Patient Participation In Decision Research Articles

Implementation of the Recovery Model and Its Outcomes in Patients with Severe Mental Disorder.

The recovery model assumes that the patient can experience personal growth even while maintaining symptoms of a mental disorder. In order to achieve this recovery, the practices of professionals must also change. However, in our setting, there are limited data on the implementation of practices based on the recovery model and their effect on personal recovery. To describe the association between professionals' practices and patients' personal recovery. An observational and cross-sectional study in which the Recovery Self-Assessment (RSA) was used to assess the degree of implementation of the different practices and the Recovery Assessment Scale (RAS) was used to assess the personal recovery of 307 patients with severe mental disorders. Patients attended by professionals who followed the recovery model obtained a greater personal recovery (p < 0.001, d = 1.10). The dimension associated with greater recovery was that of working toward life goals. The least implemented dimensions had to do with offering treatment options and patient participation in decision-making. This study was conducted in accordance with STROBE (STrengthening the Reporting of OBservational studies in Epidemiology). Although this is a cross-sectional study that does not allow us to establish causal relationships, it shows that the model with which mental health professionals work is associated with patients' chances of recovery. We therefore consider that it is important to foster the implementation of practices based on the recovery model within mental health care.

Patient influence on general practice service improvement decision making: a participatory research mixed-methods intervention study.

Health policy promotes patient participation in decision making about service organisation. In English general practice this happens through contractually required patient participation groups (PPGs). However, there are problems with the enactment of PPGs that have not been systematically addressed. To observe how a co-designed theory-informed intervention can increase representational legitimacy and facilitate power sharing to support PPGs to influence decision making about general practice service improvement. Participatory action research to implement the intervention in two general practices in the North of England was undertaken. The intervention combined two different participatory practices: partnership working involving externally facilitated meetings with PPG members and staff; and consultation with the wider patient population using a bespoke discrete choice experiment (DCE). To illustrate decision making in PPGs, qualitative data are presented from participant observation notes and photographed visual data generated through participatory methods. The DCE results are summarised to illustrate how wider population priorities contributed to overall decision making. Observational data were thematically analysed using normalisation process theory with support from a multi-stakeholder co-research group. In both general practices, patients influenced decision making during PPG meetings and through the DCE, resulting in bespoke patient-centred action plans for service improvement. Power asymmetries were addressed through participatory methods, clarification of PPG roles in decision making, and addressing representational legitimacy through wider survey consultation. Combining participatory practices and facilitated participatory methods enabled patients to influence decision making about general practice service improvement. The policy of mandatory PPGs needs updating to recognise the need to resource participation in a meaningful way.

More than medications: a patient-centered assessment of Parkinson's disease care needs during hospitalization.

Parkinson's disease (PD) increases the risk of hospitalization and complications while in the hospital. Patient-centered care emphasizes active participation of patients in decision-making and has been found to improve satisfaction with care. Engaging in discussion and capturing hospitalization experience of a person with PD (PwP) and their family care partner (CP) is a critical step toward the development of quality improvement initiatives tailored to the unique hospitalization needs of PD population. This qualitative study aimed to identify the challenges and opportunities for PD patient-centered care in hospital setting. Focus groups were held with PwPs and CPs to capture first-hand perspectives and generate consensus themes on PD care during hospitalization. A semi-structured guide for focus group discussions included questions about inpatient experiences and interactions with the health system and the clinical team. The data were analyzed using inductive thematic analysis. A total of 12 PwPs and 13 CPs participated in seven focus groups. Participants were 52% female and 28% non-white; 84% discussed unplanned hospitalizations. This paper focuses on two specific categories that emerged from the data analysis. The first category explored the impact of PD diagnosis on the hospital experience, specifically during planned and unplanned hospitalizations. The second category delves into the unique needs of PwPs and CPs during hospitalization, which included the importance of proper PD medication management, the need for improved hospital ambulation protocols, and the creation of disability informed hospital environment specific for PD. PD diagnosis impacts the care experience, regardless of the reason for hospitalization. While provision of PD medications was a challenge during hospitalization, participants also desired flexibility in ambulation protocols and an environment that accommodated their disability. These findings highlight the importance of integrating the perspectives of PwPs and CPs when targeting patient-centered interventions to improve hospital experiences and outcomes.

Factors influencing the implementation of shared decision-making in breast cancer care: protocol for a mixed-methods study

IntroductionChile is committed to actively involving patients in their healthcare. However, little is known about how this is translated into clinical encounters. Breast cancer (BC) is the first cause of...

COVID-19’s impact on care practice for alpha-1-antitrypsin deficiency patients

BackgroundPatients with alpha-1 antitrypsin deficiency (AATD), commonly categorized as a rare disease, have been affected by the changes in healthcare management brought about by COVID-19. This study’s aim was to identify the changes that have taken place in AATD patient care as a result of the COVID-19 pandemic in Spain and to propose experts’ recommendations aimed at ensuring humanized and quality care for people with AATD in the post-pandemic situation.MethodsA qualitative descriptive case study with a holistic single-case design was conducted, using focus groups with experts in AATD clinical management, including 15 health professionals with ties to the Spanish health system (12 pneumologists and 2 hospital pharmacists from 11 different hospitals in Spain) and 1 patient representative.ResultsCOVID-19 has had a major impact on numerous aspects of AATD clinical patient management in Spain, including diagnostic, treatment, and follow-up phases. The experts concluded that there is a need to strengthen coordination between Primary Care and Hospital Care and improve the coordination processes across all the organizations and actors involved in the healthcare system. Regarding telemedicine and telecare, experts have concluded that it is necessary to promote this methodology and to develop protocols and training programs. Experts have recommended developing personalized and precision medicine, and patient participation in decision-making, promoting self-care and patient autonomy to optimize their healthcare and improve their quality of life. The possibility of monitoring and treating AATD patients from home has also been proposed by experts. Another result of the study was the recommendation of the need to ensure that plasma donations are made on a regular basis by a sufficient number of healthy individuals.ConclusionThe study advances knowledge by highlighting the challenges faced by health professionals and changes in AATD patient management in the context of the COVID-19 pandemic. It also proposes experts’ recommendations aimed at ensuring humanized and quality care for people with AATD in the post-pandemic situation. This work could serve as a reference study for physicians on their daily clinical practice with AATD patients and may also provide guidance on the changes to be put in place for the post-pandemic situation.

Patient participation in defining best-practice rheumatology service provision in Aotearoa New Zealand: a qualitative study with service consumers

BackgroundAotearoa New Zealand (AoNZ) has no agreed models for rheumatology service provision in government-funded health care. We aimed to describe what people with inflammatory rheumatic diseases who have used rheumatology services view as being important in those services, and map these views to previously collated statements describing best practice components of rheumatology services from international recommendations. If these statements did not capture all service aspects that people with inflammatory rheumatic diseases considered important, we aimed to co-create new statements with our patient-participants.MethodsWe conducted one focus group and an interview with people with inflammatory rheumatic disease who had used a government-funded rheumatology service in the previous 5 years (patient-participants) and analysed data using thematic analysis. The research team mapped subthemes to previously collated best practice recommendations that had been included in a Delphi consensus exercise with rheumatologists in AoNZ and proposed new statements, based on patient-participant data. Patient-participant feedback on thematic analysis and the new statements led to a refining of statements. A patient-partner in the research team informed research design and data analysis.ResultsPatient-participants viewed it as highly valuable for rheumatology services to respect and value their experiences as people and patients, and those of their whānau (Māori word for family). They expected rheumatology services to provide the right care, at the right time. Many of the subthemes mapped to the best-practice statements. However, three new principles and three new statements were developed and refined by patient-participants. The three principles addressed valuing individuals, and their whānau (family) and their experiences, and providing a patient-focused health system that supports patient participation in decision-making and self-management, and patient education. New statements related to having a specific rheumatologist and other staff for comprehensive care, having adequate nurse staffing, and active provision of outside services and support.ConclusionIt was important to patients that rheumatology services demonstrated that patients and their whānau (family) were valued. The inclusion of people with rheumatic diseases who are users of rheumatology services in service development can provide valuable insights to inform how services should be delivered.

Transitional Care from Hospital to Cardiac Rehabilitation During COVID-19: The Perspectives of Older Adults and Their Healthcare Providers.

Transitional care to cardiac rehabilitation during the pandemic was a complex process for older adults, with additional challenges for decision-making and participation. This study aimed to explore the perspectives of older adults and health providers on transitional care from the hospital to cardiac rehabilitation, focusing on patient participation in decision-making. A qualitative exploratory design was used. Semi-structured interviews were conducted with 15 older adults and 6 healthcare providers. Document analysis and reflexive journaling were used to support triangulation of findings. Six themes emerged from the data, related to insufficient follow-up from providers, the importance of patients' emotional and psychological health and the support provided by family members, the need for information tailored to patients' needs and spaces for participation in decision-making, as well as challenges during COVID-19, including delayed medical procedures, rushed discharge and isolating hospital stays. The findings of this study indicated a number of potential gaps in the provision of transitional care services as reported by older adults who had a cardiovascular event, often during the first few weeks post hospital discharge.

'I feel like they're actually listening to me': a pilot study of a hospital discharge decision-making conversation guide for patients with injection drug use-associated infections.

The prevalence of injection drug use (IDU)-associated infections and associated hospitalizations has been increasing for nearly two decades. Due to issues ranging from ongoing substance use to peripherally inserted central catheter safety, many clinicians find discharge decision-making challenging. Typically, clinicians advise patients to remain hospitalized for several weeks for intravenous antimicrobial treatment; however, some patients may desire other antimicrobial treatment options. A structured conversation guide, delivered by infectious disease physicians, intended to inform hospital discharge decisions has the potential to enhance patient participation in decisions. We developed a conversation guide in order to: (1) investigate its feasibility and acceptability and (2) examine experiences, outcomes, and lessons learned from use of the guide. We interviewed physicians after they each piloted the conversation guide with two patients. We interviewed patients immediately after the conversation and again 4-6 weeks later. Two analysts indexed transcriptions and used the framework method to identify and organize relevant information. We conducted retrospective chart review to corroborate and contextualize qualitative data. Eight patients and four infectious disease physicians piloted the conversation guide. All patients (N = 8) completed antimicrobial treatment. Nearly all participants believed the conversation guide was important for incorporating patient values and preferences. Patients reported an increased sense of autonomy, but felt post-discharge needs could be better addressed. Physician participants identified the guide's long length and inclusion of pain management as areas for improvement. A novel conversation guide to inform hospital discharge decision-making for patients with IDU-associated infections was feasible, acceptable, and fostered the incorporation of patient preferences and values into decisions. While we identified areas for improvement, overall participants believed that this novel conversation guide helped to improve patient care and autonomy.

Enhancing Residency Recruitment Processes to Facilitate a Diverse Work Force in Anesthesiology

Committee News| May 2022 Enhancing Residency Recruitment Processes to Facilitate a Diverse Work Force in Anesthesiology Sujatha Ramachandran, MBBS, MACM; Sujatha Ramachandran, MBBS, MACM Search for other works by this author on: This Site PubMed Google Scholar Camille Fontaine, MD; Camille Fontaine, MD Search for other works by this author on: This Site PubMed Google Scholar Tracey Straker, MD, MS, MPH, CBA, FASA Tracey Straker, MD, MS, MPH, CBA, FASA Search for other works by this author on: This Site PubMed Google Scholar ASA Monitor May 2022, Vol. 86, 36–37. https://doi.org/10.1097/01.ASM.0000830860.56287.f1 Views Icon Views Article contents Figures & tables Video Audio Supplementary Data Peer Review Share Icon Share Facebook Twitter LinkedIn MailTo Cite Icon Cite Get Permissions Search Site Citation Sujatha Ramachandran, Camille Fontaine, Tracey Straker; Enhancing Residency Recruitment Processes to Facilitate a Diverse Work Force in Anesthesiology. ASA Monitor 2022; 86:36–37 doi: https://doi.org/10.1097/01.ASM.0000830860.56287.f1 Download citation file: Ris (Zotero) Reference Manager EasyBib Bookends Mendeley Papers EndNote RefWorks BibTex toolbar search Search Dropdown Menu toolbar search search input Search input auto suggest filter your search All ContentAll PublicationsASA Monitor Search Advanced Search Topics: internship and residency, mentors, workforce Building a diverse workforce of physician anesthesiologists should be paramount for hospitals and health care systems. More inclusive preoperative staff would better reflect current demographics nationwide, help address health care disparities, encourage minority patient participation in decision-making, improve patient outcomes and satisfaction, and foster greater innovation in medicine (JAMA Intern Med 2014;174:289-91; Proc Natl Acad Sci U S A 2020;117:9284-91). Despite these indisputable advantages of physician workforce diversity, the percentage of people identifying as belonging to racial/ethnic minority groups in medicine has continued to remain below that of the general U.S. population (JAMA Netw Open 2019;2:e1910490; N Engl J Med 2019;380:803-5). In anesthesiology, the percentage of under-represented minority (URM) physicians is around 11%. Medical schools are documenting upward trends in Black and brown female graduates (asamonitor.pub/3tLSg8M; JAMA Intern Med 2015;175:1706-8). As per the Association of American Medical Colleges (AAMC), between 1986... You do not currently have access to this content.

Medicines regulation, pricing and reimbursement in Brazil

Brazil is an upper-middle-income country with a high human development index (HDI) of 0.765 (2019). The Unique Health System (SUS) is a universal, decentralised system, free at point-of-care, although 27% of Brazilians have voluntary supplementary health insurance. Medicines are provided free-of-charge through the SUS, though there are a few exceptions where co-payment is required. Around 87% of the country’s expenditure with medicines and medical devices corresponds to out-of-pocket, highlighting the importance of price regulation. Marketing authorisation and maximum price approval are mandatory market entry requirements for medicines. Pricing policies include maximum price approval, regulation of mark-ups, tax exemption, annual price adjustment and a mandatory discount for government procurement and enforcement mechanisms. The pricing of new drugs considers the patent status and added therapeutic benefit. It is a combination of health technology assessment and external or internal reference pricing, while drugs with active ingredients in the market follow internal reference pricing. The maximum price of generics must be up to 65% of the reference’s price. The maximum approved prices and public procurement prices are publicly available. Brazil has a value-based decision-making process for incorporating medicines and other technologies at the SUS. Current areas of work include horizon scanning, participation of patients in decision-making and re-assessment of technologies. As a decentralised system, medicines are procured by the Ministry of Health, states and municipalities, according to their level of responsibility. Pricing and reimbursement policies, including a consolidated generics policy, have been important in promoting transparency, predictability, and price stability, in turn contributing to cost-containment and access. Ongoing challenges include high rates of judicialisation, medicines with excessive prices not commensurate with their clinical benefits, no provision for pricing review, problems related to governance and politics. To address these challenges, the authors have three main recommendations. First: improving regulatory governance, second: incentivising the development and promoting access to medicines with stronger evidence, added clinical benefit and fair prices, and third: increasing awareness among stakeholders, avoiding judicialisation and minimising its impact; contributing to closing the gap between innovation and access to medicines.

An insight into patients\u2019 perspectives on barriers affecting participation in shared decision making among patients with diabetes mellitus in Malawi

BackgroundPatient participation in decision making is a basic tenet for a patient centred care experience and, has potential to improve care experiences and responsiveness in chronic diseases such as Diabetes Mellitus (DM). However, documented experiences show that patient participation in decisions making is wanting. As Malawi strives to institutionalise patient centred care delivery, it is important to examine patients’ experiences and perceptions to identify barriers affecting their participation in shared decision making because this may provide evidence supporting strategies in implementation of the institutionalisation.AimThe study sought to describe perspectives about barriers to participation in shared decision making among patients with DM in Malawi.MethodsThis was an exploratory qualitative study. We targeted patients attending DM clinics in four public health facilities in southern Malawi from September to December 2019. We used In-Depth Interviews and Focus Group Discussions. Data was managed using Nvivo version 11 software and analysed using Content Analysis.ResultsThe study highlights the values, perceptions and benefits of shared decision making. Furthermore, patients’ narratives expose the struggles and vulnerabilities in their attempts to engage their providers towards shared decision making.ConclusionInteractional power imbalances, insufficient dialogue and patients’ own restrictive attitudes towards engagement with their providers thwarts SDM in clinical encounters. To make SDM a reality, transforming medical education that emphasizes on the value of good patient-provider relationship and providers’ attitudes to regard patients as active partners may be a good starting point. Additionally, strategies that empower and change patients’ perceptions about SDM require investment.

Perceived Participation in Decision-Making on Primary Surgery and Associated Factors Among Early Breast Cancer Patients: A Cross-sectional Study.

Breast cancer patients wish to participate in the treatment decision-making, but the perceived participation was inconsistent with the willingness, leading to poor patient outcomes. The aims of this study were to explore the perceived participation in the primary surgery decision-making among Chinese patients with early-stage breast cancer (BCa) and to analyze the relationships of demographic and clinical factors, participation competence, self-efficacy, social support, and doctors' promotion of participation with the guidance of the capability, opportunity, motivation-behavior system (the COM-B system). Paper surveys were used to collect data from 218 participants. The participation competence, self-efficacy, social support, and the doctor facilitation of involvement were evaluated to measure factors related to perceived participation among early-stage BCa. Perceived participation was low, and participants with a high level of participation competence, self-efficacy, and social support and who were employed and had a higher education level and higher family income perceived higher participation in primary surgery decision-making. Perceived participation was low and may be facilitated by patients' internal and external factors during the decision-making process. Health professionals should be aware that patient participation in decision-making is a type of self-care health behavior, and targeted decision support interventions should be provided to facilitate participation. Patient-perceived participation may be evaluated from the perspective of self-care management behaviors among BCa patients. Nurse practitioners should emphasize their important roles in providing information, patient education, and psychological support to better contribute to the course of the treatment decision-making process for BCa patients who faced primary surgery.

Patient and Surgeon Ratings of Patient Involvement in Decision-Making Are Not Aligned.

Specialists want to guide patients toward making informed treatment choices consistent with what matters most to them (their values). One measure of this goal is alignment between patient and surgeon-perceived involvement in decision-making. We performed a cross-sectional survey of patients presenting for musculoskeletal specialty care to determine agreement between patients and surgeons regarding patient involvement in shared decision-making. We also tested (1) factors associated with specialist-perceived involvement, accounting for the patient's perceived involvement in decision-making, and (2) factors associated with patient perception of involvement in decision-making, accounting for ratings of preferred involvement. In this cross-sectional survey, 136 patients seeking musculoskeletal care for conditions involving the upper or lower extremities rated their preferred level of involvement in decision-making (Control Preferences Scale) before the visit and their perceived level of involvement (Modified Control Preferences Scale) after the visit. Participants also completed measures of symptoms of depression and pain self-efficacy. After the visit, the surgeons rated their perception of the patient's involvement in decision-making (Modified Control Preferences Scale). There was poor agreement between patients and surgeons regarding the extent of patient participation in decision-making (ICC = 0.11). The median difference was 1 point on a 5-point Likert scale (interquartile range: 0 to 1). Accounting for demographic characteristics and personal factors in multivariable analysis, specialists rated patients who did not have a high school diploma as having less involvement in decision-making. Specialist-perceived patient involvement in decision-making was not related to patient-perceived involvement. The only factor associated with higher patient-rated involvement was higher patient-preferred involvement (OR = 3.9; 95% CI = 2.6 to 5.8; p < 0.001). The observation that surgeons misperceive patient participation in decision-making emphasizes the need for strategies to ensure patient participation, such as methods to help patients gain awareness of what matters most to them (their values), clinician checklists for identification and reorientation of common misinterpretations of symptoms, and decision aids or motivational interviewing tools that can help to ensure that patient choices are consistent with their values and are unhindered by misconceptions.

The Decision-Making Process for Palliative Sedation for Patients with Advanced Cancer-Analysis from a Systematic Review of Prospective Studies.

Simple SummaryThe involvement of patients in decision making about their healthcare plans is being emphasized, but little is known how the decision making on palliative sedation is conducted and who are involved in. The aim of this study is to understand how decisions about palliative sedation are taken. The results may help to understand the reality of this decision-making considering when and by whom the decision-making process is initiated, patient involvement, family involvement and healthcare involvement. This may contribute to identifying aspects that should be improved.Background. The involvement of patients in decision making about their healthcare plans is being emphasized. In the context of palliative sedation, it is unclear how these decisions are made and who are involved in. The aim of the study is to understand how this decision-making is taken. Method. Information from a systematic review on clinical aspects of palliative sedation prospective studies were included. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014–December 2019). Data extraction and analysis regarded: (a) When and by whom the decision-making process is initiated; (b) patient involvement; (c) family involvement and (d) healthcare involvement. Results. Data about decision making were reported in 8/10 included articles. Palliative sedation was reported in 1137 patients (only 16 of them were non-cancer). Palliative sedation was introduced by the palliative care team during the disease process, at admission, or when patients experienced refractory symptoms. Only two studies explicitly mentioned the involvement of patients in decision making. Co-decision between families and the regular health care professionals was usual, and the health care professionals involved had been working in palliative care services. Conclusion. Patient participation in decision making appeared to be compromised by limited physical or cognitive capacity and family participation is described. The possibility of palliative sedation should be discussed earlier in the disease process.

An evaluation of advance care planning during the COVID-19 pandemic: a retrospective review of patient involvement in decision making using routinely collected data from digital ReSPECT records

To review advance care planning (ACP) practice during the COVID-19 pandemic, evaluating the number of plans created, patient participation, cardiopulmonary resuscitation recommendations and variation between different population groups. A retrospective analysis and comparison of routinely collected data from electronic recommended summary plan for emergency care and treatment (ReSPECT) records documented in April 2020 and January to December 2019. Electronic ReSPECT documents completed for adult patients at a large, acute hospital trust in the UK. The number of plans created per 1,000 admissions in April 2020 was 333.0% higher than in 2019. A greater proportion of plans created during April 2020 were discussed with the patient and the proportion containing a 'for cardiopulmonary resuscitation' recommendation was higher across all population groups. A greater proportion of plans were created for younger adults and Black and minority ethnic groups during the pandemic. Increased ACP during a crisis can be achieved alongside increased patient participation in decision making. A tool such as ReSPECT that supports recommendations for, as well as limitations on, treatment may have enabled the expansion of ACP observed.

Engaging Patients to Ask More Questions: What’s the Best Way? A Pragmatic Randomized Controlled Trial

Hand conditions are common, and often require a discussion of the tradeoffs of different treatment options. Our goal was to evaluate whether providing patients with a Question Prompt List (QPL) for common hand conditions improves their perceived involvement in care compared with providing patients with 3 generic questions. We performed a prospective, single-center, pragmatic randomized controlled trial. We created a QPL pamphlet for patients with common hand conditions. New patients with common hand conditions were enrolled between April 2019 and July 2019 and were randomized into either the QPL group (with 35 hand-specific questions) or the AskShareKnow group (3 generic questions: [1] What are my options? [2] What are the possible benefits and harms of those options? [3] How likely are each of these benefit and harms to happen to me?). Both groups received the questions prior to meeting with their surgeon. We used the Perceived Involvement in Care Scale (PICS), a validated instrument designed to evaluate patient participation in decision-making, as our primary outcome. The maximum PICS score is 13, and a higher score indicates higher perceived involvement. One hundred twenty-six patients participated in the study, with 63 patients in the QPL group and 63 patients in the AskShareKnow group. The demographic characteristics were similar in the 2 groups. The mean AskShareKnow group PICS score was 8.3 ± 2.2 and the mean QPL PICS score was 7.5 ± 2.8, which was not deemed clinically significant. The QPLs do not increase perceived involvement in care in patients with hand conditions compared with providing patients with 3 generic questions. Various approaches have been evaluated to help improve patient involvement in their care. In hand surgery, 3 generic questions were no different than a lengthy QPL with respect to patient involvement in their care.

Clinician Factors Rather Than Patient Factors Affect Discussion of Treatment Options.

Clinician Factors Rather Than Patient Factors Affect Discussion of Treatment Options.

Patient autonomy in dentistry: demonstrating the role for shared decision making

BackgroundEvidence-based practice, decision aids, patient preferences and autonomy preferences (AP) play an important role in making decisions with the patient. They are crucial in the process of a shared decision making (SDM) and can be incorporated into quality criteria for patient involvement in health care. However, there are few studies on SDM and AP in the field of dentistry. This study explored patients’ autonomy preferences in dentistry in comparison to other medical domains, comparing them with patient preferences in two other cohorts of patients with different conditions and in different health care settings.MethodsA sample of 100 dental patients attending 16 dentists was consecutively recruited in a university-based prosthodontic clinic. Patients’ and dentists’ preferences regarding their roles in dental decision making for commonly performed diagnostic and treatment decisions were compared using the Control Preference Scale (CPS). This was followed by cross sectional surveys to study autonomy preferences in three additional cohorts recruited from general practices (n = 100), a multiple sclerosis clinic (n = 109), and a university-based prosthodontic clinic (n = 100). A questionnaire with combined items from the Autonomy Preference Index (API) to assess general and the CPS to assess specific preferences was used in the additional cohorts.ResultsDentists were less willing to give patients control than patients were willing to enact autonomy. However, decisions about management of tooth loss were considered relevant for a shared decision making by both parties. When comparing cohorts from different samples, the highest AP was expressed by people with multiple sclerosis and the lowest by patients in dentistry (means: dentistry 2.5, multiple sclerosis 2.1, general practice 2.4, p = .035). There were considerable intra-individual differences in autonomy preferences referring to different decision types (p < .001). In general, more autonomy was desired for treatment decisions in comparison to diagnostic decisions, for trivial compared to severe conditions, and for dental care compared to general practice (all: p < .001).ConclusionThere is an important role of patient participation in decision making in dentistry. Furthermore, PA should be considered with respect to specific medical decisions instead of assessing autonomy preferences in general implying a need for communication skills training of health care professionals.

Electronic Health Record Technology Designed for the Clinical Encounter: MS NeuroShare.

Advances in medical discoveries have bolstered expectations of precise and complete care, but delivering on such a promise for complex, chronic neurologic care delivery requires solving last-mile challenges. We describe the iterative human-centered design and pilot process for multiple sclerosis (MS) NeuroShare, a digital health solution that brings practical information to the point of care so that clinicians and patients with MS can view, discuss, and make informed decisions together. We initiated a comprehensive human-centered process to iteratively design, develop, and implement a digital health solution for managing MS in the routine outpatient setting of the nonprofit Sutter Health system in Northern California. The human-centered codesign process included 3 phases: discovery and design, development, and implementation and pilot. Stakeholders included Sutter Health's Research Development and Dissemination team, academic domain experts, neurologists, patients with MS, and an advisory group. MS NeuroShare went live in November 2018. It included a patient- and clinician-facing web application that launches from the electronic health record, visually displays a patient's data relevant to MS, and prompts the clinician to comprehensively evaluate and treat the patient. Both patients and clinicians valued the ability to jointly view patient-generated and other data. Preliminary results suggest that MS NeuroShare promotes patient-clinician communication and more active patient participation in decision-making. Lessons learned in the design and implementation of MS NeuroShare are broadly applicable to the design and implementation of digital tools aiming to improve the experience of delivering and receiving high-quality care for complex, neurologic conditions across large health systems.

PIN20 Study on Disease Treatment Preference and Willingness Payment in Hepatitis C Patients

Hepatitis C has become a global public health problem, and the long-term complications have brought great economic burden on patients. In China, the standard of care(SOC) for chronic hepatitis C is pegylated interferon plus ribavirin, which is not very effective and associated with relative high risk of side effects. The arise of direct-acting antivirals (DAAs) has dramatically improved the effectiveness and reduced the incidence of side effects, but they are expensive than SOC at the same time. To study the disease treatment preference and willingness payment for different treatment regimens in Hepatitis C patients using discrete choice experiment(DCE), so as to provide reference for improving the participation of patients in decision-making. Eight attributes related to Hepatitis C were determined by literature review and pre-survey. The probability of occurrence and severity were considered at the same time for the side effects. The orthogonal experimental design was used to generate 32 combinations to form DCE questionnaire. The survey was conducted in Tianjin in December 2018. Effects coding and random parameter logit model was used for data analysis. A total of 111 patients completed the questionnaire, of which 36.04% were male. The preference weight for different attributes was ranked as following: sustained virological response(SVR), nausea/vomiting, rash, insomnia, number of interferon injections, weeks of treatment, tiredness/fatigue and the relative weight was 10.00, 2.12, 1.32, 0.69, 0.32, 0.23 and 0.17, respectively. In terms of willingness payment, patients are willing to pay RMB 33,873 per course of treatment to achieve the highest SVR. From the perspective of patients, efficacy is the most essential criterion to be considered. Side effects and modes of administration also play a certain role in the treatment choice of patients. Furthermore, patients have different evaluations on the probability and severity for the same side effects.