Why publish? An interview study exploring patient innovators' reasons for and experiences of scientific publishing.

BACKGROUND: Scientific publications featuring patient-driven innovations (i.e., innovations that are developed and driven by patients or informal caregivers) are increasing. By understanding patient innovators' experiences of research publication, the scientific community may be better prepared to support or partner with patient innovators. Thus, the aim of this study was to explore patient innovators' reasons for and experiences of authoring scientific publications about their innovations. METHODS: Qualitative semi-structured interviews were conducted with 15 international patient innovators from three continents who had published in scientific journals. Participants were identified through a scoping review on patient-driven innovations and snowball sampling. Interviews were conducted from June to October 2022 and the data was analyzed using the Framework Method. FINDINGS: Participants' reasons for publishing in scientific journals were to strengthen the roles and voices of patients and informal caregivers, and to get recognition for their innovations. Some published as a response to serendipitous opportunities. Several positive experiences were reported: collaborations defined by transparency, mutual respect, and meaningful participation; learning and competence development; and gained confidence regarding the value of lived experiences in research. Participants also reported negative experiences, such as cultural barriers manifested as conservatism in academia and power imbalances between participants and researchers, and structural barriers regarding academic affiliations and research funding. CONCLUSIONS: Despite progress in increasing patient and public involvement in research and publication, our study found that patient innovators still experience barriers. This suggests that continued efforts are needed to facilitate contributions from patient innovators and other public actors to the production of relevant and meaningful research.

Rapid technological advances over the past decades have resulted in many health innovations that enable persons living with chronic conditions to better manage their health conditions in self-care. Similarly, caregivers can provide more advanced informal care. Do-it-yourself health innovations, such as automatic insulin dosing for diabetes patients, have been developed by patients and informal caregivers whom we in this study defined as patient innovators. There is an increasing trend of research focusing on such patient-driven innovations. However, we know little about the driving forces of patient innovators to contribute to scientific publications about their innovations. Therefore, the aim of this study was to explore patient innovators' reasons for publishing and their experiences thereof. We interviewed 15 international patient innovators who had experience of scientific publishing. Their main driving forces were to make patients' voices heard and receive recognition for their innovations, which could facilitate spread to other patients. The patient innovators in our study had positive experiences and meaningful collaborations with researchers that contributed to developing their scientific skills. However, they also faced challenges, such as managing their health and professional occupations besides research, being questioned by peer reviewers, and difficulties tackling the research and publication system without academic affiliation or funding. Our findings suggest that despite strong driving forces and positive experiences of scientific publishing, patient innovators face barriers that need to be addressed to facilitate the publication process for contributors without academic experience.

Patients' and clinicians' views on the appropriate use of safety-netting advice in consultations-an interview study from Sweden.

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.

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review.

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.

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research.

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.

N-of-1 Analytics Makerspace: A Prototype for Cystic Fibrosis Self-Care and Co-Care.

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.

Mind the gap: analysis of two pilot projects of a home telehealth service for persons with complex conditions in a Swedish hospital.

BACKGROUND: Developing and implementing home telehealth (HTH) services for patients with chronic conditions is a challenge. HTH services provide continuous and integrated care to patients, but very often pilot projects face non-adoption and abandonment issues. Change processes in healthcare are often complex and require learning to adapt to non-linear and unpredictable events. Complexity science can thus provide a complementary view to the predominant Quality Improvement (QI) approach in healthcare. In this study of two pilot projects in a Swedish hospital, we explore how a theory-driven approach can be used (a) to support the development of a self-monitoring HTH service in hospital care and (b) to evaluate staff and patients' experiences from early adoption. METHODS: To plan and evaluate the service for the recipients (i.e., patients and healthcare providers), we used the Plan-Do-Study-Act (PDSA) tool in combination with two complexity-informed frameworks: the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, and the joint Complexity Assessment Tool (CAT). The theory-informed development process led to two pilot projects of an HTH service for patients with heart failure and COVID-19. We collected data from multiple sources (project documents, a survey on readiness for change among staff, and semi-structured interviews with patients and staff) and analyzed the data using descriptive statistics and qualitative content analysis with a deductive approach. RESULTS: Patients and staff perceived the services as valuable as they enabled rapid feedback, and improved communication and collaboration between patients and healthcare providers. Yet, despite the extensive development efforts, there was a perceived gap between how individuals valued the service and the capacity of adopters, the organization, and the wider system to effectively integrate these services into routine care. CONCLUSIONS: The combined use of PDSA, NASSS, and CAT can support the development and evaluation of HTH services that are perceived as valuable by individual patients and staff. For successful adoption, the value for individuals must be supported by organizational efforts to learn how to integrate new routines and tasks into clinical practice and daily life, and how to coordinate multiple providers within and outside the hospital walls.

Now What? Collective Sensemaking and Sensegiving in the Cystic Fibrosis Community in Sweden During the Initial Phase of the COVID-19 Pandemic.

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.

Better self-care through co-care? A latent profile analysis of primary care patients' experiences of e-health-supported chronic care management.

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.

Digital Health Technologies Enabling Partnerships in Chronic Care Management: Scoping Review.

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.

Patient-driven innovations reported in peer-reviewed journals: a scoping review.

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.

What matters to persons living with brain tumors and their informal caregivers? An interview study of qualities in interpersonal relations.

BACKGROUND: Brain tumor is a severe cancer that may make the person with the illness and their informal caregivers dependent on support in self-care. Social network mapping is a method to assess an individual's social relations and resources, which may help to identify high-quality relations and potential sources of support. Yet, which relations matter for individuals living with brain tumors and their informal caregivers and how social network mapping could be used in self-care need further investigation. AIM: To explore how persons living with brain tumors and informal caregivers perceive the potential usefulness of a social network-mapping tool in their self-care and to describe the qualities in the interpersonal relations that they map. METHODS: Seven persons living with brain tumors and 12 informal caregivers (whereof six bereaved) participated in in-depth interviews and tested a social network-mapping tool developed by an informal caregiver (CareMaps). Data were analyzed inductively using thematic analysis. The COREQ checklist was used for reporting. FINDINGS: Participants expressed positive opinions about the CareMaps tool but raised some questions regarding its design, how to use it in their self-care, and the optimal timing of introducing the tool. Two themes reflecting qualities in relations were found: self-care supportive relations during which daily management of the brain tumor is in focus and identity-preserving relations that allow individuals to disconnect from their brain tumor experiences. Both types of relations were described as important, were found in different contexts (e.g., social life, work life, and healthcare), and emphasized contrasting qualities. CONCLUSION: The CareMaps tool was helpful in elucidating qualities in interpersonal relations that contribute to individuals' self-care. Future research should investigate how social network-mapping tools that capture quality in social relations should be designed and used to support individuals in their self-care.

The work of having a chronic condition: development and psychometric evaluation of the distribution of co-care activities (DoCCA) scale.

BACKGROUND: Chronic care involves multiple activities that can be performed by individuals and healthcare staff as well as by other actors and artifacts, such as eHealth services. Thus, chronic care management can be viewed as a system where the individual interacts with people and eHealth services performing activities to maintain or improve health and functioning, called co-care. Yet, the system perspective is not reflected in concepts such as person-centered care and shared decision making. This limits the understanding of individuals' global experience of chronic care management and subsequently the ability to optimize chronic care. The aim of this study was threefold: (1) to propose a theory-based operationalization of co-care for chronic care management, (2) to develop a scale to measure co-care as a distributed system of activities, and (3) to evaluate the scale's psychometric properties. With the theory of distributed cognition as a theoretical underpinning, co-care was operationalized along three dimensions: experience of activities, needs support, and goal orientation. METHODS: Informed by the literature on patient experiences and work psychology, a scale denoted Distribution of Co-Care Activities (DoCCA) was developed with the three conceptualized dimensions, the activities dimension consisting of three sub-factors: demands, unnecessary tasks, and role clarity. It was tested with 113 primary care patients with chronic conditions in Sweden at two time points. RESULTS: A confirmatory factor analysis showed support for a second-order model with the three conceptualized dimensions, with activities further divided into the three sub-factors. Cronbach's alpha values indicated a good to excellent reliability of the subscales, and correlations across time points with panel data indicated satisfactory test-retest reliability. Convergent, concurrent and predictive validity of the scale were, overall, satisfactory. CONCLUSIONS: The psychometric evaluation supports a model consisting of activities (demands, unnecessary tasks, and role clarity), needs support and goal orientation that can be reliably measured with the DoCCA scale. The scale provides a way to assess chronic care management as a system, considering the perspective of the individuals with the chronic condition and how they perceive the work that must be done, across situations, either by themselves or through healthcare, eHealth, or other means.

Sharing Patient-Controlled Real-World Data Through the Application of the Theory of Commons: Action Research Case Study.

BACKGROUND: Technological 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. OBJECTIVE: This 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. METHODS: An 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. RESULTS: Through 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. CONCLUSIONS: Health 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.

Design and Development of an eHealth Service for Collaborative Self-Management among Older Adults with Chronic Diseases: A Theory-Driven User-Centered Approach.

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.

Digital tools as promoters for person-centered care practices in chronic care? Healthcare professionals' experiences from rheumatology care.

BACKGROUND: Person-centered care (PCC) emphasize the importance of supporting individuals' involvement in care provided and self-care. PCC has become more important in chronic care as the number of people living with chronic conditions is increasing due to the demographic changes. Digital tools have potential to support interaction between patients and healthcare providers, but empirical examples of how to achieve PCC in chronic care and the role of digital tools in this process is limited. The aim of this study was to investigate strategies to achieve PCC used by the healthcare professionals at an outpatient Rheumatology clinic (RC), the strategies' relation to digital tools, and the perceived impact of the strategies on healthcare professionals and patients. METHODS: A single case study design was used. The qualitative data consisted of 14 semi-structured interviews and staff meeting minutes, covering the time period 2017-2019. The data were analyzed using conventional content analysis, complemented with document analyses. RESULTS: Ten strategies on two levels to operationalize PCC, and three categories of perceived impact were identified. On the individual patient level strategies involved several digital tools focusing on flexible access to care, mutual information sharing and the distribution of initiatives, tasks, and responsibilities from provider to patients. On the unit level, strategies concerned involving patient representatives and individual patients in development of digital services and work practices. The roles of both professionals and patients were affected and the importance of behavioral and cultural change became clear. CONCLUSIONS: By providing an empirical example from chronic care the study contributes to the knowledge on strategies for achieving PCC, how digital tools and work practices interact, and how they can affect healthcare staff, patients and the unit. A conclusion is that the use of the digital tools, spanning over different dimensions of engagement, facilitated the healthcare professionals' interaction with patients and the patients' involvement in their own care. Digital tools complemented, rather than replaced, care practices.

How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study.

BACKGROUND: Worldwide, 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. OBJECTIVE: This 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. METHODS: Principles 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. RESULTS: The 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). CONCLUSIONS: This 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.

Satisfied or Frustrated? A Qualitative Analysis of Need Satisfying and Need Frustrating Experiences of Engaging With Digital Health Technology in Chronic Care.

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.

Enhanced Patient Activation in Cancer Care Transitions: Protocol for a Randomized Controlled Trial of a Tailored Electronic Health Intervention for Men With Prostate Cancer.

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.

Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges.

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.

Incidence of tuberculosis and the need of prophylactic treatment in persons living with HIV in Stockholm during the era of anti-retroviral therapy 1996-2013.

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.