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BackgroundTechnological advances have radically changed the opportunities for individuals with chronic conditions to practice self-care and to coproduce health care and research. Digital technologies enable patients to perform tasks traditionally carried out by health care professionals in a more convenient way, at lower costs, and without compromising quality. Patients may also share real-world data with other stakeholders to promote individual and population health. However, there is a need for legal frameworks that enable patient privacy and control in such sharing of real-world data. We believe that this need could be met by the conceptualization of patient-controlled real-world data as knowledge commons, which is a resource shared by a group of people. ObjectiveThis study aimed to propose a conceptual model that describes how patient-controlled real-world data can be shared effectively in chronic care management, in a way that supports individual and population health, while respecting personal data privacy and control. MethodsAn action research approach was used to develop a solution to enable patients, in a self-determined way, to share patient-controlled data to other settings. We chose the context of cystic fibrosis (CF) care in Sweden, where coproduction between patients, their families, and health care professionals is critical in the introduction of new drugs. The first author, who is a lawyer and parent of children with CF, was a driver in the change process. All coauthors collaborated in the analysis. We collected primary and secondary data reflecting changes during the time period from 2012 to 2020, and performed a qualitative content analysis guided by the knowledge commons framework. ResultsThrough a series of changes, a national system for enabling patients to share patient-controlled real-world data to different stakeholders in CF care was implemented. The case analysis resulted in a conceptual model consisting of the following three knowledge commons arenas that contributed to patient-controlled real-world data collection, use, and sharing: (1) patient world arena involving the private sphere of patients and families; (2) clinical microsystem arena involving the professional sphere at frontline health care clinics; and (3) round table arena involving multiple stakeholders from different settings. Based on the specification of property rights, as presented in our model, the patient can keep control over personal health information and may grant use rights to other stakeholders. ConclusionsHealth information exchanges for sharing patient-controlled real-world data are pivotal to enable patients, health care professionals, health care funders, researchers, authorities, and the industry to coproduce high-quality care and to introduce and follow-up novel health technologies. Our model proposes how technical and legal structures that protect the integrity and self-determination of patients can be implemented, which may be applicable in other chronic care settings as well.

BackgroundWorldwide, the number of people with Parkinson’s disease (PD) is predicted to double between the years 2005 and 2030. Chronic care management requires active collaboration and knowledge exchange between patients and health care professionals (HCPs) for best possible health outcomes, which we describe as co-care. eHealth services have the potential to support the realization of co-care between people with PD (PwP) and HCPs. ObjectiveThis study aimed to explore how co-care could be operationalized in PD care, supported by eHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth functionalities to achieve co-care. MethodsPrinciples of participatory design were used to enable the identification of co-care needs and design ideas, in a series of 4 half-day co-design workshops. The sample included 7 (4 women) PwP and 9 (4 women) HCPs, including 4 neurologists, 3 nurses, and 2 physiotherapists. The co-design process resulted in a functional prototype that was evaluated by the co-design participants in the last workshop. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshops. The data were analyzed using qualitative thematic analysis. After the workshop series, the prototype was demonstrated at a Mini Fair for ongoing PD research and evaluated using a self-developed questionnaire with 37 respondents: 31 PwP (14 women) and 6 informal caregivers (3 women). Descriptive statistics are reported. ResultsThe qualitative analysis of data resulted in 2 main themes. The first theme, core eHealth functionalities and their expected values, describes 6 desired eHealth functionalities for supporting PD co-care between PwP and HCPs: (1) self-tracking, (2) previsit forms, (3) graphical visualization, (4) clinical decision support, (5) self-care recommendations, and (6) asynchronous communication. The second theme, individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth service for co-care. Individual constraints include eHealth literacy and acceptance; organizational constraints include teamwork and administrative workload. The majority of the questionnaire respondents (31/37, 84%) perceived that they would benefit from an eHealth service similar to the demonstrated prototype. All prototype functionalities were rated as very important or important by the majority of respondents (ranging from 86% to 97% per functionality). ConclusionsThis study adds to our knowledge on how PD co-care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by the mutual needs of patients and HCPs and supported by active information exchange between them, as well as automated information processing to generate patient-specific advice. More research is needed to further explore the concept of co-care in chronic care management and what it means for self-care and health care. International Registered Report Identifier (IRRID)RR2-10.2196/11278

Background: Research indicates that successful co‐creation depends on a shared understanding of co‐creation and its related concepts. However, it also shows that, in practice, views on co‐creation and how to do it differ. This study aims to explore how patient innovators and researchers in a partnership research programme understand co‐creation and how this understanding changes over time. Methods: An explorative longitudinal qualitative study was conducted with the 'Patients in the Driver's Seat' partnership research programme. Fifty‐eight interviews were performed and analysed using a reflexive thematic approach. Findings: Four different ways of understanding co‐creation were identified. These can be instrumentally conceptualized as themes using the inputs‐process‐outputs model: (1) combining different perspectives, experiences and backgrounds (inputs); (2) deliberately dynamic and exploratory (process); (3) striving for equity, not equality (process); and (4) diverse value creation, tangible and intangible (outputs). Together, these themes represent the varied understandings of co‐creation among partnership programme members. Conclusions: Our study of patient innovators and researchers identified four distinct yet complementary understandings of co‐creation. The study suggests that co‐creation is the sum of its essential components, which can be divided into inputs, process, and outputs. Patient or Public Contribution: This study, and the partnership programme it explored, aims to improve the relevance of research for patients and informal caregivers through an improved understanding of the concept of co‐creation within research on patient innovation. All patient innovators involved in the programme were invited, as interviewees and researchers, to contribute to the study design and data analysis. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic's effects on people's lives and society induced a need for rapid individual and collective sensemaking, including communication forums enabling stakeholders in the health ecosystem to share information, solve problems, and learn. This study specifically focused on the needs of the patients and family caregivers living with cystic fibrosis (CF) or primary ciliary dyskinesia (PCD), conditions that lead to chronic infections and inflammation in the airways. We explored how CF and PCD patients, family caregivers, and clinicians collectively received, processed, and used information about COVID-19 to facilitate self-care and health care decisions at the beginning of the pandemic. We applied macrocognitive theory to analyze qualitatively the questions and answers exchanged in a series of six webinars facilitated by a CF learning network at the beginning of the pandemic (March – April 2020). We identified three macrocognitive functions: sensemaking, decision-making, and replanning. We further generated nine themes: (a) understanding the nature of COVID-19, (b) exploring self-care needs and possibilities, (c) understanding health care possibilities, (d) making decisions about prevention and testing, (e) managing COVID-19 within families, (f) adjusting planned care, (g) replanning chronic care management, (h) defining COVID-19 health care strategies, and (i) refining health care policies. The exchange of questions and answers played a central role in facilitating important cognitive processes, which enabled a rapid anticipation of needs and adaptation of services to support patients, family caregivers, and clinicians during the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Background: Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6‐year partnership research programme in Sweden, and (b) explores the hopes, expectations, and experiences of patient innovators (i.e., individuals with lived experience as patients or caregivers who drive health innovations) and researchers involved in the programme during the first years. Methods: We conducted a prospective longitudinal qualitative study spanning the first 2 years of the programme. Data consisted of meeting protocols and interviews with 14 researchers and 6 patient innovators; 39 interviews were carried out in three evenly‐spaced rounds. We identified significant events and discussion themes in the meeting protocols and analyzed the interviews using thematic analysis, applying a cross‐sectional recurrent approach to track changes over time. Findings: Meeting protocols revealed how several partnership practices (e.g., programme management team, task forces, role description document) were cocreated, supporting the sharing of power and responsibilities among programme members. Based on the analysis of interviews, we created three themes: (1) paving the path to a better tomorrow, reflecting programme members' high expectations; (2) going on a road trip together, reflecting experiences of finding new roles and learning how to cocreate; (3) finding the tempo: from talking to doing, reflecting experiences of managing challenges and becoming productive as a team. Conclusions: Our findings suggest that sharing, respecting, and acknowledging each other's experiences and concerns helps build mutual trust and shape partnership practices. High expectations beyond research productivity suggest that we need to consider outcomes at different levels, from the individual to society, when evaluating the impact of partnership research. Patient or Public Contribution: The research team included members with formal experiences as researchers and members with lived experiences of being a patient or informal caregiver. One patient innovator coauthored this paper and contributed to all aspects of the research, including the design of the study; production of data (as interviewee); interpretation of findings; and drafting the manuscript. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to identify key components of integrated mental health and social care services that contribute to value for service users in Sweden. Design/methodology/approach: An explorative research study design was used, based on data from four group interviews conducted in June and August 2017 with service user representatives. Findings: The analysis resulted in eight subcategories reflecting components that were reported to contribute to value for service users. These subcategories were grouped into three main categories: (1) professionals who see and support the whole person, (2) organizational commitment to holistic care and (3) support for equal opportunities and active participation in society. Research limitations/implications: The findings are primarily transferable to integrated mental health and social care services, as they emphasize key components that contribute to value for service users in these specific settings. Practical implications: The complexity of integrated mental health and social care services requires coordination across the individual and organizational levels as well as ongoing dialogue and partnerships between service users, service user associations and health and social care organizations. In this integration, it is important that service users and service user associations not only are invited but also keen to participate in the design of care and support efforts. Originality/value: Service User Associations (SUAs) can act as a bridge between county and municipal services through their participation in the development of local activities; at the regional and national levels, SUAs can help achieve more equitable integrated services. It is important that SUAs are not only invited but encouraged to actively participate in the design of such care and support efforts. [ABSTRACT FROM AUTHOR]

We have designed a prototype N-of-1 analytics makerspace, which is a collaborative work environment that provides a space for different stakeholders in healthcare to learn new skills and work together on projects that can improve individual patient care and the effectiveness of healthcare systems. Our prototype was designed to study the use of antibiotics in self-management for children with cystic fibrosis in Sweden but is intended to be disease agnostic and potentially include other complex medical conditions in the future. [ABSTRACT FROM AUTHOR]

Background: The aim of this observational cohort study was to determine the incidence and risk factors of active tuberculosis (TB) in persons living with HIV in a low endemic setting over a 17-year time period when combination antiretroviral therapy (ART) has been available. We thereby aimed to understand the usefulness of TB chemoprophylaxis among HIV patients with latent TB. Methods: All 2127 adult patients diagnosed with HIV January 1996-December 2013 at the Karolinska University Hospital in Stockholm County were eligible. After exclusion of 259 patients transferred to other clinics, 1868 were followed until TB diagnosis, death or end of study period (December 2013). The median follow-up time was 7.9 years (interquartile range, 3.9-11.5). Results: Active TB was diagnosed in 92 patients, corresponding to an incidence rate of 6.2 cases (95% CI 5.1-7.6) per 1000 person-years with a significant decline over time. The majority (52%) of TB cases were diagnosed within 1 month from HIV diagnosis. Being a migrant from a TB-endemic region, was the only patient characteristic associated with significantly higher risk of active TB (Hazard Ration, HR: 8.54, 95% confidence interval, CI: 3.09-23.61 in a multivariate regression analysis controlling for route of HIV transmission, year of HIV diagnosis and CD4-cell count and viral load at HIV diagnosis. The number needed to treat to prevent one case of TB among patients in this high-risk group was 22 (95% CI 26-47). Conclusion: The incidence of active TB in persons living with HIV in Stockholm County declined significantly after the introduction of ART but was still 80 times higher than in the general population at the end of the study period. The therapeutic gain of chemoprophylaxis in low endemic settings should be weighed against costs and side effects. [ABSTRACT FROM AUTHOR]

In previous research we have learned that patients with chronic or complex diseases often experience difficulties when transitioning from hospital care to self-care in their home. We address these difficulties by developing an eHealth tool for patients - ePATH (electronic Patient Activation in Treatment at Home) - intended to empower each patient to manage their individual situation. We have employed a user-centered design process involving both patients and healthcare personnel to specify the content and functionality of ePATH. The system is deployed as a web application with secure login for patients. In this article, we describe the main content and functionality of the system that makes it possible for a patient to manage symptoms development in relation to treatment progression Interactive functionality, e.g., reminders and social support, is included to make the ePATH a useful and informative bridge between patients, next-of-kin and different caregivers. One lesson learned is that it is necessary to incorporate motivational components in the development of an eHealth tool to successfully overcome the "intention-behavior" gap. The self-determination theory of motivation can be used to ensure that important aspects are not missed. [ABSTRACT FROM AUTHOR]

Background: The care of HIV-related tuberculosis (HIV/TB) is complex and challenging. Clinical decision support (CDS) systems can contribute to improve quality of care, but more knowledge is needed on factors determining user acceptance of CDS.Objectives: To analyze physicians' and nurses' acceptance of a CDS prototype for evidence-based drug therapy recommendations for HIV/TB treatment.Methods: Physicians and nurses were involved in designing a CDS prototype intended for future integration with the Swedish national HIV quality registry. Focus group evaluation was performed with ten nurses and four physicians, respectively. The Unified Theory of Acceptance and Use of Technology (UTAUT) was used to analyze acceptance.Results: We identified several potential benefits with the CDS prototype as well as some concerns that could be addressed by redesign. There was also concern about dependence on physician attitudes, as well as technical, organizational, and legal issues.Conclusions: Acceptance evaluation at a prototype stage provided rich data to improve the future design of a CDS prototype. Apart from design and development efforts, substantial organizational efforts are needed to enable the implementation and maintenance of a future CDS system. [ABSTRACT FROM AUTHOR]

Background: An increasing number of patients expect and want to play a greater role in their treatment and care decisions. This emphasizes the need to adopt collaborative health care practices, which implies collaboration among interprofessional health care teams and patients, their families, caregivers, and communities. In recent years, digital health technologies that support self-care and collaboration between the community and health care providers (ie, participatory health technologies) have received increasing attention. However, knowledge regarding the features of such technologies that support effective patient-professional partnerships is still limited. Objective: This study aimed to map and assess published studies on participatory health technologies intended to support partnerships among patients, caregivers, and health care professionals in chronic care, focusing specifically on identifying the main features of these technologies. Methods: A scoping review covering scientific publications in English between January 2008 and December 2020 was performed. We searched PubMed and Web of Science databases. Peer-reviewed qualitative, quantitative, and mixed methods studies that evaluated digital health technologies for patient-professional partnerships in chronic care settings were included. The data were charted and analyzed thematically. The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist was used. Results: This review included 32 studies, reported in 34 papers. The topic of participatory health technologies experienced a slightly increasing trend across publication years, with most papers originating from the United States and Norway. Diabetes and cardiovascular diseases were the most common conditions addressed. Of the 32 studies, 12 (38%) evaluated the influence of participatory health technologies on partnerships, mostly with positive outcomes, although we also identified how partnership relationships and the nature of collaborative work could be challenged when the roles and expectations between users were unclear. Six common features of participatory health technologies were identified: patient-professional communication, self-monitoring, tailored self-care support, self-care education, care planning, and community forums for peer-to-peer interactions. Conclusions: Our findings emphasize the importance of clarifying mutual expectations and carefully considering the implications that the introduction of participatory health technologies may have on the work of patients and health care professionals, both individually and in collaboration. A knowledge gap remains regarding the use of participatory health technologies to effectively support patient-professional partnerships in chronic care management. J Med Internet Res 2022;24(8):e38980 doi:10.2196/38980 [ABSTRACT FROM AUTHOR]

Background: The treatment of patients co-infected with human immunodeficiency virus (HIV) and tuberculosis (TB) is challenging. The aim of this study was to compare socio-demographic and clinical characteristics among HIV-infected patients before and after the introduction of combined antiretroviral therapy (cART) in a Swedish cohort, and to identify factors associated with anti-TB treatment success as well as adverse reactions. Methods: This was a retrospective observational study of HIV/TB co-infected patients in Stockholm County from 1987 to 2010. The study population was stratified into an early and a late cohort (before and after the introduction of cART in 1996). Data were analyzed using descriptive statistics and multiple logistic regression analysis. Results: The study population comprised 127 patients; the majority were foreign-born (87%). The proportion of female patients more than doubled from the early to the late cohort, and anti-TB treatment success increased from 65% to 91%. The median duration of successful treatment was 8 months in both cohorts. Predictors of treatment success in the late cohort were cART (odds ratio (OR) 13.3, 95% confidence interval (CI) 1.5-114.8) and a CD4 cell count at TB diagnosis > 200 cells/μl (OR 17.2, 95% CI 1.2-236.6). Severe adverse reactions in the late cohort occurred in 23% and were associated with the initiation of cART after TB diagnosis (OR 13.3, 95% CI 1.6-112.4). Conclusion: The introduction of cART was favourable for the treatment outcome of HIV-infected patients with concomitant TB. However, adverse reactions increased in patients who initiated cART during anti-TB treatment and these patients require careful attention. [ABSTRACT FROM AUTHOR]

Background: Social relationships (i.e.interpersonal relations with individuals or groups) have been shown to have long- and short-term effects on health outcomes including reduced mortality risk and quality of life among cancer patients. Patients with tumors in the central nervous system (CNS) often suffer cognitive, neuropsychological and functional impairments, causing major support needs among this patient group and their loved ones caring for them, here referred to as informal caregivers. Informal caregiving can be a positive experience, but it may also have negative psychosocial and physical implications for the caregiver. Further, the quality of social relations among cancer patients and their informal caregivers may decrease over time as illness progresses. The Swedish Brain Tumor Association has started an initiative whereby patients and their informal caregivers introduced to drawing so-called caremaps, social network diagrams visualizing both their formal and informal relations. The hypothesis is that caremaps can support communication and coordination, and may even contribute to strengthening social relations. The aim of this study is 1) to explore what type of social relations and resources are important for CNS tumor patients and their informal caregivers and 2) to explore how they reason about the potential benefits and risks of using caremaps to map and possibly share their social relations. Methods: Setting: During the fall of 2018 and early spring 2019 patients and informal caregivers who have been introduced to Caremaps through the Swedish Brain Tumor Association will be invited to participate in focus group discussions or individual interviews to reflect on their social support needs and their impressions of the Caremaps tool. We estimate to involve approximately 10-20 participants. Results: We expect to be able to present our preliminary findings from the workshops, interviews and focus group discussions at the ICIC 2019 conference, highlighting experienced needs and challenges, as well as first impressions of using caremaps. Discussion: An increasing incidence and prevalence of CNS tumor patients calls for innovative solutions to secure adequate care and support for both the patients and their informal caregivers. Identifying an individual's informal and formal care resources may provide a context in which to navigate among the existing and potential support. It may also serve to facilitate the assessment and appreciation of patients' dependence on informal care as well as of caregiver burden and thus caregivers' support needs. Contribution: Our findings will contribute with insights about how social relationships can be mapped and supported and how caremaps can be a tool for CNS tumor patients and their informal caregivers in self-management, which has implications for designing services to enhance patient and informal caregiver self-care and well-being. This research project is conducted in collaboration with the Swedish brain tumor patient association, Karolinska Institutet, Karolinska University Hospital and the Regional Cancer Center Stockholm-Gotland. [ABSTRACT FROM AUTHOR]

Chronic care management is dependent on productive interactions between patients and healthcare professionals. Digital health technologies (eHealth) open up new possibilities for improving the quality of care, but there is a limited understanding of what productive interactions entail. This study explores characteristics of productive interactions to support self-care and healthcare in the context of eHealth use in diabetes care. We collected qualitative data based on interviews with nurses and responses to open-ended survey questions from patients, prior to and post using an eHealth service for self-monitoring and digital communication. We found that eHealth's influence on productive interactions was characterized by unconstrained access, health parameter surveillance, and data-driven feedback, with implications for self-care and healthcare. Our findings indicate that eHealth perforates the boundaries that define interactions under traditional, non-digital care. This was manifested in expressions of uncertainty and in blurred boundaries between self-care and healthcare. We conclude that the attainment of a sustainable eHealth ecosystem will require healthcare to acknowledge eHealth as a disruptive change that may require re-organization to optimally support the productive use of eHealth services for both patients and staff, which includes agreement on new routines, as well as social interaction rules. [ABSTRACT FROM AUTHOR]

Background: Knowledge and understanding remains poor regarding what optimally integrated mental-health and social care services entail from the service users' perspective, but this knowledge is important in the development of services. Aim: To identify key components of integrated mental-health and social care services that contribute to value for service users in Sweden. Method: An explorative research study design was used, based on data from four group interviews with service-user representatives. Results: The analysis resulted in eight subcategories reflecting components that were reported to contribute to value for service users. These subcategories were grouped into three main categories: 1) professionals who see and support the whole person, 2) organizational commitment to holistic care and 3) support for equal opportunities and active participation in society. Conclusion: The complexity of integrated mental-health and social care services requires coordination across the individual and organizational levels as well as ongoing dialogue and partnerships between service users, service-user associations, and health and social care organizations. In this integration, it is important that service users and service-user associations not only are invited but actively participate in the design of care and support efforts. [ABSTRACT FROM AUTHOR]

Background: The need for services to support patient self-care and patient education has been emphasized for patients with chronic conditions. People with chronic conditions may spend many hours per year in health and social care services, but the majority of time is spent in self-care. This has implications in how health care is best organized. The term co-care specifically stresses the combination of health care professionals' and patients' resources, supported by appropriate (digital) tools for information exchange, to achieve the best possible health outcomes for patients. Developers of electronic health (eHealth) services need to consider both parties' specific needs for the service to be successful. Research on participants' experiences of participating in co-design sessions is scarce. Objective: The aim of this study was to describe different stakeholders' (people with chronic conditions, health care professionals, and facilitators) overall experiences of participating in co-design workshops aimed at designing an eHealth service for co-care for Parkinson disease, with a particular focus on the perceptions of values and challenges of co-design as well as improvement suggestions. Methods: We conducted 4 half-day co-design workshops with 7 people with Parkinson disease and 9 health care professionals. Data were collected during the workshop series using formative evaluations with participants and facilitators after each workshop, researchers' diary notes throughout the co-design process, and a Web-based questionnaire after the final workshop. Quantitative data from the questionnaire were analyzed using descriptive statistics. Qualitative data were triangulated and analyzed inductively using qualitative content analysis. Results: Quantitative ratings showed that most participants had a positive general experience of the co-design workshops. Qualitative analysis resulted in 6 categories and 30 subcategories describing respondents' perceptions of the values and challenges of co-design and their improvement suggestions. The categories concerned (1) desire for more stakeholder variation; (2) imbalance in the collaboration between stakeholders; (3) time investment and commitment paradox; (4) desire for both flexibility and guidance; (5) relevant workshop content, but concerns about goal achievement; and (6) hopes and doubts about future care. Conclusions: Based on the identified values and challenges, some paradoxical experiences were revealed, including (1) a desire to involve more stakeholders in co-design, while preferring to work in separate groups; (2) a desire for more preparation and discussions, while the required time investment was a concern; and (3) the experience that co-design is valuable for improving care, while there are doubts about the realization of co-care in practice. The value of co-design is not mainly about creating new services; it is about improving current practices to shape better care. The choice of methods needs to be adjusted to the stakeholder group and context, which will influence how they experience the process and outcomes of co-design. [ABSTRACT FROM AUTHOR]

Objectives: To codesign safety-netting strategies for primary and emergency care settings by integrating the experiences and ideas of patients, carers and clinicians., Design: A codesign process involving two focus group discussions, eight individual interviews and five workshops. All sessions were audio recorded and transcribed verbatim. Data were analysed using qualitative content analysis and reported using the Consolidated criteria for Reporting Qualitative research guidelines., Setting: Primary and emergency care in Sweden, focusing on the Stockholm region., Participants: 7 (5 women) individuals with patient expertise, 1 (man) individual with carer expertise, 18 (12 women) individuals with clinical expertise., Results: Three main categories reflecting strategies for applying safety-netting were developed: first, conveying safety-netting advice , which involves understanding patient concerns, tailoring communication and using appropriate modalities for communicating; second, ensuring common understanding, which involves summarising information, asking a teach-back question and anticipating questions post consultation; and third, supporting safety-netting behaviour, which involves facilitating reconsultation, helping patients and carers to navigate the health system and explaining the care context and its purpose., Conclusions: Our study highlights the collaborative nature of safety-netting, engaging both the clinician and patient, sometimes supported by carers, in an iterative process. Adding to previous research, our study also emphasises the importance of anticipating postconsultation inquiries and facilitating reconsultation., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Patient-driven innovation in health care is an emerging phenomenon with benefits for patients with chronic conditions, such as cystic fibrosis (CF). However, previous research has not examined what may facilitate or hinder the implementation of such innovations from the provider perspective., Objective: The aim of this study was to explain variations in the adoption of a patient-driven innovation among CF clinics., Methods: A comparative multiple-case study was conducted on the adoption of a patient-controlled app to support self-management and collaboration with health care professionals (HCPs). Data collection and analysis were guided by the nonadoption, abandonment, spread, scale-up, and sustainability and complexity assessment tool (NASSS-CAT) framework. Data included user activity levels of patients and qualitative interviews with staff at 9 clinics (n=8, 88.9%, in Sweden; n=1, 11.1%, in the United States). We calculated the maximum and mean percentage of active users at each clinic and performed statistical process control (SPC) analysis to explore how the user activity level changed over time. Qualitative data were subjected to content analysis and complexity analysis and used to generate process maps. All data were then triangulated in a cross-case analysis., Results: We found no evidence of nonadoption or clear abandonment of the app. Distinct patterns of innovation adoption were discernable based on the maximum end-user activity for each clinic, which we labeled as low (16%-23%), middle (25%-47%), or high (58%-95%) adoption. SPC charts illustrated that the introduction of new app features and research-related activity had a positive influence on user activity levels. Variation in adoption was associated with providers' perceptions of care process complexity. A higher perceived complexity of the value proposition, adopter system, and organization was associated with lower adoption. In clinics that adopted the innovation early or those that relied on champions, user activity tended to plateau or decline, suggesting a negative impact on sustainability., Conclusions: For patient-driven innovations to be adopted and sustained in health care, understanding patient-provider interdependency and providers' perspectives on what generates value is essential., (©Pamela Mazzocato, Jamie Linnea Luckhaus, Moa Malmqvist Castillo, Johan Burnett, Andreas Hager, Gabriela Oates, Carolina Wannheden, Carl Savage. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 31.07.2024.)

Background: A promising approach to manage clinical uncertainty and thereby reduce the risk of preventable diagnostic harm is to use safety-netting advice (ie, communicating structured information to patients about when and where to reconsult healthcare)., Aim: To explore clinicians' and patients' views on when and how safety-netting can be successfully applied in primary-care and emergency-care settings., Design and Setting: An exploratory qualitative research design; we performed focus groups and interviews in a Swedish setting., Participants: Nine physicians working in primary or emergency care and eight patients or caregivers participated. The participants were an ethnically homogeneous group, originating from Western European or Australian backgrounds., Method: Data were analysed inductively, using the framework method. The results are reported according to the Standards for Reporting Qualitative Research guidelines for reporting qualitative research., Results: In order to manage diagnostic uncertainty using safety-netting, clinicians and patients emphasised the need to understand the preconditions for the consultation (ie, the healthcare setting, the patient's capacity and existing power imbalance). Furthermore, participants raised the importance of establishing a mutual understanding regarding the patient's perspective and the severity of the situation before engaging in safety-netting advice., Conclusion: The establishment of a shared mental model between clinician and patient of the preconditions for the clinical encounter is a vital factor affecting how safety-netting advice is communicated and received and its ability to support patients in problem detection and planning after the visit. We suggest that successful safety-netting can be viewed as a team activity, where the clinician and patient collaborate in monitoring how the patient's condition progresses after the care visit. Furthermore, our findings suggest that to be successfully implemented, safety-netting advice needs to be tailored to the clinical context in general and to the patient-clinician encounter in particular., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: The aim of this study was to gain a deeper understanding of the objectives and outcomes of patient-driven innovations that have been published in the scientific literature, focusing on (A) the unmet needs that patient-driven innovations address and (B) the outcomes for patients and healthcare that have been reported., Methods: We performed an inductive qualitative content analysis of scientific publications that were included in a scoping review of patient-driven innovations, previously published by our research group. The review was limited to English language publications in peer-reviewed journals, published in the years 2008-2020., Results: In total, 83 publications covering 21 patient-driven innovations were included in the analysis. Most of the innovations were developed for use on an individual or community level without healthcare involvement. We created three categories of unmet needs that were addressed by these innovations: access to self-care support tools, open sharing of information and knowledge, and patient agency in self-care and healthcare decisions. Eighteen (22%) publications reported outcomes of patient-driven innovations. We created two categories of outcomes: impact on self-care, and impact on peer interaction and healthcare collaboration., Conclusions: The patient-driven innovations illustrated a diversity of innovative approaches to facilitate patients' and informal caregivers' daily lives, interactions with peers and collaborations with healthcare. As our findings indicate, patients and informal caregivers are central stakeholders in driving healthcare development and research forward to meet the needs that matter to patients and informal caregivers. However, only few studies reported on outcomes of patient-driven innovations. To support wider implementation, more evaluation studies are needed, as well as research into regulatory approval processes, dissemination and governance of patient-driven innovations., Competing Interests: Competing interests: SR who coauthored this paper as a patient innovator and researcher is also an author of one of the publications that was included in the analysis., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Efficient self-care of chronic conditions requires that an individual's resources be optimally combined with healthcare's resources, sometimes supported by e-health services (i.e., co-care). This calls for a system perspective of self-care to determine to what extent it involves demanding or unnecessary tasks and whether role clarity, needs support, and goal orientation are sufficient. This study aims to explore typical configurations of how the co-care system is experienced by individuals with chronic conditions who used an e-health service supporting self-monitoring and digital communication with primary care., Method: We performed a latent profile analysis using questionnaire data from two waves (7 months apart) involving 180 of 308 eligible patients who pilot-tested an e-health service for co-care at a Swedish primary care center. The five subscales of the Distribution of Co-Care Activities (DoCCA) scale were used to create profiles at Time 1 (T1) and Time 2 (T2). Profiles were described based on sociodemographic variables (age, gender, education level, and health condition) and compared based on exogenous variables (self-rated health, satisfaction with healthcare, self-efficacy in self-care, and perceptions of the e-health service)., Results: We identified four typical configurations of co-care experiences at T1: strained, neutral, supportive, and optimal. Patients with optimal and supportive profiles had higher self-rated health, self-efficacy in self-care, and satisfaction with healthcare than patients with strained and neutral profiles. Slightly more than half transitioned to a similar or more positive profile at T2, for which we identified five profiles: unsupportive, strained, neutral, supportive, and optimal. Patients with optimal and supportive profiles at T2 had higher self-efficacy in self-care and satisfaction with healthcare than the other profiles. The optimal profiles also had higher self-rated health than all other profiles. Members of the optimal and supportive profiles perceived the effectiveness of the e-health service as more positive than the unsupportive and strained profile members., Discussion: Primary care patients' co-care profiles were primarily distinguished by their experiences of needs support, goal orientation, and role clarity. Patients with more positive co-care experiences also reported higher self-rated health, self-efficacy in self-care, and satisfaction with healthcare, as well as more positive experiences of the e-health service., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Wannheden, Roczniewska, Hasson, Karlgren and von Thiele Schwarz.)

Background: Awareness of patients' innovative capabilities is increasing, but there is limited knowledge regarding the extent and nature of patient-driven innovations in the peer-reviewed literature., Objectives: The objective of the review was to answer the question: what is the nature and extent of patient-driven innovations published in peer-reviewed scientific journals?, Eligibility Criteria: We used a broad definition of innovation to allow for a comprehensive review of different types of innovations and a narrow definition of 'patient driven' to focus on the role of patients and/or family caregivers. The search was limited to years 2008-2020., Sources of Evidence: Four electronic databases (Medline (Ovid), Web of Science Core Collection, PsycINFO (Ovid) and Cinahl (Ebsco)) were searched in December 2020 for publications describing patient-driven innovations and complemented with snowball strategies., Charting Methods: Data from the included articles were extracted and categorised inductively., Results: A total of 96 articles on 20 patient-driven innovations were included. The number of publications increased over time, with 69% of the articles published between 2016 and 2020. Author affiliations were exclusively in high income countries with 56% of first authors in North America and 36% in European countries. Among the 20 innovations reported, 'Do-It-Yourself Artificial Pancreas System' and the online health network 'PatientsLikeMe', were the subject of half of the articles., Conclusions: Peer-reviewed publications on patient-driven innovations are increasing and we see an important opportunity for researchers and clinicians to support patient innovators' research while being mindful of taking over the work of the innovators themselves., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

The increasing prevalence of chronic conditions and multimorbidity poses great challenges to healthcare systems. As patients' engagement in self-managing their chronic conditions becomes increasingly important, eHealth interventions are a promising resource for the provision of adequate and timely support. However, there is inconclusive evidence about how to design eHealth services to meet the complex needs of patients. This study applied an evidence-based and theory-informed user-centered design approach in three phases to identify the needs of older adults and healthcare professionals in the collaborative management of multimorbidity (phase 1), develop an eHealth service to address these needs (phase 2), and test the feasibility and acceptance of the eHealth service in a clinical setting (phase 3). Twenty-two user needs were identified and a web-based application-ePATH (electronic Patient Activation in Treatment at Home)-with separate user interfaces for patients and healthcare professionals was developed. The feasibility study with two nurses and five patients led to a redesign and highlighted the importance of adequately addressing not only varying user needs but also the complex nature of healthcare organizations when implementing new services and processes in chronic care management.

Introduction: Digital health technologies such as self-monitoring devices and apps are becoming increasingly important as tools to promote healthy habits and support individuals in their self-care. There is still a scarcity of research that builds on motivational theory to better understand the functioning of digital health technologies. The self-determination theory (SDT) is a macro theory of motivation that delineates three basic psychological needs that are linked to different types of motivation and lead to well-being when satisfied and illbeing when frustrated. Objective: To explore how the use of a digital tool for self-monitoring and communication with healthcare satisfies or frustrates basic psychological needs across four spheres of user experience: interface, task, behavior, and life. Methods: The study was conducted in a Swedish primary care setting with individuals who participated in a pilot study of a digital health intervention for self-monitoring in chronic care management. Data from a follow-up survey with participants 7 months after recruitment were analyzed using a thematic approach mixing inductive and deductive analysis. The unit of analysis is based on a total of 642 individual answers to seven open-ended questions, from 121 respondents. Results: The analysis identified positive and negative influences of self-monitoring and digital communication with healthcare on all three psychological needs. Three main findings are that: (1) data covered all four spheres of user experiences, but most user experiences concerned the behavior and task spheres; (2) satisfaction and frustration of competence needs was more prominent than influences on other needs; (3) the same experience may be perceived as both need frustrating and need satisfying, which suggests a tension that reflects individual differences. Conclusion: Designers of digital health technologies need to take into account basic psychological needs within all spheres of user experience, from interface to life in general. Because some features may be simultaneously experienced as satisfying and frustrating by different users, these types of tools need to be flexible to accommodate for variation of user experiences. Careful design considerations that take motivational theory into account would contribute to the transformation of care for individuals with chronic conditions., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 Wannheden, Stenfors, Stenling and von Thiele Schwarz.)

Background: Prostate cancer has increased in incidence worldwide and is the leading cause of cancer death in 24 countries. The most common treatment is radical prostatectomy. However, surgery is associated with postoperative complications such as urinary incontinence and sexual dysfunction, causing decreased quality of life. If survivors are encouraged to be more active in self-care management, the symptom burden may decrease and quality of life may improve. An electronic health (eHealth) intervention based on motivational behavioral theory has been developed for this purpose., Objective: This study aimed to compare the effectiveness of standard care in combination with a tailored eHealth and mobile health self-management support system, electronic Patient Activation in Treatment at Home (ePATH), with standard care of adverse effects of prostate cancer treatment (urinary incontinence and sexual functioning) in men undergoing radical prostatectomy. The secondary aim was to test the effect on patient activaftion, motivation, overall well-being, and health literacy over time in and between groups., Methods: A pragmatic multicenter, block-randomized controlled trial with 2 study arms, standard care (control) and eHealth-assisted standard care (intervention), for patients undergoing radical prostatectomy. For 80% power, a sample of 242 men will need to be recruited., Results: Recruitment started in January 2018 and is expected to be completed by August 2019. Data collection will be completed in August 2020. The first cross-sectional results from this trial are anticipated to be published in January 2020., Conclusions: With the increasing number of prostate cancer survivors, attention should be paid to rehabilitation, psychosocial care, and support for endurance of self-care to reduce suffering from adverse treatment effects, poor quality of life, and depression because of postoperative complications. This project may increase knowledge of how patients can be supported to feel involved in their care and returning to as normal a life as possible. The anticipated effects of ePATH could improve health outcomes for individuals and facilitate follow-up for health care professionals., Trial Registration: International Standard Randomised Controlled Trial Number: 18055968; http://www.isrctn.com/ISRCTN18055968 (Archived by WebCite at http://www.isrctn.com/ISRCTN18055968)., International Registered Report Identifier (irrid): DERR1-10.2196/11625., (©Mirjam Ekstedt, Kristina Schildmeijer, Camilla Wennerberg, Lina Nilsson, Carolina Wannheden, Amanda Hellström. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 22.03.2019.)

Background: The need for services to support patient self-care and patient education has been emphasized for patients with chronic conditions. People with chronic conditions may spend many hours per year in health and social care services, but the majority of time is spent in self-care. This has implications in how health care is best organized. The term co-care specifically stresses the combination of health care professionals' and patients' resources, supported by appropriate (digital) tools for information exchange, to achieve the best possible health outcomes for patients. Developers of electronic health (eHealth) services need to consider both parties' specific needs for the service to be successful. Research on participants' experiences of participating in co-design sessions is scarce., Objective: The aim of this study was to describe different stakeholders' (people with chronic conditions, health care professionals, and facilitators) overall experiences of participating in co-design workshops aimed at designing an eHealth service for co-care for Parkinson disease, with a particular focus on the perceptions of values and challenges of co-design as well as improvement suggestions., Methods: We conducted 4 half-day co-design workshops with 7 people with Parkinson disease and 9 health care professionals. Data were collected during the workshop series using formative evaluations with participants and facilitators after each workshop, researchers' diary notes throughout the co-design process, and a Web-based questionnaire after the final workshop. Quantitative data from the questionnaire were analyzed using descriptive statistics. Qualitative data were triangulated and analyzed inductively using qualitative content analysis., Results: Quantitative ratings showed that most participants had a positive general experience of the co-design workshops. Qualitative analysis resulted in 6 categories and 30 subcategories describing respondents' perceptions of the values and challenges of co-design and their improvement suggestions. The categories concerned (1) desire for more stakeholder variation; (2) imbalance in the collaboration between stakeholders; (3) time investment and commitment paradox; (4) desire for both flexibility and guidance; (5) relevant workshop content, but concerns about goal achievement; and (6) hopes and doubts about future care., Conclusions: Based on the identified values and challenges, some paradoxical experiences were revealed, including (1) a desire to involve more stakeholders in co-design, while preferring to work in separate groups; (2) a desire for more preparation and discussions, while the required time investment was a concern; and (3) the experience that co-design is valuable for improving care, while there are doubts about the realization of co-care in practice. The value of co-design is not mainly about creating new services; it is about improving current practices to shape better care. The choice of methods needs to be adjusted to the stakeholder group and context, which will influence how they experience the process and outcomes of co-design., (©Åsa Revenäs, Helena Hvitfeldt Forsberg, Emma Granström, Carolina Wannheden. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 30.10.2018.)