Participation preferences of health service users in health care decision‐making regarding rehabilitative care in Germany—A cross‐sectional study

BackgroundInvolving patients and citizens in health care decision‐making is considered increasingly important in Germany. Participatory structures have been implemented, especially in rehabilitative care. However, it is unknown whether and to what extent German patients and citizens want to participate in decisions that exceed their own medical treatment.ObjectiveThis study aimed to survey participation preferences and associated factors of health service users in decisions regarding rehabilitative care at micro, meso and macro levels.MethodsA questionnaire was sent to 3872 former rehabilitants. We collected participation preferences using the Control Preference Scale or an adapted form. Possible influencing factors were examined using logistic regression models.ResultsThe response rate was 5.7% (n = 217). At all decision‐making levels, joint decision‐making was preferred. At the macro level, preferences for actively participating were the highest. Preferences were significantly interrelated between decision‐making levels. At the micro level, an orthopaedic indication significantly decreased the desire for participation compared to psychosomatic indications (odds ratio = 0.44, p = .019).DiscussionParticipants wanted to be equally involved in decision‐making as experts. Higher preferences for active participation at the macro level might be due to dissatisfaction with the current health care organisation and lack of trust in politicians. Compared to the general public, our study sample was older (73.3% between 50 and 69 years) and more often chronically ill—factors associated with increased participation preferences in the literature.ConclusionContrary to the identified preferences, participation opportunities in the German health care system are rare. Further research on participation preferences and structures that enable meaningful involvement are needed.     

Creating opportunities for patient participation in managing medications across transitions of care through formal and informal modes of communication

BackgroundCommunicating about medications across transitions of care is important in older patients who frequently move between health care settings. While there is increasing interest in understanding patient communication across transitions of care, little is known about older patients'' involvement in formal and informal modes of communication regarding managing medications.ObjectiveThe aim of this paper was to explore how older patients participated in managing their medications across transitions of care through formal and informal modes of communication.MethodsThe study was conducted across two metropolitan hospitals: an acute hospital and a geriatric rehabilitation hospital in metropolitan Melbourne, Australia. A focused ethnographic design was used involving semi‐structured interviews (n = 50), observations (203 h) and individual interviews or focus groups (n = 25). Following thematic analysis, data were analysed using Fairclough''s Critical Discourse Analysis.ResultsData analysis revealed two major discursive practices, which comprised of an interplay between formal and informal communication and environmental influences on formal and informal communication. Self‐created patient notes were used by older patients to initiate informal discussion with health professionals about medication decisions, which challenged traditional unequal power relations between health professionals and patients. Formal prompts on electronic medication administration records facilitated the continuous information discourse about patients'' medications across transitions of care and encouraged health professionals to seek out older patients'' preferences through informal bedside interactions. Environmental influences on communication comprised health professionals'' physical movements across private and public spaces in the ward, their distance from older patients at the bedside and utilization of the computer systems during patient encounters.ConclusionOlder patients'' self‐created medication notes enabled them to take on a more active role in formal and informal medication communication across transitions of care. Older patients and family members did not have continuous access to information about medication changes during their hospital stay and systems often failed to address older patients'' key concerns about their medications, which hindered their active involvement in formal and informal communication.Patient or Public ContributionOlder adults, family members and health professionals volunteered to be interviewed and observed.     

Effectiveness of a structured short intervention against stigmatisation in chronic visible skin diseases: Results of a controlled trial in future educators

BackgroundChronic visible skin diseases are highly prevalent, and patients affected frequently report feeling stigmatised. Interventions to reduce stigmatisation are rare.ObjectivesThis study aimed to evaluate the effectiveness of a structured short intervention in reducing stigmatising attitudes towards psoriasis in future educators.MethodsThe intervention consisted of four components: (1) self‐reflection, (2) education on skin diseases, (3) contact between participants and a person with psoriasis and (4) practising of knowledge via case studies. A quasi‐experimental, pre–post study design was chosen with a nonrandomized contemporaneous control group that attended regular lessons. The main outcomes were participants'' desire for social distance, stereotype endorsement, illness‐related misconceptions and intended behaviour. Intervention effects were analysed using mixed repeated‐measures analysis of variance, with Bonferroni post‐hoc tests for pairwise comparisons.ResultsThe sample consisted of 221 students attending vocational training as educators (n = 118 intervention group, n = 103 control group). While no effect of the intervention was found in social distance, small to large effect sizes were observed for intended behaviour (r = .14), illness‐related misconceptions (r = .28) and stereotype endorsement (r = .42). The intervention group reported significantly higher satisfaction with the seminar compared to the control group.ConclusionsOverall, the short intervention was effective at reducing stigmatising attitudes in future educators. In perspective, revised versions could help in reducing stigmatisation in various demographics and promote patient empowerment by acknowledging and including them as experts on their own behalf.Patient or Public ContributionPatient advocate groups were consulted and involved in the superordinate destigmatization research programme and intervention.     

The effects of a mobile application for patient participation to improve patient safety

BackgroundPatient participation in patient safety activities in care processes is a fundamental element of safer care. Patients play an important role in preventing patient safety incidents and improving health outcomes. Therefore, healthcare providers need to develop and provide educational materials and actionable tools for patient participation.ObjectivesThis study aimed to develop a mobile application for health consumers'' participation and evaluate the effect of the mobile application on improving health consumers'' participation in patient safety.MethodsA quasi‐experimental design was adopted. We developed a mobile application on the basis of a needs assessment, literature review, compilation of patient safety topics, and validity testing of the application. The target population included Korean adults aged between 30 and 65 years who had visited a medical institution more than once within the most recent 6 months. The intervention group received patient participation training by using the mobile application, Application for Patient Participation in Safety Enhancement, for 2 months. The primary outcome variables were patient safety knowledge, self‐efficacy of participation, willingness to participate and experience of patient participation in patient safety activities. End‐user satisfaction was assessed using a questionnaire. To assess participants'' experiences with the intervention, qualitative data were collected through a focus group interview and open‐ended responses to an end‐user satisfaction survey.ResultsThe intervention group (n = 60) had significantly higher overall average scores than the control group (n = 37) with regard to patient safety knowledge (p < .001), self‐efficacy of participation (p = .001), willingness to participate (p = .010) and experience of participation (p = .038) in the post‐survey. The total mean end‐user satisfaction score was 3.56 ± 0.60. The participants expressed the realization that patients could play an important role in improving patient safety.ConclusionsThis study demonstrated that educating health consumers through a mobile application with useful information improves patient participation in patient safety activities. Educational materials and patient participation tools could motivate health consumers'' health‐related behaviours.Patient or Public ContributionPatients were involved during the programme development and evaluation.     

Use of co‐design methodology in the development of cardiovascular disease secondary prevention interventions: A scoping review

IntroductionThere is growing evidence to support the use of co‐design in developing interventions across many disciplines. This scoping review aims to examine how co‐design methodology has been used in the development of cardiovascular disease (CVD) secondary prevention interventions within health and community settings.MethodsWe searched four academic databases for studies that used the co‐design approach to develop their intervention. Studies were included if consumers (adults with CVD) and key stakeholders (e.g. clinicians, service providers) were involved in the co‐design process. The review focused on methodology rather than traditional study outcomes; therefore, co‐design processes and activities were extracted and evaluated against a selected co‐design framework.ResultsTwenty‐two studies were included in this review. Studies were implemented across various settings with consumers and stakeholder groups most frequently consisting of patients and healthcare professionals, respectively. Most studies specifically stated that they used a ‘co‐design’ approach (n = 10); others used terms such as participatory action research (n = 3), user‐centred design (n = 3) and community‐based participatory research (n = 2). Although there was variability in terminology, co‐design processes, and participants, all studies adhered to the key principles of consumer engagement. Predominant co‐design activities included semistructured interviews, focus groups, co‐design/development workshops and advisory group meetings. Intervention effectiveness was assessed in eight studies showing mixed results.ConclusionsThis review provides an overview of how the co‐design approach has previously been used in the development of CVD secondary prevention interventions. These findings provide methodological considerations that can guide researchers and healthcare services when implementing co‐design to develop feasible and acceptable interventions that can improve outcomes for CVD populations.Patient or Public ContributionNo patients, service users, caregivers, people with lived experience or members of the public were involved in this scoping review. This review article was written by academics who have undertaken a significant amount of co‐design work with consumers and stakeholders.     

Experiences of parents whose children participated in a longitudinal follow‐up study

BackgroundLong‐term follow‐up is necessary to understand the impact of perinatal interventions. Exploring parents'' motives and experiences in consenting to their children taking part in longitudinal studies and understanding what outcomes are important to families may enhance participation and mitigate the loss to follow‐up. As existing evidence is largely based on investigators'' perspectives using Western samples, the present pilot study explored parents'' perspectives in a multicultural New Zealand context.MethodsData were generated using semi‐structured interviews with parents whose children had participated in a longitudinal study after neonatal recruitment. Parents'' experiences of being part of the study were analysed thematically using an inductive approach.ResultsParents (n = 16) were generally happy with the outcomes measured. Additionally, parents were interested in lifelong goals such as the impact of parental diabetes. We identified three themes: (1) Facilitators: Research participation was aided by motives and parent and research characteristics such as wishing to help others and straightforward recruitment; (2) Barriers: A hesitancy to participate was due to technical and clinical research aspects, participation burden and cultural barriers, such as complex wording, time commitment and nonindigenous research and (3) Benefits: Children and parents experienced advantages such as the opportunity for education.ConclusionsParents reported positive experiences and described the unexpected benefit of increasing families'' health knowledge through participation. Improvements for current follow‐up studies were identified. Different ethnicities reported different experiences and perspectives, which warrants ongoing research, particularly with indigenous research participants.Patient or Public ContributionNo active partnership with parents of patients took place.     

A valued voice: A qualitative analysis of parental decision‐making preferences in emergent paediatric surgery

IntroductionShared decision‐making, with an emphasis on patient autonomy, is often advised in healthcare decision‐making. However, this may be difficult to implement in emergent settings. We have previously demonstrated that when considering emergent operations for their children, parents prefer surgeon guidance as opposed to shared decision‐making. Here, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision‐making preferences.MethodsParents of paediatric patients who underwent surgery over the past 5 years at a University‐based, tertiary children''s hospital for cancer, an emergent operation while in the neonatal intensive care unit (NICU) or extracorporeal membrane oxygenation (ECMO) were invited to complete a 60‐min semi‐structured interview. Interviews were digitally recorded and transcribed verbatim. Thematic content analysis was performed via deductive and inductive analysis. An iterative approach to thematic sampling/data analysis was used.ResultsThematic saturation was achieved after 12 interviews (4 cancer, 5 NICU and 3 ECMO). Five common themes were identified: (1) recommendations from surgeons are valuable; (2) ‘lifesaving mode’: parents felt there were no decisions to be made; (3) effective ways of obtaining information about treatment; (4) shared decision‐making as a ‘dialogue’ or ‘discussion’ and (5) parents as a ‘valued voice’ to advocate for their children.ConclusionsWhen engaging in decision‐making regarding emergent surgical procedures for their children, parents value a surgeon''s recommendation. Parents felt that discussion or dialogue with surgeons defined shared decision‐making, and they believed that the opportunity to ask questions gave them a ‘valued voice’, even when they felt there were no decisions to be made.Patient or Public ContributionFor this study, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision‐making preferences. Parents thus provided all the data for the study.     

Medicaid healthy behavior incentives and use of dental services

ObjectiveTo examine changes in access to dental care in states using Section 1115 waivers to implement healthy behavior incentive (HBI) programs in their Medicaid expansion under the ACA, compared to traditional expansion states and nonexpansion states.Data sourcesBehavioral Risk Factor Surveillance System from 2008 to 2018.Study designWe used difference‐in‐differences analysis to compare changes in three Medicaid expansion states with HBI (Iowa, Indiana, Michigan) to traditional expansion (Minnesota, North Dakota, Ohio) and nonexpansion states (Nebraska, South Dakota, Wyoming) in the same mid‐Western region of the country. The sample included 32 556 low‐income adults.Data collection/extraction methodsNA.Principal findingsWe found no significant changes in dental visits associated with HBI or traditional expansion relative to nonexpansion states. HBI expansion was associated with an increase of 2.2 percentage points in reporting a dental visit in the past year for adults in urban areas (P < 0.05) while the traditional expansion was associated with a reduction of 8.5 percentage points (P < 0.01) in utilization in rural areas relative to nonexpansion states. However, after adjustment for preexisting trends, the coefficients were no longer significant, suggesting that these differences are likely due to preexisting trends.ConclusionsWe did not find evidence of increased utilization of routine dental care associated with HBI programs.     

COVID‐19‐related Medicaid enrollment in Medicaid expansion and non‐expansion states

Research ObjectiveTo explore whether expanded Medicaid helps mitigate the relationship between unemployment due to COVID and being uninsured. Unanticipated unemployment spells are generally associated with disruptions in health insurance coverage, which could also be the case for job losses during the COVID‐19 pandemic. Expanded access to Medicaid may insulate some households from long uninsurance gaps due to job loss.Data SourcePhase 1 of the Census Bureau''s Experimental Household Pulse Survey covering April 23, 2020–July 21, 2020.Study DesignWe compare differences in health insurance coverage source and status linked to recent lob losses attributable to the COVID‐19 pandemic in states that expanded Medicaid against states that did not expand Medicaid.Data Collection/Extraction MethodsOur analytical dataset was limited to 733,181 non‐elderly adults aged 20–64.Principal FindingsTwenty‐six percent of our study sample experienced an income loss between March 13, 2020, and the time leading up to the survey—16% experienced job losses (e.g., layoff, furlough) due to the COVID‐19 crisis, and 11% had other reasons they were not working. COVID‐linked job losses were associated with a 20 (p < 0.01) percentage‐point (PPT) lower likelihood of having employer‐sponsored health insurance (ESI). Relative to persons in states that did not expand Medicaid, persons in Medicaid expansion states experiencing COVID‐linked job losses were 9 PPT (p < 0.01) more likely to report having Medicaid and 7 PPT (p < 0.01) less likely to be uninsured. The largest increases in Medicaid enrollment were among people who, based on their 2019 incomes, would not have qualified for Medicaid previously.ConclusionsOur findings suggest that expanded Medicaid eligibility may allow households to stabilize health care needs and they should become detached from private health coverage due to job loss during the pandemic. Households negatively affected by the pandemic are using Medicaid to insure themselves against the potential health risks they would incur while being unemployed.     

The impact of Medicare shared savings program participation on hospital financial performance: An event‐study analysis

ObjectiveTo evaluate the impact of hospitals'' participation in the Medicare Shared Savings Program (MSSP) on their financial performance.Data SourcesCenters for Medicare & Medicaid Services Hospital Cost Reports and MSSP Accountable Care Organizations (ACO) Provider‐Level Research Identifiable File from 2011 to 2018.Study DesignWe used an event‐study design to estimate the temporal effects of MSSP participation on hospital financial outcomes and compared within‐hospital changes over time between MSSP and non‐MSSP hospitals while controlling for hospital and year fixed effects and organizational and service‐area characteristics. The following financial outcomes were evaluated: outpatient revenue, inpatient revenue, net patient revenue, Medicare revenue, operating margin, inpatient revenue share, Medicare revenue share, and allowance and discount rate.Data Collection/Extraction MethodsSecondary data linked at the hospital level.Principal FindingsControlling for trends in non‐MSSP hospitals, MSSP participation was associated with differential increases in net patient revenue by $3.28 million (p < 0.001), $3.20 million (p < 0.01), and $4.20 million (p < 0.01) in the second, third, and fourth year and beyond after joining MSSP, respectively. Medicare revenue differentially increased by $1.50 million (p < 0.05), $2.24 million (p < 0.05), and $4.47 million (p < 0.05) in the first, second, and fourth year and beyond. Inpatient revenue share differentially increased by 0.29% (p < 0.05) in the second year and 0.44% (p < 0.05) in the fourth year and beyond. Medicare revenue share differentially increased by 0.17% (p < 0.01), 0.25% (p < 0.01), 0.32% (p < 0.01), and 0.41% (p < 0.01) in consecutive years following MSSP participation. MSSP participation was associated with 0.33% (p < 0.05) and 0.39% (p < 0.05) differential reduction in allowance and discount rate in the second and third years.ConclusionsMSSP participation was associated with differential increases in net patient revenue, Medicare revenue, inpatient revenue share, and Medicare revenue share, and a differential reduction in allowance and discount rate.     

Clinician perspectives on clinical decision support systems in lung cancer: Implications for shared decision‐making

BackgroundLung cancer treatment decisions are typically made among clinical experts in a multidisciplinary tumour board (MTB) based on clinical data and guidelines. The rise of artificial intelligence and cultural shifts towards patient autonomy are changing the nature of clinical decision‐making towards personalized treatments. This can be supported by clinical decision support systems (CDSSs) that generate personalized treatment information as a basis for shared decision‐making (SDM). Little is known about lung cancer patients'' treatment decisions and the potential for SDM supported by CDSSs. The aim of this study is to understand to what extent SDM is done in current practice and what clinicians need to improve it.ObjectiveTo explore (1) the extent to which patient preferences are taken into consideration in non‐small‐cell lung cancer (NSCLC) treatment decisions; (2) clinician perspectives on using CDSSs to support SDM.DesignMixed methods study consisting of a retrospective cohort study on patient deviation from MTB advice and reasons for deviation, qualitative interviews with lung cancer specialists and observations of MTB discussions and patient consultations.Setting and ParticipantsNSCLC patients (N = 257) treated at a single radiotherapy clinic and nine lung cancer specialists from six Dutch clinics.ResultsWe found a 10.9% (n = 28) deviation rate from MTB advice; 50% (n = 14) were due to patient preference, of which 85.7% (n = 12) chose a less intensive treatment than MTB advice. Current MTB recommendations are based on clinician experience, guidelines and patients'' performance status. Most specialists (n = 7) were receptive towards CDSSs but cited barriers, such as lack of trust, lack of validation studies and time. CDSSs were considered valuable during MTB discussions rather than in consultations.ConclusionLung cancer decisions are heavily influenced by clinical guidelines and experience, yet many patients prefer less intensive treatments. CDSSs can support SDM by presenting the harms and benefits of different treatment options rather than giving single treatment advice. External validation of CDSSs should be prioritized.Patient or Public ContributionThis study did not involve patients or the public explicitly; however, the study design was informed by prior interviews with volunteers of a cancer patient advocacy group. The study objectives and data collection were supported by Dutch health care insurer CZ for a project titled ‘My Best Treatment’ that improves patient‐centeredness and the lung cancer patient pathway in the Netherlands.     

Trauma‐informed patient and public‐engaged research: Development and evaluation of an online training programme

IntroductionAs patients, members of the public, and professional stakeholders engage in co‐producing health‐related research, an important issue to consider is trauma. Trauma is very common and associated with a wide range of physical and behavioural health conditions. Thus, it may benefit research partnerships to consider its impact on their stakeholders as well as its relevance to the health condition under study. The aims of this article are to describe the development and evaluation of a training programme that applied principles of trauma‐informed care (TIC) to patient‐ and public‐engaged research.MethodsA research partnership focused on addressing trauma in primary care patients (‘myPATH’) explicitly incorporated TIC into its formation, governance document and collaborative processes, and developed and evaluated a free 3‐credit continuing education online training. The training was presented by 11 partners (5 professionals, 6 patients) and included academic content and lived experiences.ResultsTraining participants (N = 46) positively rated achievement of learning objectives and speakers'' performance (ranging from 4.39 to 4.74 on a 5‐point scale). The most salient themes from open‐ended comments were that training was informative (n = 12) and that lived experiences shared by patient partners were impactful (n = 10). Suggestions were primarily technical or logistical.ConclusionThis preliminary evaluation indicates that it is possible to incorporate TIC principles into a research partnership''s collaborative processes and training about these topics is well‐received. Learning about trauma and TIC may benefit research partnerships that involve patients and public stakeholders studying a wide range of health conditions, potentially improving how stakeholders engage in co‐producing research as well as producing research that addresses how trauma relates to their health condition under study.Patient or Public ContributionThe myPATH Partnership includes 22 individuals with professional and lived experiences related to trauma (https://www.usf.edu/cbcs/mhlp/centers/mypath/); nine partners were engaged due to personal experiences with trauma; other partners are community‐based providers and researchers. All partners contributed ideas that led to trauma‐informed research strategies and training. Eleven partners (5 professionals, 6 patients) presented the training, and 12 partners (8 professionals, 4 patients) contributed to this article and chose to be named as authors.     

Healthcare needs,experiences and treatment burden in primary care patients with multimorbidity: An evaluation of process of care from patients' perspectives

BackgroundPatients with multimorbidity often experience treatment burden as a result of fragmented, specialist‐driven healthcare. The ‘family doctor team'' is an emerging service model in China to address the increasing need for high‐quality routine primary care.ObjectiveThis study aimed to explore the extent to which treatment burden was associated with healthcare needs and patients'' experiences.MethodsMultisite surveys were conducted in primary care facilities in Guangdong province, southern China. Interviewer‐administered questionnaires were used to collect data from patients (N = 2160) who had ≥2 clinically diagnosed long‐term conditions (multimorbidity) and had ≥1 clinical encounter in the past 12 months since enrolment registration with the family doctor team. Patients'' experiences and treatment burden were measured using a previously validated Chinese version of the Primary Care Assessment Tool (PCAT) and the Treatment Burden Questionnaire, respectively.ResultsThe mean age of the patients was 61.4 years, and slightly over half were females. Patients who had a family doctor team as the primary source of care reported significantly higher PCAT scores (mean difference 7.2 points, p < .001) and lower treatment burden scores (mean difference −6.4 points, p < .001) when compared to those who often bypassed primary care. Greater healthcare needs were significantly correlated with increased treatment burden (β‐coefficient 1.965, p < .001), whilst better patients'' experiences were associated with lower treatment burden (β‐coefficient −0.252, p < .001) after adjusting for confounders.ConclusionThe inverse association between patients'' experiences and treatment burden supports the importance of primary care in managing patients with multimorbidity.Patient ContributionPrimary care service users were involved in the instrument development and data collection.     

Examining weather-related factors on physical activity levels of children from rural communities

ObjectiveThe objective was to examine the influence of weather on moderate-to-vigorous physical activity (MVPA) and light physical activity (LPA) levels of children aged 8–14 years from rural communities, an understudied Canadian population.MethodsChildren (n = 90) from four communities in rural Northwestern Ontario participated in this study between September and December 2016. Children’s MVPA and LPA were measured using an Actical accelerometer and demographic data were gathered from surveys of children and their parents. Weather data were collected from the closest weather station. Cross-classified regression models were used to assess the relationship between weather and children’s MVPA and LPA.ResultsBoys accumulated more MVPA than girls (b = 26.38, p < 0.01), children were more active on weekdays as compared with weekends (b = − 16.23, p < 0.01), children were less active on days with precipitation (b = − 22.88, p < 0.01), and higher temperature led to a significant increase in MVPA (b = 1.33, p  < 0.01). As children aged, they accumulated less LPA (b = − 9.36, p < 0.01) and children who perceived they had higher levels of physical functioning got more LPA (b = 25.18, p = 0.02). Similar to MVPA, children had higher levels of LPA on weekdays (b = − 37.24, p < 0.01) as compared to weekend days and children accumulated less LPA (b = −50.01, p < 0.01) on days with rain.ConclusionThe study findings indicate that weather influences rural children’s MVPA and LPA. Future research is necessary to incorporate these findings into interventions to increase rural children’s overall PA levels and improve their overall health.Electronic supplementary materialThe online version of this article (10.17269/s41997-020-00324-3) contains supplementary material, which is available to authorized users.