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

scholarly journals Using CollaboRATE, a brief patient-reported measure of shared decision making: Results from three clinical settings in the United States

2017 ◽  
Vol 21 (1) ◽  
pp. 82-89 ◽  
Author(s):  
Rachel C. Forcino ◽  
Paul J. Barr ◽  
A. James O'Malley ◽  
Roger Arend ◽  
Molly G. Castaldo ◽  
...  
Keyword(s):  
United States ◽  
Decision Making ◽  
Shared Decision Making ◽  
The United States ◽  
Clinical Settings ◽  
Shared Decision ◽  
Patient Reported

scholarly journals Assessing Shared Decision-Making in Cystic Fibrosis Care Using collaboRATE: A Cross-Sectional Study of 159 Programs

2021 ◽  
Vol 8 ◽  
pp. 237437352110340
Author(s):  
Karen Homa ◽  
Gabrielle Stevens ◽  
Rachel Forcino ◽  
Peter Scalia ◽  
Pamela Mertz ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Decision Making ◽  
Shared Decision Making ◽  
Age Groups ◽  
The United States ◽  
Shared Decision ◽  
Cross Sectional ◽  
Specific Patient ◽  
Adult Programs ◽  
Patient Reported

There are numerous opportunities for shared decision-making (SDM) in cystic fibrosis (CF) care, yet little is known about patients’ SDM experiences. This study evaluated SDM across 159 CF care programs (4024 participants) in the United States. Shared decision-making was assessed using the patient-reported collaboRATE measure, which was included in the CF Foundation’s Patient and Family Experience of Care Survey over 18 months. Overall, 69% of respondents reported experiencing SDM. Respondents at pediatric programs were more likely to experience SDM than those at adult programs (72% vs 67%, P < .001). Multivariable logistic regression analyses showed a relationship between SDM and patient age, whereby SDM was less likely to occur with patients aged 18 to 24 years, compared to some younger and older age groups ( P = .02-<.001). Shared decision-making was more likely to occur at pediatric programs when patients had better general health ( P = .02-<.01), and at pediatric and adult programs when patients had better mental health ( P = .02-<.001). Disparities in SDM experiences highlight a need to improve decision-making processes in CF care. Interventions tailored for improving SDM among specific patient populations may be particularly advantageous.

Prudence in Shared Decision-Making: The Missing Link between the “Technically Correct” and the “Morally Good” in Medical Decision-Making

2020 ◽  
Author(s):  
Paul Muleli Kioko ◽  
Pablo Requena Meana
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Patient Autonomy ◽  
Intellectual Ability ◽  
Medical Decision ◽  
Shared Decision ◽  
Physician Patient Relationship ◽  
Good Healing ◽  
The Right ◽  
Physician Patient

Abstract Shared Decision-Making is a widely accepted model of the physician–patient relationship providing an ethical environment in which physician beneficence and patient autonomy are respected. It acknowledges the moral responsibility of physician and patient by promoting a deliberative collaboration in which their individual expertise—complementary in nature, equal in importance—is emphasized, and personal values and preferences respected. Its goal coincides with Pellegrino and Thomasma’s proximate end of medicine, that is, a technically correct and morally good healing decision for and with a particular patient. We argue that by perfecting the intellectual ability to apprehend the complexity of clinical situations, and through a perfection of the application of the first principles of practical reason, prudence is able to point toward the right and good shared medical decision. A prudent shared medical decision is therefore always in keeping with the kind of person the physician and the patient have chosen to be.

scholarly journals Patient and physician perspectives guiding intra-articular treatment choice in knee osteoarthritis: stakeholders are aligned on treatment priorities but have different assessments of treatment effect

2021 ◽  
pp. jisakos-2020-000578
Author(s):  
Vandana Menon ◽  
Caroline Huber ◽  
Alexandria Portelli ◽  
Marissa Baker-Wagner ◽  
Scott Kelley ◽  
...  
Keyword(s):  
Decision Making ◽  
Knee Osteoarthritis ◽  
Shared Decision Making ◽  
Symptom Relief ◽  
Activity Level ◽  
Shared Decision ◽  
Treatment Needs ◽  
Knee Oa ◽  
Patient Reported ◽  
Selection Factors

ObjectivesKnee osteoarthritis (OA) is a leading cause of health-related disability. In the absence of curative non-operative therapies, treatment goals are limited to symptom relief. Data are limited on how patients and physicians prioritise available treatment options. We assessed patients’ preferences for and physicians’ attitudes towards intra-articular treatments including corticosteroids (IACS), an extended-release corticosteroid (TA-ER) and hyaluronic acids (IAHA).MethodsWe conducted a prospective, IRB-exempt, double-blind survey of patients with and providers who treat knee OA. Respondents were required to have received or prescribed TA-ER in a non-trial setting. We evaluated patients’ OA history, impact of knee OA and treatment preferences, and physicians’ decision-making and prescribing experiences.ResultsOf the 97 patient participants, mean age was 56 years, 70.0% were women, 75.0% had bilateral knee OA and 46.4% were diagnosed over 5 years ago. Of the 50 physician participants, 34.0% were rheumatologists, 42.0% were orthopaedic surgeons and 60.0%, on average, treat 50+ patients with knee OA per month. Treatment selection factors considered ‘very important’ to patients and physicians included disease severity (88.7%, 82.0%), impact on quality of life (88.7%, 72.0%), disease extent (84.5%, 54.0%) and activity level (80.4%, 64.0%). A majority (93.8%) of patients indicated moderate to severe difficulty with their knees. Fewer patients (76.3%) reported shared decision making compared with physicians (92.0%). Half (50.5%) of the patients reported that they experienced months of pain relief with TA-ER, 27.7% with IACS and 18.8% with IAHA. Physician assessments were consistent but estimated a greater duration of treatment effects than that reported by patients across all therapies.ConclusionWhile knee OA has a tremendous impact on patients, there are significant unmet treatment needs. The increasing use of patient-reported outcomes will allow patients and physicians to track pain and functional status over time and across therapies, improving shared decision-making.

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.

Abstract 189: Income Level Disparities in Consumer Reported Domains of Healthcare Experience Among Those With Established Atherosclerotic Cardiovascular Disease in United States: Insights From Medical Expenditure Panel Survey 2010-2013

2017 ◽  
Vol 10 (suppl_3) ◽  
Author(s):  
Victor Okunrintemi ◽  
Erica Spatz ◽  
Joseph Salami ◽  
Paul D Capua ◽  
Haider Warraich ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Medical Expenditure Panel Survey ◽  
Medical Expenditure ◽  
Atherosclerotic Cardiovascular Disease ◽  
Shared Decision ◽  
Panel Survey ◽  
Provider Satisfaction ◽  
Healthcare Experience ◽  
Patient Reported

Background: While it is well established that significant health outcome disparities exist across patients of varying socio-economic status (SES) with established atherosclerotic cardiovascular disease (ASCVD), disparities in patients’ healthcare experiences are not well investigated. We explore income level differences in four central tenets of patient-reported healthcare experience (access to care, provider communication, shared decision making and provider satisfaction) as measured by the Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey, in a nationally representative adult US population with established ASCVD. Methods: The study population consisted of 8223 individuals (age ≥ 18 years) representing 21.6 million with established ASCVD (self-reported or ICD-9 diagnosis) reporting a usual source of care in the 2010-2013 pooled Medical Expenditure Panel Survey (MEPS) cohort. We assessed the responses for each item as: a) difficult access to care (always/almost difficult), b) ineffective communication and shared decision making (never/sometimes), and c) poor provider satisfaction (lowest quartile on a scale of 0-10). We examined the relationship between scores in the lowest quartile of each domain composite scores, derived using the weighted average response from each items scores, with patients’ SES, using the high-income group as reference. Results: Lower SES was consistently associated with greater perceived difficulties in access, poor provider-patient communication, less shared decision making, as well as lower provider satisfaction (Table). Participants classified as poor vs. high income were 47% (95% CI 1.17-1.83) more likely to report difficulty accessing care, 39% (95% CI 1.09-1.78) and 26% (95% CI 0.99-1.60) reported a higher likelihood of experiencing poor communication and shared decision making respectively, as well as a 66% (95% CI 1.31-2.11) higher likelihood of reporting lower provider satisfaction. Conclusion: Among patients with established ASCVD, significant SES disparities exist in all domains of patient reported healthcare experience quality of care metrics. Targeted policies focusing on improving communication, engagement and satisfaction are needed to enhance patient healthcare experience among high-risk vulnerable populations.

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