New status report from Norway: Implementation of patient involvement in Norwegian health care.

In Norway, shared decision-making (SDM) is on the top of the priorities announced by the health authorities. Accountability for implementing this priority has been delegated to the four health regions, and from there into particular departments, hospital trusts, working groups or SDM coordinators. Using abundant public funding, different approaches to producing and implementing patient decision aids have been developed. However, none of these is implemented by any Norwegian services on a regular basis, while the accessible decision aids on the national health platform are not quality approved and in very little use. An ongoing new project is aimed to resolve this dilemma. Health professional training has been developed as a meta-curriculum with multiple modules, adaptive to setting and user group, and designed as an open-source learning platform, based upon the experience of "SDM Ambassadors" delivering the training. Most of the modules are already implemented on a regular basis in the South-Eastern Health Region, and 5000 health care professionals have already graduated from the training modules. However, in the standard patient pathways, and in most of the national medical guidelines, the patient is still considered to be a passive receiver of directives or recommendations, rather than an active participant in their own health decisions. Considerable structural implementation has been done in the education guidelines of all health professions on all levels to embed SDM principles. Teaching in SDM skills, quality of information and evidence-based nursing has become standard in most of the programs at Norwegian universities. Nevertheless, we currently still have no reliable estimate on the degree to which patients are actually involved in their own health decision-making. Further efforts in the process of implementing the patient's choice in the health system should involve the municipal services, follow a research-based strategy, include monitoring and consider the quality level of the informational environment of health-related decisions.

Rapid methods including network meta-analysis to produce evidence in clinical decision support: a decision analysis.

BACKGROUND: Conducting systematic reviews is time-consuming but crucial to construct evidence-based patient decision aids, clinical practice guidelines and decision analyses. New methods might enable developers to produce a knowledge base more rapidly. However, trading off scientific rigour for speed when creating a knowledge base is controversial, and the consequences are insufficiently known. We developed and applied faster methods including systematic reviews and network meta-analyses, assessed their feasibility and compared them to a gold standard approach. We also assessed the feasibility of using decision analysis to perform this comparison. METHODS: Long-term treatment in bipolar disorder was our testing field. We developed two new methods: an empirically based, rapid network meta-analysis (NMA) and an expert NMA, and conducted a patient survey. We applied these methods to collect effect estimates for evidence-based treatments on outcomes important to patients. The relative importance of outcomes was obtained from patients using a stated preference method. We used multi-criteria decision analysis to compare a gold standard NMA with the rapid NMA in terms of the ability of the gold standard NMA to change the ranking and expected values of treatments for individual patients. RESULTS: Using rapid methods, it was feasible to identify evidence addressing outcomes important to patients. We found that replacing effect estimates from our rapid NMA with estimates from the gold standard NMA resulted in relatively small changes in the ranking and expected value of treatments. The rapid method sufficed to estimate the effects of nine out of ten options. To produce a ranking of treatments accurate for more than 95% of patients, it was necessary to supplement systematic with rapid methods and to use relative importance weights in the analysis. Integrating estimates of the outcome "treatment burden" had a larger impact on rankings than replacing rapid with gold standard methods. Using patients' importance weights only modestly affected results. CONCLUSIONS: The transfer of knowledge to practice could benefit from faster systematic reviewing methods. The results in this preliminary assessment suggest that an improved rapid NMA approach might replace gold standard NMAs. Decision analysis could be used to compare evidence summarisation methods.

The development and feasibility of a personal health-optimization system for people with bipolar disorder.

BACKGROUND: People with bipolar disorder often experience ill health and have considerably reduced life expectancies. Suboptimal treatment is common and includes a lack of effective medicines, overtreatment, and non-adherence to medical interventions and lifestyle measures. E- and m-health applications support patients in optimizing their treatment but often exhibit conceptual and technical shortcomings. The objective of this work was to develop and test the usability of a system targeting suboptimal treatment and compare the service to other genres and strategies. METHODS: Based on the frameworks of shared decision-making, multi-criteria decision analysis, and single-subject research design, we interviewed potential users, reviewed research and current approaches, and created a first version using a rapid prototyping framework. We then iteratively improved and expanded the service based on formative usability testing with patients, healthcare providers, and laypeople from Norway, the UK, and Ukraine. The evidence-based health-optimization system was developed using systematic methods. The System Usability Scale and a questionnaire were administered in formative and summative tests. A comparison of the system to current standards for clinical practice guidelines and patient decision aids was performed. RESULTS: Seventy-eight potential users identified 82 issues. Driven by user feedback, the limited first version was developed into a more comprehensive system. The current version encompasses 21 integrated core features, supporting 6 health-optimization strategies. One crucial feature enables patients and clinicians to explore the likely value of treatments based on mathematical integration of self-reported and research data and the patient's preferences. The mean ± SD (median) system usability score of the patient-oriented subsystem was 71 ± 18 (73). The mean ± SD (median) system usability score in the summative usability testing was 78 ± 18 (75), well above the norm score of 68. Feedback from the questionnaire was generally positive. Eighteen out of 23 components in the system are not required in international standards for patient decision aids and clinical practice guidelines. CONCLUSION: We have developed the first evidence-based health-optimization system enabling patients, clinicians, and caregivers to collaborate in optimizing the patient's health on a shared platform. User tests indicate that the feasibility of the system is acceptable.

Status report from Norway: Implementation of patient involvement in Norwegian health care.

Norway has traditionally high standards regarding civil rights particularly emphasizing equal access to societal resources including health care. This background and the health care system's centralized national organization make it perfectly suited for implementation of shared decision making (SDM). In recent years, great efforts have been made by policy- makers, regional health authorities and not least the patients to facilitate a process of change in health communication culture. SDM is currently even given highest priority in health care strategies on all system levels. SDM has been structurally implemented, e.g. by including corresponding guidance in the standard patient pathways. Moreover, SDM is established as an element of service on the national health portal hosting a constantly increasing number of decision aids. Essentially the Norwegian Knowledge Center for Health Services contributes by searching and providing information for use in decision aids. Implementation is now being rolled out unit by unit for a list of medical problems as a series production of SDM using decision aids and health professional training. Importantly, production of SDM begins and succeeds as a soundly structured communication with both clinical environments and patients. However, as communication training has not been implemented before now, there are no data demonstrating sufficient realization of SDM in current health care. Beyond making reasonable use of scientific achievements, the Norwegian movement's secret of success is the simultaneous commitment of all actors of the health system to a common idea.

Patient-Important Outcomes in the Long-Term Treatment of Bipolar Disorder: A Mixed-Methods Approach Investigating Relative Preferences and a Proposed Taxonomy.

BACKGROUND: In patient-centered healthcare, the assessment and selection of treatment should be based on outcomes important to patients and the relative importance patients place on these outcomes. The evidence base on long-term treatment outcomes important to patients with bipolar disorder is inconclusive. OBJECTIVE: The aim of this study was to investigate the relative importance of patient-important outcomes in bipolar disorder, and to construct a holistic and logically sound shortlist of treatment outcomes relevant in the evaluation and selection of pharmacological treatment in bipolar disorder. METHOD: Overall, 22 outpatients from southern and eastern Norway participated in four focus groups, and suggested outcomes important in treatment decisions. Quantitative, relative importance weights for treatment outcomes identified in literature reviews were elicited from each participant, employing a self-explicated approach (SEA). The method combined a ranking- and rating-stated preference exercise and resulted in a 0-100 SEA-score for each outcome. RESULTS: Outcomes from the literature accommodated the outcomes suggested in the focus groups. Mean age in the sample was 42 years and 64% were women. All patients completed the exercises with consistent results. The most important outcomes were severe depression (median SEA 95 [interquartile range 26]), severe mania (76 [40]), quality of life (65 [53]), work/school functioning (58 [48]), and social functioning (54 [50]). Avoiding severe mania was significantly more important to patients with bipolar disorder type I compared with patients with type II. Outcome scores correlated strongly (p < 0.01) across the ranking and rating exercises. Based on the results, a simplified and consistent set of outcomes was constructed. CONCLUSIONS: Patients' preferences for outcomes in the long-term treatment of bipolar disorder vary considerably. To advance patient-centered healthcare, we propose that researchers, clinical guideline producers, and patient-clinician dyads integrate a taxonomy of patient-important outcomes, such as constructed in this study, when assessing treatment options.

What matters to patients? A systematic review of preferences for medication-associated outcomes in mental disorders.

OBJECTIVE: To investigate patients' preferences for outcomes associated with psychoactive medications. SETTING/DESIGN: Systematic review of stated preference studies. No settings restrictions were applied. PARTICIPANTS/ELIGIBILITY CRITERIA: We included studies containing quantitative data regarding the relative value adults with mental disorders place on treatment outcomes. Studies with high risk of bias were excluded. PRIMARY AND SECONDARY OUTCOME MEASURES: We restricted the scope of our review to preferences for outcomes, including the consequences from, attributes of, and health states associated with particular medications or medication classes, and process outcomes. RESULTS: After reviewing 11 215 citations, 16 studies were included in the systematic review. These studies reported the stated preferences from patients with schizophrenia (n=9), depression (n=4), bipolar disorder (n=2) and attention deficit hyperactive disorder (n=1). The median sample size was 81. Side effects and symptom outcomes outnumbered functioning and process outcomes. Severe disease and hospitalisation were reported to be least desirable. Patients with schizophrenia tended to value disease states as higher and side effects as lower, compared to other stakeholder groups. In depression, the ability to cope with activities was found to be more important than a depressed mood, per se. Patient preferences could not consistently be predicted from demographic or disease variables. Only a limited number of potentially important outcomes had been investigated. Benefits to patients were not part of the purpose in 9 of the 16 studies, and in 10 studies patients were not involved when the outcomes to present were selected. CONCLUSIONS: Insufficient evidence exists on the relative value patients with mental disorders place on medication-associated outcomes. To increase patient-centredness in decisions involving psychoactive drugs, further research-with outcomes elicited from patients, and for a larger number of conditions-should be undertaken. TRIAL REGISTRATION NUMBER: PROSPERO CRD42013005685.