Experiences of co-producing person-centred and cohesive clinical pathways in the national system for knowledge-based management in Swedish healthcare: a qualitative study.

BACKGROUND: When the 21 Swedish county councils decided to collaborate in the creation of a national system for knowledge-based management, patient participation was mandatory. Patient and next-of-kin representatives (PR) co-produced person-centred and cohesive clinical pathways together with healthcare professionals (HPR). Research on co-production in healthcare at the national level is scarce. The aim of this study is to explore experiences of patient participation from the perspectives of both PRs and HPRs when co-producing clinical pathways within the Swedish nationwide healthcare system for knowledge-based management. METHODS: A qualitative study was conducted. A strategic sample of nine PRs and eight HPRs were interviewed individually between August 2022 and January 2023 using a semi-structured interview guide. We analysed data using an inductive content analysis. RESULTS: Three main categories were identified: (1) Finding appropriate patient representativeness; (2) Working methods that facilitate a patient perspective; and (3) Influence of the patient perspective in the clinical pathways. CONCLUSIONS: The study demonstrates the importance of patient and next-of-kin participation in the construction of clinical pathways at the national level. The results provide a platform for further research on patient participation on the national level and add to studies on if and how patient participation on this level has an impact on how the clinical pathways are put into practice at the micro level, and the support provided at the meso level. The study contributes to the growing body of literature studying patient participation and co-production. TRIAL REGISTRATION: Region Örebro County ID 276,940. An advisory opinion was obtained from the Swedish Ethical Review Authority (2021-05899-01).

An Evaluation of the Relationship between Training of Health Practitioners in a Person-Centred Care Model and their Person-Centred Attitudes.

Introduction: The Esther Network (EN) person-centred care (PCC) advocacy training aims to promote person-centred attitudes among health practitioners in Singapore. This study aimed to assess the relationship between the training and practitioners' PCC attributes over a 3-month period, and to explore power sharing by examining the PCC dimensions of "caring about the service user as a whole person" and the "sharing of power, control and information". Methods: A repeated-measure study design utilising the Patient-Practitioner Orientation Scale (PPOS), was administered to 437 training participants at three time points - before training (T1), immediately after (T2) and three months after training (T3). A five-statement questionnaire captured knowledge of person-centred care at T1 and T2. An Overall score, Caring and Sharing sub-scores were derived from the PPOS. Scores were ranked and divided into three groups (high, medium and low). Ordinal Generalised Estimating Equation (GEE) model analysed changes in PPOS scores over time. Results: A single, short-term training appeared to result in measurable improvements in person-centredness of health practitioners, with slight attenuation at T3. There was greater tendency to "care" than to "share power" with service users across all three time points, but the degree of improvement was larger for sharing after training. The change in overall person-centred scores varied by sex and profession (females score higher than males, allied health showed a smaller attenuation at T3). Conclusion: Training as a specific intervention, appeared to have potential to increase health practitioners' person-centredness but the aspect of equalising power was harder to achieve within a hierarchical structure and clinician-centric culture. An ongoing network to build relationships, and a supportive system to facilitate individual and organisational reflexivity can reinforce learning.

Lived experience of persons with multiple sclerosis: A qualitative interview study.

INTRODUCTION: Multiple sclerosis (MS) is a chronic autoimmune disease with a substantial impact on quality of life and functional capability. The prognosis of MS has changed over time due to the development of increasingly effective therapies. As the knowledge and perceptions of persons living with chronic conditions increasingly have been acknowledged, it has become important to understand lived experiences with a focus on everyday events and experiences as a way of knowing and interpreting the world. Exploring context-specific lived experiences as a source of knowledge about the disease and care may contribute to more precision in designing care services. The aim of this study was to explore the lived experience of persons living with MS in a Swedish context. MATERIALS AND METHODS: A qualitative interview study was conducted with both purposeful and random sampling strategies, resulting in 10 interviews. Data were analyzed using inductive thematic content analysis. RESULTS: The analysis generated 4 overarching themes with 12 subthemes, the 4 themes were: perspectives on life and health, influence on everyday life, relations with healthcare, and shared healthcare processes. The themes are concerned with the patients' own perspectives and context as well as medical and healthcare-related perspectives. Patterns of shared experiences were found, for example, in the diagnosis confirmation, future perspectives, and planning and coordination. More diverse experiences appeared concerning relations with others, one's individual requirements, symptoms and consequences, and knowledge building. CONCLUSION: The findings suggest a need for a more diverse and coproduced development of healthcare services to meet diverse needs in the population with greater acknowledgement of the person's lived experience, including consideration of the complexity of the disease, personal integrity, and different ways of knowing. Findings from this study will be further explored together with other quantitative and qualitative data.

How a point-of-care dashboard facilitates co-production of health care and health for and with individuals with psychotic disorders: a mixed-methods case study.

BACKGROUND: Individuals with psychotic disorders experience widespread treatment failures and risk early death. Sweden's largest department specializing in psychotic disorders sought to improve patients' health by developing a point-of-care dashboard to support joint planning and co-production of care. The dashboard was tested for 18 months and included more than 400 patients at two outpatient clinics. METHODS: This study evaluates the dashboard by addressing two questions: 1) Can differences in health-related outcome measures be attributed to the use of the dashboard? 2) How did the case managers experience the accessibility, use, and usefulness of the dashboard for co-producing care with individuals with psychotic disorders? This mixed-method case study used both Patient-Reported Outcome Measures (PROM) and data from a focus group interview with case managers. Data collection and analysis were framed by the Clinical Adoption Meta Model (CAMM) phases: i) accessibility, ii) system use, iii) behavior, and iv) clinical outcomes. The PROM used was the 12-item World Health Organization Disability Assessment Schedule (WHODAS 2.0), which assesses functional impairment and disability. Patients at clinics using the dashboard were matched with patients at clinics not using the dashboard. PROM data were compared using non-parametric statistics due to skewness in distribution. The focus group included five case managers who had experience using the dashboard with patients. RESULTS: Compared to patients from clinics that did not use the dashboard, patients from clinics that did use the dashboard improved significantly overall (p = 0.045) and in the domain self-care (p = 0.041). Focus group participants reported that the dashboard supported data feedback-informed care and a proactive stance related to changes in patients' health. The dashboard helped users identify critical changes and enabled joint planning and evaluation. CONCLUSION: Dashboard use was related to better patient health (WHODAS scores) when compared with matched patients from clinics that did not use the dashboard. In addition, case managers had a positive experience using the dashboard. Dashboard use might have lowered the risk for missing critical changes in patients' health while increasing the ability to proactively address needs. Future studies should investigate how to enhance patient co-production through use of supportive technologies.

A starter's guide to learning and teaching how to coproduce healthcare services.

BACKGROUND: There has been insufficient attention paid to the role of learning in co-production-both how service users and professional service providers learn to co-produce effectively and how the lessons of co-production are captured at a service level. OBJECTIVE: We aimed to develop and test a curriculum to support healthcare professionals' interest in learning how to co-produce health and healthcare services with patients. METHODS: We developed a co-production curriculum that was tested iteratively in multiple in-person and virtual teaching sessions and short courses. We conducted a formative evaluation of the co-production curriculum and teaching tools to tailor the curriculum. RESULTS: Several theories underpin our approach to learning and teaching how to co-produce healthcare services. The co-production curriculum is grounded in systems theory and shares elements of educational theories, namely, the postmodern curriculum matrix, the actor network theory and situated learning in communities of practice. Learning participants valued the sense of community, the experiential learning environment, and the practical methods to support their exploration of co-production. CONCLUSION: This paper summarizes the educational theories that underpin our efforts to develop and implement the curriculum, reports on a formative assessment conducted with learners, and makes recommendations for creating an environment for learning how health professionals can co-produce health and healthcare with patients.

Suicide as an incident of severe patient harm: a retrospective cohort study of investigations after suicide in Swedish healthcare in a 13-year perspective.

OBJECTIVES: To explore how mandatory reporting to the supervisory authority of suicides among recipients of healthcare services has influenced associated investigations conducted by the healthcare services, the lessons obtained and whether any suicide-prevention-related improvements in terms of patient safety had followed. DESIGN AND SETTINGS: Retrospective study of reports from Swedish primary and secondary healthcare to the supervisory authority after suicide. PARTICIPANTS: Cohort 1: the cases reported to the supervisory authority in 2006, from the time the reporting of suicides became mandatory, to 2007 (n=279). Cohort 2: the cases reported in 2015, a period of well-established reporting (n=436). Cohort 3: the cases reported from September 2017, which was the time the law regarding reporting was removed, to November 2019 (n=316). PRIMARY AND SECONDARY OUTCOME MEASURES: Demographic data and received treatment in the months preceding suicide were registered. Reported deficiencies in healthcare and actions were categorised by using a coding scheme, analysed per individual and aggregated per cohort. Separate notes were made when a deficiency or action was related to a healthcare-service routine. RESULTS: The investigations largely adopted a microsystem perspective, focusing on final patient contact, throughout the overall study period. Updating existing or developing new routines as well as educational actions were increasingly proposed over time, while sharing conclusions across departments rarely was recommended. CONCLUSIONS: The mandatory reporting of suicides as potential cases of patient harm was shown to be restricted to information transfer between healthcare providers and the supervisory authority, rather than fostering participative improvement of patient safety for suicidal patients.The similarity in outcomes across the cohorts, regardless of changes in legislation, suggests that the investigations were adapted to suit the structure of the authority's reports rather than the specific incident type, and that no new service improvements or lessons are being identified.

The role of professional logics in quality register use: a realist evaluation.

BACKGROUND: Clinical practice improvements based on quality-register data are influenced by multiple factors. Although there is agreement that information from quality registers is valuable for quality improvement, practical ways of organising register use have been notoriously difficult to realise. The present study sought to investigate the mechanisms that lead various clinicians to use quality registers for improvement. METHODS: This research involves studying individuals' decisions in response to a Swedish programme focusing on increasing the use of quality registers. Through a case study, we focused on heart failure care and its corresponding register: the Swedish Heart Failure Register. The empirical data consisted of a purposive sample collected longitudinally by qualitative methods between 2013 and 2015. In total, 18 semi-structured interviews were carried out. We used realist evaluation to identify contexts, mechanisms, and outcomes. RESULTS: We identified four contexts - registration, use of output data, governance, and improvement projects - that provide conditions for the initiation of specific mechanisms. Given a professional theoretical perspective, we further showed that mechanisms are based on the logics of either organisational improvement or clinical practice. The two logics offer insights into the ways in which clinicians choose to embrace or reject certain registers' initiatives. CONCLUSIONS: We identified a strong path dependence, as registers have historically been tightly linked to the medical profession's competence. Few new initiatives in the studied programme reach the clinical context. We explain this through the lack of an organisational improvement logic and its corresponding mechanisms in the context of the medical profession. Implementation programmes must understand the logic of clinical practice; that is, be integrated with the ways in which work is carried out in everyday practice. Programmes need to be better at helping core health professionals to reach the highest standards of patient care.

Deficiencies in healthcare prior to suicide and actions to deal with them: a retrospective study of investigations after suicide in Swedish healthcare.

OBJECTIVES: The overall aim of this study was to aggregate the conclusions of all investigations conducted after suicides reported to the supervisory authority in Sweden in 2015, and to identify deficiencies in healthcare found in these investigations; the actions proposed to deal with the deficiencies; the level of the organisational hierarchy (micro-meso-macro) in which the deficiencies and actions were situated; and outcomes of the supervisory authority's decisions. DESIGN AND SETTING: This is a retrospective study of all reports from Swedish primary and secondary healthcare after suicide to the regulatory authority in Sweden in 2015. RESULTS: In 55% (n=240) of cases, healthcare providers reported healthcare deficiencies that contributed to suicide; these deficiencies were primarily in 'suicide risk assessment' and 'treatment'. Actions aimed at preventing new suicides were proposed in 80% of cases (n=347). By far, the most frequent actions were 'education and competence', present in 52% of cases (n=227) and did not much correspond with identified deficiencies. Sixty-five per cent of the deficiencies and actions were at microlevel, while the remainders were at mesolevel. In 65% (n=284) of cases, the supervisory authority approved the investigation without further requirements. CONCLUSIONS: The most common identified deficiencies were related to care in the immediate interface between patient and staff. Actions proposed to prevent new suicides were centred on single educational interventions without distinctive sustainable effects in the organisations and usually did not correspond with the identified deficiencies. Future research should examine if application of a framework based on knowledge of the suicide process, suicide prevention strategies and patient safety would enable more sophisticated investigations that could facilitate progress on suicide prevention.

Design of an online health-promoting community: negotiating user community needs with public health goals and service capabilities.

BACKGROUND: An online health-promoting community (OHPC) has the potential to promote health and advance new means of dialogue between public health representatives and the general public. The aim of this study was to examine what aspects of an OHPC that are critical for satisfying the needs of the user community and public health goals and service capabilities. METHODS: Community-based participatory research methods were used for data collection and analysis, and participatory design principles to develop a case study OHPC for adolescents. Qualitative data from adolescents on health appraisals and perspectives on health information were collected in a Swedish health service region and classified into categories of user health information exchange needs. A composite design rationale for the OHPC was completed by linking the identified user needs, user-derived requirements, and technical and organizational systems solutions. Conflicts between end-user requirements and organizational goals and resources were identified. RESULTS: The most prominent health information needs were associated to food, exercise, and well-being. The assessment of the design rationale document and prototype in light of the regional public health goals and service capabilities showed that compromises were needed to resolve conflicts involving the management of organizational resources and responsibilities. The users wanted to discuss health issues with health experts having little time to set aside to the OHPC and it was unclear who should set the norms for the online discussions. CONCLUSIONS: OHPCs can be designed to satisfy both the needs of user communities and public health goals and service capabilities. Compromises are needed to resolve conflicts between users' needs to discuss health issues with domain experts and the management of resources and responsibilities in public health organizations.

How to minimize children's environmental tobacco smoke exposure: an intervention in a clinical setting in high risk areas.

BACKGROUND: Despite the low prevalence of daily smokers in Sweden, children are still being exposed to environmental tobacco smoke (ETS), primarily by their smoking parents. A prospective intervention study using methods from Quality Improvement was performed in Child Health Care (CHC). The aim was to provide nurses with new methods for motivating and supporting parents in their efforts to protect children from ETS exposure. METHOD: Collaborative learning was used to implement and test an intervention bundle. Twenty-two CHC nurses recruited 86 families with small children which had at least one smoking parent. Using a bundle of interventions, nurses met and had dialogues with the parents over a one-year period. A detailed questionnaire on cigarette consumption and smoking policies in the home was answered by the parents at the beginning and at the end of the intervention, when children also took urine tests to determine cotinine levels. RESULTS: Seventy-two families completed the study. Ten parents (11%) quit smoking. Thirty-two families (44%) decreased their cigarette consumption. Forty-five families (63%) were outdoor smokers at follow up. The proportion of children with urinary cotinine values of >6 ng/ml had decreased. CONCLUSION: The intensified tobacco prevention in CHC improved smoking parents' ability to protect their children from ETS exposure.

[Patient safety can be ensured in clinical microsystems]. / Der kan skabes patientsikkerhed i kliniske mikrosystemer.

Patients, health-care professionals and the public expect safe health care. The system, however, is not safe and patients are being harmed. Workplace and organizational conditions and human factors contribute to these harms and a system approach is needed to avoid them. In clinical microsystems (CMS), the frontline units of health care, staff and patients can make care safer by learning about their system, its processes, members and purposes. Approaches from patient safety should be integrated in the daily work of every member of the CMS to reduce risk, implement safe practices and learn from errors. We summarize methods for use in CMS and offer ideas for fostering a proactive culture of patient safety.

Framework for assessing quality of care for inflammatory bowel disease in Sweden.

AIM: To create and apply a framework for quality assessment and improvement in care for inflammatory bowel disease (IBD) patients. METHODS: A framework for quality assessment and improvement was created for IBD based on two generally acknowledged quality models. The model of Donabedian (Df) offers a logistical and productive perspective and the Clinical Value Compass (CVC) model adds a management and service perspective. The framework creates a pedagogical tool to understand the balance between the dimensions of clinical care (CVC) and the components of clinical outcome (Df). The merged models create a framework of the care process dimensions as a whole, reflecting important parts of the IBD care delivery system in a local setting. Clinical and organizational quality measures were adopted from clinical experience and the literature and were integrated into the framework. Data were collected at the yearly check-up for 481 IBD patients during 2008. The application of the quality assessment framework was tested and evaluated in a local clinical IBD care setting in Jönköping County, Sweden. RESULTS: The main outcome was the presentation of how locally-selected clinical quality measures, integrated into two complementary models to develop a framework, could be instrumental in assessing the quality of care delivered to patients with IBD. The selected quality measures of the framework noted less anemia in the population than previously reported, provided information about hospitalization rates and the few surgical procedures reported, and noted good access to the clinic. CONCLUSION: The applied local quality framework was feasible and useful for assessing the quality of care delivered to IBD patients in a local setting.

The Paediatric Rheumatology International Trials Organisation provisional criteria for the evaluation of response to therapy in juvenile dermatomyositis.

OBJECTIVE: To develop a provisional definition for the evaluation of response to therapy in juvenile dermatomyositis (DM) based on the Paediatric Rheumatology International Trials Organisation juvenile DM core set of variables. METHODS: Thirty-seven experienced pediatric rheumatologists from 27 countries achieved consensus on 128 difficult patient profiles as clinically improved or not improved using a stepwise approach (patient's rating, statistical analysis, definition selection). Using the physicians' consensus ratings as the "gold standard measure," chi-square, sensitivity, specificity, false-positive and-negative rates, area under the receiver operating characteristic curve, and kappa agreement for candidate definitions of improvement were calculated. Definitions with kappa values >0.8 were multiplied by the face validity score to select the top definitions. RESULTS: The top definition of improvement was at least 20% improvement from baseline in 3 of 6 core set variables with no more than 1 of the remaining worsening by more than 30%, which cannot be muscle strength. The second-highest scoring definition was at least 20% improvement from baseline in 3 of 6 core set variables with no more than 2 of the remaining worsening by more than 25%, which cannot be muscle strength (definition P1 selected by the International Myositis Assessment and Clinical Studies group). The third is similar to the second with the maximum amount of worsening set to 30%. This indicates convergent validity of the process. CONCLUSION: We propose a provisional data-driven definition of improvement that reflects well the consensus rating of experienced clinicians, which incorporates clinically meaningful change in core set variables in a composite end point for the evaluation of global response to therapy in juvenile DM.