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- Franklin, Patricia D, et al.
(författare)
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Integration of Registries with EHRs to Accelerate Generation of Real-World Evidence for Clinical Practice and Learning Health Systems Research: Recommendations from a Workshop on Registry Best Practices.
- 2020
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Ingår i: The Journal of bone and joint surgery. American volume. - 0021-9355 .- 1535-1386. ; 102:19
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Tidskriftsartikel (refereegranskat)abstract
- A complementary relationship between EHRs and well-designed registries can support multiple uses of real-world data within clinical practice, quality and regulatory compliance, and research. The “collect data once and use many times” principle supports efficiency for clinicians, health systems, and researchers. As the AAOS and other professional societies expand U.S. registries, orthopaedists are in a pivotal position to adopt the best-practice standards outlined above and to encourage patients and hospitals to participate, thereby generating important high-quality information to improve research based on real-world data, inform best practices, and enhance the quality of patient care.
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| 2. |
- Svedbom, Axel, et al.
(författare)
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Quality of life after hip, vertebral, and distal forearm fragility fractures measured using the EQ-5D-3L, EQ-VAS, and time-trade-off : Results from the ICUROS
- 2018
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Ingår i: Quality of Life Research. - : Springer Verlag (Germany). - 1573-2649 .- 0962-9343. ; 27:3, s. 707-716
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: The International Costs and Utilities Related to Osteoporotic fractures Study is a multinational observational study set up to describe the costs and quality of life (QoL) consequences of fragility fracture. This paper aims to estimate and compare QoL after hip, vertebral, and distal forearm fracture using time-trade-off (TTO), the EuroQol (EQ) Visual Analogue Scale (EQ-VAS), and the EQ-5D-3L valued using the hypothetical UK value set. Methods: Data were collected at four time-points for five QoL point estimates: within 2 weeks after fracture (including pre-fracture recall), and at 4, 12, and 18 months after fracture. Health state utility values (HSUVs) were derived for each fracture type and time-point using the three approaches (TTO, EQ-VAS, EQ-5D-3L). HSUV were used to estimate accumulated QoL loss and QoL multipliers. Results: In total, 1410 patients (505 with hip, 316 with vertebral, and 589 with distal forearm fracture) were eligible for analysis. Across all time-points for the three fracture types, TTO provided the highest HSUVs, whereas EQ-5D-3L consistently provided the lowest HSUVs directly after fracture. Except for 13–18 months after distal forearm fracture, EQ-5D-3L generated lower QoL multipliers than the other two methods, whereas no equally clear pattern was observed between EQ-VAS and TTO. On average, the most marked differences between the three approaches were observed immediately after the fracture. Conclusions: The approach to derive QoL markedly influences the estimated QoL impact of fracture. Therefore the choice of approach may be important for the outcome and interpretation of cost-effectiveness analysis of fracture prevention.
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| 3. |
- Van Citters, Aricca D., et al.
(författare)
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Prioritizing Measures That Matter Within a Person-Centered Oncology Learning Health System
- 2022
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Ingår i: JNCI Cancer Spectrum. - : Oxford University Press. - 2515-5091. ; 6:3
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundDespite progress in developing learning health systems (LHS) and associated metrics of success, a gap remains in identifying measures to guide the implementation and assessment of the impact of an oncology LHS. Our aim was to identify a balanced set of measures to guide a person-centered oncology LHS.MethodsA modified Delphi process and clinical value compass framework were used to prioritize measures for tracking LHS performance. A multidisciplinary group of 77 stakeholders, including people with cancer and family members, participated in 3 rounds of online voting followed by 50-minute discussions. Participants rated metrics on perceived importance to the LHS and discussed priorities.ResultsVoting was completed by 94% of participants and prioritized 22 measures within 8 domains. Patient and caregiver factors included clinical health (Eastern Cooperative Oncology Group Performance Status, survival by cancer type and stage), functional health and quality of life (Patient Reported Outcomes Measurement Information System [PROMIS] Global-10, Distress Thermometer, Modified Caregiver Strain Index), experience of care (advance care planning, collaboRATE, PROMIS Self-Efficacy Scale, access to care, experience of care, end-of-life quality measures), and cost and resource use (avoidance and delay in accessing care and medications, financial hardship, total cost of care). Contextual factors included team well-being (Well-being Index; voluntary staff turnover); learning culture (Improvement Readiness, compliance with Commission on Cancer quality of care measures); scholarly engagement and productivity (institutional commitment and support for research, academic productivity index); and diversity, equity, inclusion, and belonging (screening and follow-up for social determinants of health, inclusivity of staff and patients).ConclusionsThe person-centered LHS value compass provides a balanced set of measures that oncology practices can use to monitor and evaluate improvement across multiple domains.
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