BACKGROUND: New digital technology presents new challenges to health care on multiple levels. There are calls for further research that considers the complex factors related to digital innovations in complex health care settings to bridge the gap when moving from linear, logistic research to embracing and testing the concept of complexity. The nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework was developed to help study complexity in digital innovations.

OBJECTIVE: This study aims to investigate the role of complexity in the development and deployment of innovations by retrospectively assessing challenges to 4 digital health care innovations initiated from the bottom up.

METHODS: A multicase retrospective, deductive, and explorative analysis using the NASSS complexity assessment tool LONG was conducted. In total, 4 bottom-up innovations developed in Region Västra Götaland in Sweden were explored and compared to identify unique and shared complexity-related challenges.

RESULTS: The analysis resulted in joint insights and individual learning. Overall, the complexity was mostly found outside the actual innovation; more specifically, it related to the organization's readiness to integrate new innovations, how to manage and maintain innovations, and how to finance them. The NASSS framework sheds light on various perspectives that can either facilitate or hinder the adoption, scale-up, and spread of technological innovations. In the domain of condition or diagnosis, a well-informed understanding of the complexity related to the condition or illness (diabetes, cancer, bipolar disorders, and schizophrenia disorders) is of great importance for the innovation. The value proposition needs to be clearly described early to enable an understanding of costs and outcomes. The questions in the NASSS complexity assessment tool LONG were sometimes difficult to comprehend, not only from a language perspective but also due to a lack of understanding of the surrounding organization's system and its setting.

CONCLUSIONS: Even when bottom-up innovations arise within the same support organization, the complexity can vary based on the developmental phase and the unique characteristics of each project. Identifying, defining, and understanding complexity may not solve the issues but substantially improves the prospects for successful deployment. Successful innovation within complex organizations necessitates an adaptive leadership and structures to surmount cultural resistance and organizational impediments. A rigid, linear, and stepwise approach risks disregarding interconnected variables and dependencies, leading to suboptimal outcomes. Success lies in embracing the complexity with its uncertainty, nurturing creativity, and adopting a nonlinear methodology that accommodates the iterative nature of innovation processes within complex organizations.

Access to digital devices and digital services increases accessibility to mental health services. We investigated access to smartphones and digital identification methods (digital-IDs) in an outpatient unit focusing on patients with psychotic disorders and functional impairments. Patients’ case managers completed an online anonymous survey. Most patients (85%) did not have digitalIDs, which is required in Sweden to access digital health care. High age and living in assisted living facilities influenced patients' access to smartphones and digitalID negatively. Even in a highly digitalized society, outpatients with psychotic disorders and functional impairments have much less access to digital technology than the population on average.

This work presents initial results of translation, design, development and expert testing of a digitally mediated dialogue based tool for schizophrenia care in Sweden. Dialog+ is a conversational methodology that has been shown to empower patients, promote co-produced and more cost-effective care. Dialog+ was translated and the digital application was redesigned to fit with the local context using human-centered design principles. Initial results of expert user testing, using heuristic evaluations and cognitive walkthroughs, shows promise for the method to work well also in Swedish settings. Initial testing with patients shows promising results. This work exemplifies how care patterns can be improved by considering the information layer of the interaction and creating shared and collaborative working spaces during treatment sessions can help to both empower patients and facilitate a more co-produced treatment plan.

Elevated pulse pressure is associated with metabolic and neurocognitive diseases. Preliminary small-scale studies among patients with psychotic disorders have indicated that these patients had an increased pulse pressure compared with controls. However, it is unclear whether and how these associations are manifested among larger heterogenous samples of patients with psychotic disorders. We examined elevated pulse pressure and its associations with demographic and clinical characteristics in a clinically representative sample of outpatients with psychotic disorders (n = 1289). In a subsample (n = 343), we also examined associations with six domains of functioning. Controlling for age and cardiovascular disease, body mass index (BMI) and employment status independently predicted the odds ratio of having elevated pulse pressure. Elevated pulse pressure was also primarily associated with the physical domains of functioning. Outpatients with psychotic disorders that have high BMI and are unemployed thus seem to be at increased risk for elevated pulse pressure and should therefore be particularly considered for blood pressure screenings.

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.

Psychotic disorders like schizophrenia have a typical onset in early adulthood with symptoms of hallucinations and disturbances of thought. Despite knowledge on what constitutes effective schizophrenia care, more than 70% of treatment attempts fail in Sweden, sometimes leading to early death. An appraisal of schizophrenia care shows a lack of ways to jointly plan and evaluate care, and an absence of a trustworthy theory-of-change. The Learning Health System (LHS) is a vision that has been translated into theories and models associated with improved outcomes for patients with other chronic conditions. The aim of this thesis is to enhance the understanding of the applicability of the LHS vision in the context of schizophrenia care, from the perspectives of both individuals and the health system in enabling coproduction of better health by addressing two research questions:

i) How can improvement of health for individuals with schizophrenia and improvement of system performance be supported by coproduction in an LHS model?

ii) Can an LHS-based intervention, i.e. the use of a point of care dashboard, contribute to better health for individuals with schizophrenia?

Studying the existing published knowledge of LHS show that the concept has not yet been applied in mental healthcare settings but has potential to increase patient coproduction, continuous improvement and better health. Different forms of coproduction are supported in the most comprehensive LHS models and applications, ranging from dashboards at point of care to platforms that can help facilitate improvement initiatives.

A case study, focused on studying the use and usefulness of a point-of-care dashboard at patient visits in outpatient care at the Department of Schizophrenia Spectrum Disorders at Sahlgrenska University Hospital in western Sweden. Use of the dashboard is associated with improved communication and health for patients. Assessment of the dashboard-project’s complexity using the Non-adoption, abandonment, scale-up, spread and sustainability complexity assessment tool (NASSS-CAT) was perceived as helpful in evaluating challenges and provided insight that can guide future development. An LHS model, that builds on both the reviewing of the literature and practical testing, is proposed.

Further research is proposed in two areas, exploration of how dashboard initiatives can support coproduction and better health for individuals with complex chronic conditions and further development of LHS models by studying different LHS initiatives regarding system properties, forms of coproduction at play and effects on health outcomes for individuals and populations.

Schizofreni och liknande psykossjukdomar debuterar vanligtvis i ung vuxen ålder med symtom som vanföreställningar och tankestörningar, vilket bidrar till svårigheter av många slag, t ex att etablera och upprätthålla relationer. Dessa tillstånd har omfattande påverkan på individers hälsa och välbefinnande, och genererar stora samhällskostnader. Trots att det finns kunskap om vad som utgör effektiva behandlingar så avbryts över 70% av behandlingsförsök i förtid i Sverige, vilket ibland leder till för tidig död. En kartläggning av psykos- och schizofrenivård i några regioner visar på svårigheter för både patienter och behandlare att systematiskt navigera mot bättre hälsa för individer. Detta beror dels på bristande sätt att gemensamt planera och utvärdera vård, och på avsaknad av en trovärdig teori om hur förändring kan drivas. Visionen om det lärande hälsosystemet (eng. Learning Health System, LHS) har omsatts till teorier och modeller som använts för att systematiskt förbättra hälsoutfall för patienter med andra kroniska tillstånd. Syftet med denna avhandling är att öka förståelsen för LHS och dess användbarhet inom schizofreni- och psykosvård i samskapandet av bättre hälsa, både ifrån patientens och hälso- och sjukvårdssystemets perspektiv. Detta syfte adresseras genom två forskningsfrågor:

i) Hur kan förbättring av hälsa för individer med schizofreni och förbättring av systemets funktion stödjas genom samskapande (eng. coproduction) i en LHS modell?

ii) Kan en LHS-baserad intervention, användningen av en digital patientöversikt under vårdbesök, bidra till bättre hälsa för individer med schizofreni?

Två processer med olika forskningsdesign har använts. Den första processen har fokuserat på att samla, kartlägga, diskutera och utvärdera tillgänglig forskningslitteratur om LHS funktionalitet och karaktäristika genom att använda olika metoder för litteraturgenomgång. I den andra processen tillämpas fallstudiemetodik, grundat på den första processen, fast med fokus på att utvärdera lokal utveckling och testning inom psykosvård på Sahlgrenska universitetssjukhuset i Göteborg, av nya arbetssätt som bygger på idéer om LHS. Detta gjordes genom att studera användning och nytta aven patientöversikt för schizofreni utformad för att användas av patienter och behandlare under vårdbesök inom öppenvård.

Litteraturgenomgången visar att LHS idéer ännu inte tillämpats inom psykiatrisk vård, men att det finns potential att öka samskapande, kontinuerliga förbättringar och stödja bättre hälsa. Olika former av samskapande stöds i de mest kompletta LHS modellerna och dess tillämpningar i praktiken. De stödjer mobilisering av intressenters resurser och engagemang i strävan mot ett gemensamt mål, med stöd av teknologier, allt från patientöversikter till stöd under besök till sociala-medie-liknande plattformar som kan stödja kommunikation, utbyte av material och gemensamma förbättringsinitiativ. Fallstudien visade positiva resultat associerade till förbättrad kommunikation och hälsa för individer i psykosvård, när de använde patientöversikten under besök i vården. Kartläggning av patientöversiktsprojektets komplexitet med verktyget NASSS-CAT (the Non-adoption, Abandonment, Scale-up, Spread and Sustainability-Complexity Assessment Tool) uppfattades som användbart för att förstå och utvärdera utmaningar och bidrog till insikter som stödjer den fortsatt utvecklingen. Utifrån avhandlingens delarbeten föreslås en modell som grund för fortsatt utveckling av ett LHS för psykiatri.

LHS egenskaper som kan guida fortsatt utveckling har identifierats genom arbetet med denna avhandling: i) identifiera systemet som ett komplext adaptivt system, ii) stödja samskapande mellan aktörer, iii) använda stödjande teknik, iv) för att möjliggöra fullständiga lärcykler, v) och använda utfallsmått för att guida förbättringar. Identifierade svårigheter, såväl i litteraturen som i empiriska studier, i att omsätta LHS-idéer, beror sannolikt på olika syn på kunskap, och om komplexitet adresseras eller inte. Framtida forskning föreslås inom två områden. För det första, fortsatt utforskande av olika patientöversiktsinitiativ för att undersöka vilka egenskaper, funktioner och former för samarbete som stödjer samskapande av bättre hälsa för individer med komplexa kroniska tillstånd. För det andra, teorier och modeller över hur förändring kan drivas blir aldrig färdiga utan kan kontinuerligt utvecklas. En LHS-modell, som den som föreslås i denna avhandling, kan användas och fortsätta utvecklas genom att studera olika LHS-initiativ när det gäller systemegenskaper, olika former av samskapande och effekter på hälsoutfall för individer och populationer.

Background: The World Health Organization Disability Assessment Schedule 2.0 (WHODAS-2.0) is a self-administered instrument to assess functional impairment. It is used in the general population as well as different patient groups. However, its application to patients with psychotic disorders may be hampered by disease-specific difficulties of self-estimation. This study aimed to examine the psychometric properties of the short (12-item) WHODAS-2.0 in a naturalistic sample of outpatients attending a psychosis clinic in Gothenburg, Sweden. Methods: Annual data from two outpatient clinics registered 2016–2019 were analyzed retrospectively. The assessment of the short WHODAS-2.0 was based on the first questionnaire completed by 881 patients. Confirmatory factor analysis evaluated previously validated models. Item convergent and discriminant validity as well as internal reliability were computed. Construct validity was assessed by comparing mean differences in accord with previous research regarding patients’ characteristics associated with functioning such as advanced age, diagnosed comorbidities, antipsychotic treatment status, and symptom severity measured with PANSS-8 remission items. Results: A heterogeneous sample was obtained in terms of age (range: 20–92), various living situations, and different geographic areas of birth. Most patients (75%) had been diagnosed with psychotic disorders more than 10 years ago and the majority (89%) were on antipsychotic medication. We confirmed an adjusted two-level factor model with a single second-order disability factor and six first-order factors representing the six IFC dimensions. The WHODAS-2.0 sum score measuring general disability showed good reliability (Cronbach's alpha = 0.89). Construct validity was confirmed as older patients, patients with comorbidities, and patients in assisted living had higher WHODAS-2.0 scores. Patients with no or mild psychotic symptoms had significantly lower WHODAS-2.0 sum scores than patients with more severe symptoms. Conclusions: The findings further validate the 12-item WHODAS-2.0 in a naturalistic sample of outpatients with psychotic disorders. This study corroborates the clinical significance of the short, 12-item WHODAS-2.0 by demonstrating consistent associations between patients’ age, medical comorbidities, living situation, antipsychotic treatment status, and psychotic symptom severity.

BACKGROUND: Co-production of health is defined as 'the interdependent work of users and professionals who are creating, designing, producing, delivering, assessing, and evaluating the relationships and actions that contribute to the health of individuals and populations'. It can assume many forms and include multiple stakeholders in pursuit of continuous improvement, as in Learning Health Systems (LHSs). There is increasing interest in how the LHS concept allows integration of different knowledge domains to support and achieve better health. Even if definitions of LHSs include engaging users and their family as active participants in aspects of enabling better health for individuals and populations, LHS descriptions emphasize technological solutions, such as the use of information systems. Fewer LHS texts address how interpersonal interactions contribute to the design and improvement of healthcare services.

OBJECTIVE: We examined the literature on LHS to clarify the role and contributions of co-production in LHS conceptualizations and applications.

METHOD: First, we undertook a scoping review of LHS conceptualizations. Second, we compared those conceptualizations to the characteristics of LHSs first described by the US Institute of Medicine. Third, we examined the LHS conceptualizations to assess how they bring four types of value co-creation in public services into play: co-production, co-design, co-construction and co-innovation. These were used to describe core ideas, as principles, to guide development.

RESULT: Among 17 identified LHS conceptualizations, 3 qualified as most comprehensive regarding fidelity to LHS characteristics and their use in multiple settings: (i) the Cincinnati Collaborative LHS Model, (ii) the Dartmouth Coproduction LHS Model and (iii) the Michigan Learning Cycle Model. These conceptualizations exhibit all four types of value co-creation, provide examples of how LHSs can harness co-production and are used to identify principles that can enhance value co-creation: (i) use a shared aim, (ii) navigate towards improved outcomes, (iii) tailor feedback with and for users, (iv) distribute leadership, (v) facilitate interactions, (vi) co-design services and (vii) support self-organization.

CONCLUSIONS: The LHS conceptualizations have common features and harness co-production to generate value for individual patients as well as for health systems. They facilitate learning and improvement by integrating supportive technologies into the sociotechnical systems that make up healthcare. Further research on LHS applications in real-world complex settings is needed to unpack how LHSs are grown through coproduction and other types of value co-creation.

Background: Projects to implement health care and social care innovations involving technologies are typically ambitious and complex. Many projects fail. Greenhalgh et al’s nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework was developed to analyze the varied outcomes of such projects.

Objective: We sought to extend the NASSS framework to produce practical tools for understanding, guiding, monitoring, and researching technology projects in health care or social care settings.

Methods: Building on NASSS and a complexity assessment tool (CAT), the NASSS-CAT tools were developed (in various formats) in seven co-design workshops involving 50 stakeholders (industry executives, technical designers, policymakers, managers, clinicians, and patients). Using action research, they were and are being tested prospectively on a sample of case studies selected for variety in conditions, technologies, settings, scope and scale, policy context, and project goals.

Results: The co-design process resulted in four tools, available as free downloads. NASSS-CAT SHORT is a taster to introduce the instrument and gauge interest. NASSS-CAT LONG is intended to support reflection, due diligence, and preliminary planning. It maps complexity through stakeholder discussion across six domains, using free-text open questions (designed to generate a rich narrative and surface uncertainties and interdependencies) and a closed-question checklist; this version includes an action planning section. NASSS-CAT PROJECT is a 35-item instrument for monitoring how subjective complexity in a technology implementation project changes over time. NASSS-CAT INTERVIEW is a set of prompts for conducting semistructured research or evaluation interviews. Preliminary data from empirical case studies suggest that the NASSS-CAT tools can potentially identify, but cannot always help reconcile, contradictions and conflicts that block projects’ progress.

Conclusions: The NASSS-CAT tools are a useful addition to existing implementation tools and frameworks. Further support of the implementation projects is ongoing. We are currently producing digital versions of the tools, and plan (subject to further funding) to establish an online community of practice for people interested in using and improving the tools, and hold workshops for building cross-project collaborations. International Registered Report Identifier (IRRID): DERR1-10.2196/16861