scholarly journals “All about the money?” A qualitative interview study examining organizational- and system-level characteristics that promote or hinder shared decision-making in cancer care in the United States

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Isabelle Scholl ◽  
Sarah Kobrin ◽  
Glyn Elwyn
Keyword(s):  
Decision Making ◽  
Health System ◽  
Shared Decision Making ◽  
Cancer Care ◽  
The United States ◽  
System Level ◽  
Shared Decision ◽  
Qualitative Interview Study ◽  
The Usa ◽  
System Characteristics

Abstract Background Despite decades of ethical, empirical, and policy support, shared decision-making (SDM) has failed to become standard practice in US cancer care. Organizational and health system characteristics appear to contribute to the difficulties in implementing SDM in routine care. However, little is known about the relevance of the different characteristics in specific healthcare settings. The aim of the study was to explore how organizational and health system characteristics affect SDM implementation in US cancer care. Methods We conducted semi-structured interviews with diverse cancer care stakeholders in the USA. Of the 36 invited, 30 (83%) participants consented to interview. We used conventional content analysis to analyze transcript content. Results The dominant theme in the data obtained was that concerns regarding a lack of revenue generation, or indeed, the likely loss of revenue, were a major barrier preventing implementation of SDM. Many other factors were prominent as well, but the view that SDM might impair organizational or individual profit margins and reduce the income of some health professionals was widespread. On the organizational level, having leadership support for SDM and multidisciplinary teams were viewed as critical to implementation. On the health system level, views diverged on whether embedding tools into electronic health records (EHRs), making SDM a criterion for accreditation and certification, and enacting legislation could promote SDM implementation. Conclusion Cancer care in the USA has currently limited room for SDM and is prone to paying lip service to the idea. Implementation efforts in US cancer care need to go further than interventions that target only the clinician-patient level. On a policy level, SDM could be included in alternative payment models. However, its implementation would need to be thoroughly assessed in order to prevent further misdirected incentivization through box ticking.

scholarly journals Healthcare providers' perceptions of the challenges and opportunities to engage Chinese migrant women in contraceptive counselling: a qualitative interview study

Sexual Health ◽  
2020 ◽  
Vol 17 (5) ◽  
pp. 405
Author(s):  
Hankiz Dolan ◽  
Mu Li ◽  
Deborah Bateson ◽  
Rachel Thompson ◽  
Chun Wah Michael Tam ◽  
...  
Keyword(s):  
Decision Making ◽  
Health System ◽  
Shared Decision Making ◽  
Healthcare Providers ◽  
Shared Decision ◽  
Migrant Women ◽  
Care Needs ◽  
Contraceptive Counselling ◽  
Qualitative Interview Study ◽  
Professional Interpreting

Background In Australia, there are many culturally and linguistically diverse communities and Chinese migrants make up one of the largest. Yet, little is known about healthcare providers’ (HCPs) unique experiences in providing contraceptive care for Chinese migrant women. There is minimal research into the HCPs’ perceptions of challenges or opportunities in engaging Chinese migrant women in informed and shared decision-making processes during contraceptive counselling. The aim of this study is to explore HCPs’ experiences of providing contraceptive care for Chinese migrant women, their perceptions of women’s care needs when choosing contraceptive methods, as well as their own needs in supporting women’s decision-making. Methods: Semi-structured interviews were conducted with 20 HCPs in Sydney, Australia who had substantial experience in providing contraceptive services to Chinese women who were recent migrants. Transcribed audio-recorded data were analysed using thematic analysis. Results: Four main themes were identified, including: ‘Are you using contraception?’: the case for being proactive and opportunistic; ‘Getting the message across’: barriers to communication; ‘Hormones are unnatural?’: women favouring non-hormonal methods; and ‘Word of mouth’: social influence on contraceptive method choice. Conclusions: In order to facilitate informed choice and shared decision-making with Chinese migrant women during contraceptive counselling, broader health system and community-level strategies are needed. Such strategies could include improving HCPs’ cultural competency in assessing and communicating women’s contraceptive needs; providing professional interpreting services and translated materials; and improving women’s health literacy, including their contraceptive knowledge and health system awareness.

scholarly journals Qualitative Examination of Shared Decision-Making in Canada’s Largest Health System: More Work to be Done

2021 ◽  
Vol 8 ◽  
pp. 237437352110641
Author(s):  
Micheal Guirguis ◽  
Erin Thompson ◽  
Jenna Miller ◽  
Ryan Sommer ◽  
Danielle Curran-Cook ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Health System ◽  
Shared Decision Making ◽  
System Level ◽  
Organizational Level ◽  
Shared Decision ◽  
Cross Sectional ◽  
Patient Agency ◽  
Study Results

Background: Shared Decision-Making (SDM) is an inclusive approach where patients and providers work in partnership to make health care decisions that are grounded in clinical best practice and align with patient preferences and values. Despite a growing recognition that SDM can lead to improved outcomes and reductions in unnecessary health investigations, tensions exist between patient agency and a historically paternalistic model of health care. As an evolving ideology, the Research Team sought to better understand the current state, challenges, and implementation opportunities of SDM practices across the health system. Methods: This study used a cross-sectional quality improvement design utilizing semistructured interviews to gather information from focus group participants. Five open-ended, qualitative questions were used to generate discussion on the perceptions of SDM and its role in clinical appropriateness in a variety of clinical contexts in our health system. A total of 12 focus groups (n = 95 participants) representative of patients and families, leaders, physicians, and frontline clinicians were engaged in the study. Results: Through a consensus-based approach, study results identified 4 recommendations based on 4 themes: Time, Communication, System Design, and Clinical Appropriateness. Conclusion: There are no easy solutions to the challenges of enabling SDM; however, success will be dependent upon recognizing the importance of patient agency, while maintaining an inclusive and continuous stakeholder engagement with both patients and providers. Implementation of the 4 recommendations at the organizational level highlighted in this study can serve as a road map for other health care institutions and will require a gradual approach to transform the general principles of SDM into tangible solutions to meet the emerging needs at both the local and system level.

scholarly journals PARE0031 AN MHEALTH TOOL FOR SHARED DECISION MAKING FOR PATIENTS WITH RHEUMATISM AND ARTHRITIS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1301.1-1302
Author(s):  
Y. Koumpouros ◽  
A. Pappa
Keyword(s):  
Rheumatoid Arthritis ◽  
Decision Making ◽  
Health System ◽  
Shared Decision Making ◽  
Design Process ◽  
Patient Empowerment ◽  
The United States ◽  
End Users ◽  
Shared Decision ◽  
Evaluation Phase

Background:Patient empowerment is a key element of patient-centred healthcare according to WHO. In the same direction, the Institute of Medicine in the United States supports actions to engage patients in their health care decision in a new patient-centered care model. Patient-centred care models have demonstrated better quality of care as well as potential long-term cost-efficiencies. However, nowadays, many patients are still struggling to become equal partners in care. Patients with chronic conditions, such as rheumatoid arthritis, are often referred to as the most under-used resource in the health system. Shared decision making is a collaborative process enabling a clinician and patient to participate jointly in making a health decision about the treatment having discussed the options, benefits and harms, while considering also the patient’s values and experiences.Objectives:The objective of the current research was to design a tool that will facilitate the shared decision making regarding the treatment approach, based on real life evidences from the patient. The focus of the application is on the pain assessment of patients suffering from rheumatism and arthritis. The proposed solution utilizes the latest technological innovations to support patients and clinicians on their decisions and assessment strategy on a more accurate base.Methods:The design process followed a user-centered approach by involving a multidisciplinary team of experts (an mHealth expert, a behavioural scientist, and two physicians). An iterative design process focused on the different end-users (patients and clinicians) and their actual needs on the topic concerned. In each phase, the experts involved the end-users to create a highly usable tool. The aim was to capture and address the whole user experience. An evaluation phase took place for three months.Results:The design team brought the users into every stage of the design process. Twenty patients and three physicians (one pathologist, one general surgeon and an expert in pharmacology and clinical pharmacology) participated and evaluated the modules implemented. The final solution consists of an application running on Android operating system in any smart phone. The final application supports the patient to enter all necessary information about: (i) the pain he/she is feeling, (ii) the medication he/she is receiving, and (iii) his/her life style.Conclusion:After a three months period of continuous use of the application from the participants during the evaluation phase, they reported very encouraging results. In terms of usage, the patients found it user friendly, easy to learn, easy to use, and easily accessible. They also consider it really useful in order to keep track of their progress and assess the treatment and medications they receive relevant to the pain they feel. The physicians involved in the evaluation of the application found it very useful and with significant potential for daily use by clinical staff to evaluate the therapies given to their patients. All users concluded that the developed app can help towards a more accurate and acceptable treatment based on shared decision, exploiting the collected evidences.References:[1]Angelmar R, Bermann BP. Patient empowerment and efficient health outcomes. Financing sustainable healthcare in Europe. 2007:139–162.[2]Hargraves IG, Montori VM, Brito JP, et al. Purposeful SDM: A problem-based approach to caring for patients with shared decision making. Patient Education and Counseling. 102(10), 2019, p. 1786-1792.[3]Légaré F, Stacey D, Brière N, et al. Healthcare providers’ intentions to engage in an interprofessional approach to shared decision-making in home care programs: a mixed methods study.J Interprof Care2013; 27: 214-222[4]McWilliams DF, Walsh DA. Pain mechanisms in rheumatoid arthritis. Clin Exp Rheumatol. 2017 Sep-Oct;35 Suppl 107(5):94-101.[5]National Research Council. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academies Press, 2001.[6]Hoffmann TC, Légaré F, Simmons MB, et al. Shared decision making: what do clinicians need to know and why should they bother? Med J Aust 2014; 201 (1): 35-39.Disclosure of Interests:None declared

Co-Design of an Electronic Dashboard to Support Coproduction of Care in Pediatric Rheumatic Disease (Preprint)

2021 ◽  
Author(s):  
Alysha Taxter ◽  
Lisa Johnson ◽  
Doreen Tabussi ◽  
Yukiko Kimura ◽  
Brittany Donaldson ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Clinical Data ◽  
The United States ◽  
Shared Decision ◽  
Time Data ◽  
Vertical Orientation ◽  
Patient Reported ◽  
Data Elements ◽  
The Right

BACKGROUND Coproduction of care involves patients and families partnering with their clinicians and care teams, with the premise that each brings their own perspective, knowledge, and expertise, as well as their own values, goals, and preferences to the partnership. Dashboards can display meaningful patient and clinical data to assess how a patient is doing and inform shared decision making. Increasing communication between patients and care teams is particularly important for children with chronic conditions, such as juvenile idiopathic arthritis (JIA), which is the most common, chronic rheumatic condition of childhood, and is associated with increased pain, decreased function, and decreased quality of life. OBJECTIVE We aimed to design a dashboard prototype for use in coproducing care for JIA patients. We evaluated the context use and needs of end users, obtained consensus on the necessary dashboard data elements, and constructed display prototypes to inform meaningful discussions for coproduction. METHODS A human-centered design approach involving parents, patients, clinicians, and care team members was used to develop a dashboard to support coproduction of care in four diverse ambulatory pediatric rheumatology clinics across the United States. We engaged a multidisciplinary team (n=18) of patients/parents, clinicians, nurses, and staff during an in-person kick-off meeting, followed by bi-weekly meetings. We also leveraged advisory panels. Teams mapped workflows and patient journeys, created personas, and developed dashboard sketches. Final necessary dashboard components were determined using Delphi consensus voting. Low-tech dashboard testing was completed during clinic visits, and visual display prototypes were iterated using PDSA methodology. Patients and providers were surveyed about their experiences. RESULTS Teams achieved consensus on what data matters most at point-of-care to support JIA patients, families, and clinicians partnering together to make the best possible decisions for better health. Notable themes included: the right data, in the right place, at the right time; data in once for multiple purposes; patient and family self-management components; and opportunity for education and increased transparency. A final set of 11 dashboard data elements were identified which include patient-reported outcomes, clinical data, and medications. Important design considerations include incorporation of real-time data, clearly labeled graphs, and vertical orientation to facilitate review and discussion. Prototype paper testing with 36 patients/families yielded positive feedback about the dashboard’s usefulness during clinic discussions, helped to talk about what mattered most, and informed healthcare decision making. CONCLUSIONS Our study developed a dashboard prototype that displays patient-reported and clinical data over time, along with medications, that can be used during a clinic visit to support meaningful conversations and shared decision making between JIA patients/families and their clinicians and care teams. CLINICALTRIAL N/A

How individual ethical frameworks shape physician trainees’ experiences providing end-of-life care: a qualitative study

2021 ◽  
pp. medethics-2020-106690
Author(s):  
Sarah Rosenwohl-Mack ◽  
Daniel Dohan ◽  
Thea Matthews ◽  
Jason Neil Batten ◽  
Elizabeth Dzeng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Shared Decision Making ◽  
End Of Life Care ◽  
The United States ◽  
Ethical Framework ◽  
Shared Decision ◽  
Life Care ◽  
Best Interest ◽  
Ethical Frameworks

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.

scholarly journals An integrated knowledge translation approach to develop a shared decision-making strategy for use by Inuit in cancer care: a qualitative study

2019 ◽  
Vol 26 (3) ◽  
Author(s):  
J. Jull ◽  
A. Hizaka ◽  
A. J. Sheppard ◽  
A. Kewayosh ◽  
P. Doering ◽  
...  
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Knowledge Translation ◽  
Shared Decision Making ◽  
Cancer Care ◽  
Community Support ◽  
Integrated Knowledge Translation ◽  
Shared Decision ◽  
Care Providers ◽  
Integrated Knowledge

Background In relation to the general Canadian population, Inuit face increased cancer risks and barriers to health services use. In shared decision-making (sdm), health care providers and patients make health care decisions together. Enhanced participation in cancer care decisions is a need for Inuit. Integrated knowledge translation (kt) supports the development of research evidence that is likely to be patient-centred and applied in practice.Objective Using an integrated kt approach, we set out to promote the use of sdm by Inuit in cancer care.Methods An integrated kt study involving researchers with a Steering Committee of cancer care system partners who support Inuit in cancer care (“the team”) consisted of 2 theory-driven phases:■ using consensus-building methods to tailor a previously developed sdm strategy and developing training in the sdm strategy; and■ training community support workers (csws) in the sdm strategy and testing the sdm strategy with community members.Results The team developed a sdm strategy that included a workshop and a booklet with 6 questions for use by csws with patients. The sdm strategy (training and booklet) was finalized based on feedback from 5 urban-based Inuit csws who were recruited and trained in using the strategy. Trained csws were matched with 8 community members, and use of the sdm strategy was assessed during interviews, reported as 6 themes. Participants found the sdm strategy to be useful and feasible for use.Conclusions An integrated kt approach of structured research processes with partners developed a sdm strategy for use by Inuit in cancer care. Further work is needed to test the sdm strategy.

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