Patients are doing it for themselves: A survey on disease-specific knowledge acquisition among people with Parkinson's disease in Sweden.

Effective self-management is key to living well with Parkinson's disease and one important aspect is disease-specific knowledge. This article explores how people with Parkinson's disease in Sweden (1) acquire disease-specific knowledge and (2) use Parkinson's disease-related healthcare. Data were collected through an online survey, which had 346 respondents (16-87 years old, median age: 68 years, 51% male; time since diagnosis: 0-31 years, median time: 7 years). Our results show that disease-specific knowledge is mainly found online, especially for women with Parkinson's disease and people with Parkinson's disease of working age, that most people with Parkinson's disease in Sweden see their neurologist for 1 h or less per year and only one in two people with Parkinson's disease has regular contact with other Parkinson's disease-related healthcare professionals. We also find that people with Parkinson's disease reporting higher levels of specific knowledge also are more likely to be satisfied with the amount of time they get with their neurologist, regardless of the amount of time.

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.

Staffs' and managers' perceptions of how and when discrete event simulation modelling can be used as a decision support in quality improvement: a focus group discussion study at two hospital settings in Sweden.

OBJECTIVE: To explore healthcare staffs' and managers' perceptions of how and when discrete event simulation modelling can be used as a decision support in improvement efforts. DESIGN: Two focus group discussions were performed. SETTING: Two settings were included: a rheumatology department and an orthopaedic section both situated in Sweden. PARTICIPANTS: Healthcare staff and managers (n=13) from the two settings. INTERVENTIONS: Two workshops were performed, one at each setting. Workshops were initiated by a short introduction to simulation modelling. Results from the respective simulation model were then presented and discussed in the following focus group discussion. RESULTS: Categories from the content analysis are presented according to the following research questions: how and when simulation modelling can assist healthcare improvement? Regarding how, the participants mentioned that simulation modelling could act as a tool for support and a way to visualise problems, potential solutions and their effects. Regarding when, simulation modelling could be used both locally and by management, as well as a pedagogical tool to develop and test innovative ideas and to involve everyone in the improvement work. CONCLUSIONS: Its potential as an information and communication tool and as an instrument for pedagogic work within healthcare improvement render a broader application and value of simulation modelling than previously reported.

Boosting Quality Registries with Clinical Decision Support Functionality*. User Acceptance of a Prototype Applied to HIV/TB Drug Therapy.

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.

Operational strategies to manage non-elective orthopaedic surgical flows: a simulation modelling study.

OBJECTIVES: To explore the value of simulation modelling in evaluating the effects of strategies to plan and schedule operating room (OR) resources aimed at reducing time to surgery for non-elective orthopaedic inpatients at a Swedish hospital. METHODS: We applied discrete-event simulation modelling. The model was populated with real world data from a university hospital with a strong focus on reducing waiting time to surgery for patients with hip fracture. The system modelled concerned two patient groups that share the same OR resources: hip-fracture and other non-elective orthopaedic patients in need of surgical treatment. We simulated three scenarios based on the literature and interaction with staff and managers: (1) baseline; (2) reduced turnover time between surgeries by 20 min and (3) one extra OR during the day, Monday to Friday. The outcome variables were waiting time to surgery and the percentage of patients who waited longer than 24 hours for surgery. RESULTS: The mean waiting time in hours was significantly reduced from 16.2 hours in scenario 1 (baseline) to 13.3 hours in scenario 2 and 13.6 hours in scenario 3 for hip-fracture surgery and from 26.0 hours in baseline to 18.9 hours in scenario 2 and 18.5 hours in scenario 3 for other non-elective patients. The percentage of patients who were treated within 24 hours significantly increased from 86.4% (baseline) to 96.1% (scenario 2) and 95.1% (scenario 3) for hip-fracture patients and from 60.2% (baseline) to 79.8% (scenario 2) and 79.8% (scenario 3) for patients with other non-elective patients. CONCLUSIONS: Healthcare managers who strive to improve the timelines of non-elective orthopaedic surgeries may benefit from using simulation modelling to analyse different strategies to support their decisions. In this specific case, the simulation results showed that the reduction of surgery turnover times could yield the same results as an extra OR.

Continuous innovation: developing and using a clinical database with new technology for patient-centred care--the case of the Swedish quality register for arthritis.

OBJECTIVE: We describe and explain the development of a clinical quality database and its use for different clinical, management and patient empowerment purposes. DESIGN: A longitudinal case study covering 1993-2009. SETTING: Rheumatology departments in Swedish hospitals. PARTICIPANTS: Those involved in developing the clinical database and its applications and a limited number of users. INTERVENTION(S): Different methods for inputting and storing clinical and patient data and for analysing and presenting the data to providers and patients. MAIN OUTCOME MEASURE(S): Participants' perceptions of the value of different applications and of influences, which helped and hindered the development of the system. RESULTS: Different innovations were introduced at different times continually to increase the ultility of the clinical data and the clinic- and patient coverage of the clinical data system. Limited interview data show postive patient and provider perceptions of the latest application to collect and present data as time trend visual display in the clinical consultation. CONCLUSIONS: A longitudinal perspective revealed how a clinical quality register was developed and how new technologies not imagined in the early 1990s continue to increase the ultility and value of the clinical database. This historical perspective provided limited evidence of impact, but does provide lessons for current strategies for innovation for quality in health care and of the need to consider innovolution processes, rather than discrete innovations, given the rapid pace of change in new technologies. More evidence is needed of the impact of such registers, and of enhancements, on providers and patients and on costs.