechanism for systematising patient engagement? (3) How can patient feedback be used to stimulate improvements in care, quality and safety? Originality/value –This methodology aims to involve patients at all phases of the study from its initial design onwards, thus leading to an understanding of the issues associated with using a KMS to manage knowledge about and for patients that is driven by the patients themselves. Practical implications – The outcomes of the project for the collaborating hospital will be firstly, a system for capturing and evaluating knowledge about and from patients, and then as a consequence, improved outcomes for both the patients and the service provider. More generally, it will produce a set of guidelines for managing patient knowledge in an NHS hospital that have been tested in one case example.

‘Working with the team’ : an exploratory study of improved type 2 diabetes management in a new model of integrated primary/secondary care

This study aimed to explore how a new model of integrated primary/secondary care for type 2 diabetes management, the Brisbane South Complex Diabetes Service (BSCDS), related to improved diabetes management in a selected group of patients. We used a qualitative research design to obtain detailed accounts from the BSCDS via semi-structured interviews with 10 patients. The interviews were fully transcribed and systematically coded using a form of thematic analysis. Participants’ responses were grouped in relation to: (1) Patient-centred care; (2) Effective multiprofessional teamwork; and (3) Empowering patients. The key features of this integrated primary/secondary care model were accessibility and its delivery within a positive health care environment, clear and supportive interpersonal communication between patients and health care providers, and patients seeing themselves as being part of the team-based care. The BSCDS delivered patient-centred care and achieved patient engagement in ways that may have contributed to improved type 2 diabetes management in these participants.

Contextualising co-creation of value in electronic personal health records

This conceptual paper is a preliminary part of an ongoing study into take-up of electronic personal health records (ePHRs). The purpose of this work is to contextually ‘operationalise' Grönroos’ (2012) model of value co-creation in service for ePHRs. Using findings in the extant literature we enhance theoretical and practical understanding of the potential for co-creation of value with ePHRs for relevant stakeholders. The research design focused on the selection and evaluation of relevant literature to include in the discussion. The objective was to demonstrate which articles can be used to 'contextualise' the concepts in relation to relevant healthcare providers and patient engagement in the co-creation of value from having shared ePHRs. Starting at the service concept, that is, what the service provider wants to achieve and for whom, there is little doubt that there are recognised benefits that co-create value for both healthcare providers and healthcare consumers (i.e. patients) through shared ePHRs. We further highlight both alignments and misalignments in the resources and activities concepts between stakeholder groups. Examples include the types of functionalities as well as the interactive and peer communication needs perceived as useful for healthcare providers compared to healthcare consumers. The paper has implications for theory and practice and is an original and innovative approach to studying the co-creation of value in eHealth delivery.

La négativité en litige : Heidegger, Hegel et l’origine de la négation dialectique

Dans le cadre de cette thèse, nous nous proposons d’explorer la patiente explication que Heidegger a poursuivie avec Hegel à propos de l’origine de la négativité – problème qui s’impose de fait à titre d’« unique pensée d’une pensée qui pose la question de l’être ». Partant du constat d’une affinité insoupçonnée entre les deux penseurs quant au rôle insigne qui doit revenir à la négation en philosophie, nous entendons percer à jour les motifs de la constante fin de non-recevoir que Heidegger oppose néanmoins à la méthode dialectique de son plus coriace adversaire. Afin de rendre justice aux différents rebondissements d’une explication en constante mutation, et qui, de surcroît, traverse l’ensemble de l’œuvre de Heidegger, nous procédons à une division chronologique qui en circonscrit les quatre principaux moments. I. En un premier temps, notre regard se porte ainsi sur l’opposition résolue que le jeune Heidegger manifeste à l’égard de la montée du néo-hégélianisme, au nom d’une appropriation toute personnelle de l’intuitionnisme husserlien. Les transformations auxquelles il soumet la méthode phénoménologique de son maître doivent néanmoins laisser transparaître un furtif emprunt à la dialectique hégélienne, dont le principal mérite serait d’avoir conféré une fonction productrice à la négation. II. Le propos d’Être et temps demeure toutefois bien discret quant à cette dette méthodologique, bien que ses vestiges se laissent exhumer, notamment sous la forme d’une négation contre-déchéante dont l’intervention essentielle ponctue l’analytique existentiale. C’est qu’un désaccord subsiste entre Heidegger et son prédécesseur quant à l’origine ontologique de la néantité, qui semble devoir se dérober à toute forme de sursomption dialectique. III. Loin d’être alors définitivement réglé, le problème de l’origine du négatif rejaillit au cœur d’une nouvelle mouture métaphysique du projet heideggérien, la minant peut-être même en son fond. Il s’agit en l’occurrence de disputer à Hegel une compréhension plus originaire du néant, comprise comme témoignage de la finitude de l’être lui-même et s’inscrivant en faux face à l’accomplissement spécifiquement hégélien de la métaphysique. IV. Des tensions qui ne sont pas étrangères à cette délicate entreprise entraînent toutefois Heidegger sur la voie d’un dépassement de l’onto-théo-logie et de l’achèvement technique que Hegel lui a préparé. Il s’agit dès lors de situer l’origine abyssale du négatif auprès d’un irréductible retrait de l’estre, à l’encontre de l’oubli nihiliste auquel Hegel l’aurait confinée en la résorbant au sein de l’absolue positivité de la présence. Par là même, Heidegger propose un concept de négation qu’il juge plus originaire que son contrepoids dialectique, négation à laquelle il attribue la forme d’une réponse interrogative, patiente et attentive à la réticence hésitante de l’événement appropriant. Mais est-ce suffisant pour soutenir qu’il parvient, en définitive, à se libérer de l’embarras dialectique qui semble coller à sa pensée et qui exige de lui un constant effort de distanciation ? Cette thèse entend contribuer à établir les conditions d’une décision à cet égard.

Healthcare-associated infections: challenges to public health in Brazil

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)

Validação de conteúdo das intervenções de enfermagem “Ensino: Pré-operatório” e “Ensino: Procedimento/Tratamento” da Classificação das Intervenções de Enfermagem, para procedimento percutâneo em hemodinâmica

Pós-graduação em Enfermagem (mestrado profissional) - FMB

Le cure oncologiche e la prospettiva del paziente. Revisione di letteratura e un caso di studio

Numerose ricerche indicano i modelli di cure integrate come la migliore soluzione per costruire un sistema più efficace ed efficiente nella risposta ai bisogni del paziente con tumore, spesso, però, l’integrazione è considerata da una prospettiva principalmente clinica, come l’adozione di linee guida nei percorsi della diagnosi e del trattamento assistenziale o la promozione di gruppi di lavoro per specifiche patologie, trascurando la prospettiva del paziente e la valutazione della sua esperienza nei servizi. Il presente lavoro si propone di esaminare la relazione tra l’integrazione delle cure oncologiche e l’esperienza del paziente; com'è rappresentato il suo coinvolgimento e quali siano i campi di partecipazione nel percorso oncologico, infine se sia possibile misurare l’esperienza vissuta. L’indagine è stata svolta sia attraverso la revisione e l’analisi della letteratura sia attraverso un caso di studio, condotto all'interno della Rete Oncologica di Area Vasta Romagna, tramite la somministrazione di un questionario a 310 pazienti con neoplasia al colon retto o alla mammella. Dai risultati, emerge un quadro generale positivo della relazione tra l’organizzazione a rete dei servizi oncologici e l’esperienza del paziente. In particolare, è stato possibile evidenziare quattro principali nodi organizzativi che introducono la prospettiva del paziente: “individual care provider”,“team care provider”,“mixed approach”,“continuity and quality of care”. Inoltre, è stato possibile delineare un campo semantico coerente del concetto di coinvolgimento del paziente in oncologia e individuare quattro campi di applicazione, lungo tutte le fasi del percorso: “prevenzione”, “trattamento”,“cura”,“ricerca”. Infine, è stato possibile identificare nel concetto di continuità di cura il modo in cui i singoli pazienti sperimentano l’integrazione o il coordinamento delle cure e analizzare differenti aspetti del vissuto della persona e dell’organizzazione.

Towards a taxonomy of common factors in psychotherapy-results of an expert survey

BACKGROUND: How change comes about is hotly debated in psychotherapy research. One camp considers 'non-specific' or 'common factors', shared by different therapy approaches, as essential, whereas researchers of the other camp consider specific techniques as the essential ingredients of change. This controversy, however, suffers from unclear terminology and logical inconsistencies. The Taxonomy Project therefore aims at contributing to the definition and conceptualization of common factors of psychotherapy by analyzing their differential associations to standard techniques. METHODS: A review identified 22 common factors discussed in psychotherapy research literature. We conducted a survey, in which 68 psychotherapy experts assessed how common factors are implemented by specific techniques. Using hierarchical linear models, we predicted each common factor by techniques and by experts' age, gender and allegiance to a therapy orientation. RESULTS: Common factors differed largely in their relevance for technique implementation. Patient engagement, Affective experiencing and Therapeutic alliance were judged most relevant. Common factors also differed with respect to how well they could be explained by the set of techniques. We present detailed profiles of all common factors by the (positively or negatively) associated techniques. There were indications of a biased taxonomy not covering the embodiment of psychotherapy (expressed by body-centred techniques such as progressive muscle relaxation, biofeedback training and hypnosis). Likewise, common factors did not adequately represent effective psychodynamic and systemic techniques. CONCLUSION: This taxonomic endeavour is a step towards a clarification of important core constructs of psychotherapy. KEY PRACTITIONER MESSAGE: This article relates standard techniques of psychotherapy (well known to practising therapists) to the change factors/change mechanisms discussed in psychotherapy theory. It gives a short review of the current debate on the mechanisms by which psychotherapy works. We provide detailed profiles of change mechanisms and how they may be generated by practice techniques.

Once Upon a Time in Therapy: Crafting Therapeutic Narratives to Help Familiarize Children with the Therapeutic Process.

Young children often harbor misconceptions about psychotherapy and the role of psychologists. These misconceptions are ignited by rumors and misinformation that are provided to the child by a variety of sources and can compromise both the effectiveness of therapy and the therapeutic dyad. In this paper we explore how recent trends in patient engagement in child psychotherapy, cultural dynamics between patients and practitioners, and children's lack of knowledge surrounding mental health services can negatively impact therapy. Wednesday Afternoons with Dr. J. (WADJ) is a whimsical fictional therapeutic narrative created to inform children about aspects of the therapeutic process while providing adults with tangible structure surrounding how to talk to children about mental healthcare. The advantages of utilizing this narrative to prime children for therapy are discussed, as are methods for promoting the narrative to the greater community.

Developing a complex intervention to reduce time to presentation with symptoms of lung cancer

Background - Lung cancer is the commonest cause of cancer in Scotland and is usually advanced at diagnosis. Median time between symptom onset and consultation is 14 weeks, so an intervention to prompt earlier presentation could support earlier diagnosis and enable curative treatment in more cases. Aim - To develop and optimise an intervention to reduce the time between onset and first consultation with symptoms that might indicate lung cancer. Design and setting - Iterative development of complex healthcare intervention according to the MRC Framework conducted in Northeast Scotland. Method - The study produced a complex intervention to promote early presentation of lung cancer symptoms. An expert multidisciplinary group developed the first draft of the intervention based on theory and existing evidence. This was refined following focus groups with health professionals and high-risk patients. Results - First draft intervention components included: information communicated persuasively, demonstrations of early consultation and its benefits, behaviour change techniques, and involvement of spouses/partners. Focus groups identified patient engagement, achieving behavioural change, and conflict at the patient–general practice interface as challenges and measures were incorporated to tackle these. Final intervention delivery included a detailed self-help manual and extended consultation with a trained research nurse at which specific action plans were devised. Conclusion -The study has developed an intervention that appeals to patients and health professionals and has theoretical potential for benefit. Now it requires evaluation.