scholarly journals Opportunities and challenges to advance the use of electronic patient-reported outcomes in clinical care: a report from AMIA workshop proceedings

JAMIA Open ◽  
2019 ◽  
Vol 2 (4) ◽  
pp. 407-410
Author(s):  
Elizabeth Austin ◽  
Cynthia LeRouge ◽  
Andrea L Hartzler ◽  
Arlene E Chung ◽  
Courtney Segal ◽  
...  
Keyword(s):  
Human Factors ◽  
Health Systems ◽  
Patient Reported Outcomes ◽  
Data Science ◽  
Care Delivery ◽  
Clinical Care ◽  
Healthcare Delivery ◽  
Patient Centered ◽  
Patient Reported ◽  
Interactive Workshop

Abstract Despite the demonstrated value of patient-centered care, health systems have been slow to integrate the patient’s voice into care delivery through patient-reported outcomes (PROs) with electronic tools. This is due in part to the complex interplay of technology, workflow, and human factors that shape the success of electronic PROs (ePROs) use. The 2018 American Medical Informatics Association Annual Symposium served as the setting for a half-day interactive workshop with diverse stakeholders to discuss proposed best practices for the planning, design, deployment, and evaluation of ePROs. We provide this collective commentary that synthesizes participant feedback regarding critical challenges that prohibit the scale and spread of ePROs across healthcare delivery systems, including governance and leadership, workflow and human factors, informatics, and data science. In order to realize the promise of ePROs at scale, adaptable approaches are critical to balance the needs of individual users with health systems at large.

scholarly journals Using Patient-Reported Outcomes to Assess Healthcare Quality: Toward Better Measurement of Patient-Centered Care in Cardiovascular Disease

2021 ◽  
pp. e1-e9
Author(s):  
Raul Angel Garcia ◽  
John A Spertus
Keyword(s):  
Health Status ◽  
Patient Reported Outcomes ◽  
Health Management ◽  
Clinical Care ◽  
Healthcare Quality ◽  
Patient Centered Care ◽  
Patient Centered ◽  
Patient Reported ◽  
Centered Care

Patient-reported outcomes (PROs) are elicited directly from patients so they can describe their overall health status, including their symptoms, function, and quality of life. While commonly used as end points in clinical trials, PROs can play an important role in routine clinical care, population health management, and as a means for quantifying the quality of patient care. In this review, we propose that PROs be used to improve patient-centered care in the treatment of cardiovascular diseases given their importance to patients and society and their ability to improve doctor- provider communication. Furthermore, given the current variability in patients’ health status across different clinics and the fact that PROs can be improved by titrating therapy, we contend that PROs have a key opportunity to serve as measures of healthcare quality.

scholarly journals Care for a Patient With Cancer As a Project: Management of Complex Task Interdependence in Cancer Care Delivery

2016 ◽  
Vol 12 (11) ◽  
pp. 1101-1113 ◽  
Author(s):  
Julia R. Trosman ◽  
Ruth C. Carlos ◽  
Melissa A. Simon ◽  
Debra L. Madden ◽  
William J. Gradishar ◽  
...  
Keyword(s):  
Project Management ◽  
Cancer Care ◽  
Patient Reported Outcomes ◽  
Early Stage ◽  
Care Delivery ◽  
Task Interdependence ◽  
Patient Centered ◽  
Patient Reported ◽  
Future Patient

Cancer care is highly complex and suffers from fragmentation and lack of coordination across provider specialties and clinical domains. As a result, patients often find that they must coordinate care on their own. Coordinated delivery teams may address these challenges and improve quality of cancer care. Task interdependence is a core principle of rigorous teamwork and is essential to addressing the complexity of cancer care, which is highly interdependent across specialties and modalities. We examined challenges faced by a patient with early-stage breast cancer that resulted from difficulties in understanding and managing task interdependence across clinical domains involved in this patient’s care. We used team science supported by the project management discipline to discuss how various task interdependence aspects can be recognized, deliberately designed, and systematically managed to prevent care breakdowns. This case highlights how effective task interdependence management facilitated by project management methods could markedly improve the course of a patient’s care. This work informs efforts of cancer centers and practices to redesign cancer care delivery through innovative, practical, and patient-centered approaches to management of task interdependence in cancer care. Future patient-reported outcomes research will help to determine optimal ways to engage patients, including those who are medically underserved, in managing task interdependence in their own care.

scholarly journals Patient-Reported Outcomes Measures: An Introduction for Clinicians

2019 ◽  
Vol 4 (1) ◽  
pp. 8-15 ◽  
Author(s):  
Kathryn Yorkston ◽  
Carolyn Baylor
Keyword(s):  
Instrument Development ◽  
Patient Reported Outcomes ◽  
Outcome Measurement ◽  
Communication Disorders ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Centered ◽  
Outcomes Measures ◽  
Patient Reported ◽  
Measurement Tools

Patient-reported outcome measures contain information that comes directly from the patient without interpretation by anyone else. These measures are an important part of a clinicians' arsenal of assessment approaches and are critical in the development of patient-centered approaches to intervention. In this introduction to patient-reported outcome measurement tools, a history is provided of this approach to measurement and its place within the context of clinical research and practice. The process of instrument development and application will be reviewed, along with examples of measurement tools from the field of neurological communication disorders. This introduction is supplemented by references that provide interested readers with more detailed information.

scholarly journals A Real-World Rheumatology Registry and Research Consortium: The German RHADAR Registry (Preprint)

2021 ◽  
Author(s):  
Stefan Kleinert ◽  
Peter Bartz-Bazzanella ◽  
Cay von der Decken ◽  
Johannes Knitza ◽  
Torsten Witte ◽  
...  
Keyword(s):  
Real World ◽  
Patient Reported Outcomes ◽  
Closed Loop ◽  
Musculoskeletal Diseases ◽  
Closed Loop System ◽  
Real World Data ◽  
Patient Centered ◽  
Patient Reported ◽  
Integrated Medical Care ◽  
Research Consortium

UNSTRUCTURED Real-world data is crucial to continuously improve patients' management with rheumatic and musculoskeletal diseases (RMD). The German RHADAR registry encompasses a network of rheumatologists and researchers in Germany providing pseudonymized real-world patient data and allowing a timely and continuous improvement in RMD patients' care. The RHADAR modules allow automated anamnesis and adaptive coordination of appointments regarding individual urgency levels. Further modules focus on the collection and integration of electronic patient-reported outcomes in between consultations. The digital RHADAR modules ultimately allow a patient-centered, adaptive approach to integrated medical care starting as early as possible in the disease course. Such a closed-loop system consisting of various modules along the whole patient pathway enables comprehensive and timely patient management in an unprecedented manner.

Patient-Centered Palliative Care for Patients With Advanced Lung Cancer

2022 ◽  
Author(s):  
Jennifer S. Temel ◽  
Laura A. Petrillo ◽  
Joseph A. Greer
Keyword(s):  
Lung Cancer ◽  
Palliative Care ◽  
Checkpoint Inhibitors ◽  
Care Delivery ◽  
Cancer Therapeutics ◽  
Evidence Base ◽  
Advanced Lung Cancer ◽  
Care Needs ◽  
Patient Centered ◽  
Patient Reported

The evidence base demonstrating the benefits of an early focus on palliative care for patients with serious cancers, including advanced lung cancer, is substantial. Early involvement of specialty-trained palliative care clinicians in the care of patients with advanced lung cancer improves patient-reported outcomes, such as quality of life, and health care delivery, including hospice utilization. Since the time that many of these palliative care trials were conducted, the paradigm of cancer care for many cancers, including lung cancer, has changed dramatically. The majority of patients with advanced lung cancer are now treated with immune checkpoint inhibitors or targeted therapies, both of which have had a significant impact on patient's experience and outcomes. With this changing landscape of lung cancer therapeutics, patients are facing new and different challenges, including dealing with novel side effect profiles and coping with greater uncertainty regarding their prognosis. Patients who are living longer with their advanced cancer also struggle with how to address survivorship issues, such as sexual health and exercise, and decision making about end-of-life care. Although palliative care clinicians remain well-suited to address these care needs, they may need to learn new skills to support patients treated with novel therapies. Additionally, as the experience of patients with advanced lung cancer is becoming more varied and individualized, palliative care research interventions and clinical programs should also be delivered in a patient-centered manner to best meet patient's needs and improve their outcomes. Tailored and technology-based palliative care interventions are promising strategies for delivering patient-centered palliative care.

Health Literacy and Patient -Reported Outcomes

2018 ◽  
pp. 109-123 ◽  
Author(s):  
Maria Irene Bellini ◽  
Andre Kubler
Keyword(s):  
Patient Reported Outcomes ◽  
Assessment Tool ◽  
Quality Care ◽  
Care Quality ◽  
Negative Effects ◽  
Patient Centered ◽  
Subjective Data ◽  
Care Plans ◽  
Patient Reported ◽  
Satisfaction Rates

Modern healthcare needs to identify parameters for high-quality care. Quality improvement is the key for advancing in healthcare, and the new assessment tool shifts from a disease-centered outcome to a patient-centered outcome. Clinical outcome such as morbidity and mortality are directly connected and interdependent from patient-reported outcomes: well-informed patients who decide with their healthcare provider what treatment is best for them have better outcomes and higher patient satisfaction rates. These subjective data collected by rigorous, meaningful, and scientific methods and presented in a utilizable format can be used to create care objectives towards which both the surgeon and their patient can travel. Time has come to carry patient-centered outcomes from research into decision making and daily care plans. This chapter outlines a focus beyond life-prolonging therapy, aiming to minimize the negative effects of treatment, optimize quality of life, and align medical decisions with patient expectations.

Decentralisation and Health Systems Performance in Developing Countries

2011 ◽  
pp. 1115-1139
Author(s):  
Adebusoye A. Anifalaje
Keyword(s):  
Developing Countries ◽  
Health Systems ◽  
Care Delivery ◽  
Healthcare Delivery ◽  
Analytical Models ◽  
Top Down ◽  
Decision Space ◽  
Primary Health ◽  
Health Systems Performance ◽  
Administrative Structures

This article attempts to elucidate the intricacies of primary health care delivery in Nigeria. Among myriad complexities, the central proposition made herein is that the absence of an effective regulatory and enforcement framework in developing countries results in a prominent informal decision space. The findings show that the prominence of an informal decision space compromises the objectives of an information-based public health system. The article concludes that decentralisation in developing countries must have a coordinated top-down and bottom-up development component for it to be effective in improving the performance of primary health systems. One of the implications of the study is that researching decentralised healthcare delivery requires analytical models which are able to illuminate the complexities of local accountability in developing countries. The study also reveals the need to further research the dynamics of democratic decentralisation in developing countries as this goes beyond administrative structures but involve socio-cultural institutions.

Moving from a ‘One Size Fits All’ to Personalized Follow-Up in Breast Cancer Survivors—Connecting Patient-Reported Outcomes with Economic Considerations

2019 ◽  
pp. 307-316
Author(s):  
Carmen Dirksen ◽  
Merel Kimman ◽  
Manuela Joore ◽  
Liesbeth Boersma
Keyword(s):  
Breast Cancer ◽  
Economic Evaluation ◽  
Patient Reported Outcomes ◽  
Care Delivery ◽  
Process Of Care ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Economic Considerations

Abstract: In the Netherlands, two studies were performed to investigate the effectiveness of several alternative follow-up strategies in terms of patient-reported outcomes (health-related quality of life and satisfaction), and to address economic considerations in breast cancer follow-up care. This chapter describes the economic evaluation of four follow-up strategies after breast cancer treatment. As such, it provides an example of the application of economic methods to evaluate the relative value of breast cancer care. Whereas economic evaluation is outcome-focused, the process of care delivery is also a major determinant of patient value. Insight into patients’ preferences for outcome and process is crucial in order to tailor care to individual patients’ needs. Therefore, in a second study, patients’ preferences for the process of care delivery were evaluated.

Dare voce ai pazienti nella ricerca sulle malattie rare e sui famaci orfani / Giving patients a voice in the rare diseases and orphan drugs research

2018 ◽  
Vol 67 (1) ◽  
pp. 25-40
Author(s):  
Elena Mancini ◽  
Roberta Martina Zagarella
Keyword(s):  
Clinical Trials ◽  
Rare Diseases ◽  
Patient Reported Outcomes ◽  
Narrative Medicine ◽  
Orphan Drugs ◽  
New Drugs ◽  
Patient Centered ◽  
Patient Reported ◽  
Critical Issues ◽  
The Impact

L’articolo ha l’obiettivo di mettere in luce potenzialità e criticità dell’inclusione della prospettiva dei pazienti nella ricerca sulle malattie rare e sui farmaci orfani. A tal fine, nella prima parte, si propone un’analisi epistemologica dell’utilizzo dei racconti dell’esperienza individuale della malattia nella ricerca scientifica e nei trial clinici, facendo emergere, anche attraverso gli strumenti della medicina narrativa, le sfide teoriche e operative poste dall’inclusione della soggettività del paziente e del vissuto di malattia nonché l’importanza della valorizzazione della prospettiva del paziente, sia in generale sia nella ricerca sulle malattie rare e sui farmaci orfani. Nella seconda parte, il testo analizza in particolare il ruolo degli esiti riportati dai pazienti o Patient Reported Outcomes (PROs), misure per la valutazione complessiva della salute basate sulla prospettiva dei pazienti stessi, incentrandosi sulla sperimentazione clinica nel campo delle malattie rare. In questo contesto, infatti, i racconti di malattia, raccolti e valorizzati da fonti istituzionali e associazioni di pazienti, hanno contribuito a far emergere importanti questioni critiche e difficoltà nell’impiego di outcome centrati sul paziente nello sviluppo di nuovi farmaci e trattamenti, generando una serie di documenti e raccomandazioni relative al loro utilizzo per il benessere della comunità dei malati rari. ---------- This paper aims to highlight the potentiality and criticality of including patients’ perspective in rare diseases and orphan drugs research. In the first part, we propose an epistemological analysis of individual narrations of disease experience as they are used in scientific research and clinical trials. With the help of narrative medicine approach, this analysis points out theoretical and operational challenges of a perspective that includes patient’s subjectivity and illness experience. Furthermore, it reveals the significance of patients’ standpoints in general and in rare diseases as well as in the orphan drugs research. The second part of our article focuses on the role of the Patient reported Outcomes (PROs) – which are measures for the health’s overall assessment based on patient’s perspective – by investigating the impact on clinical trials for rare diseases. In this context, illness stories, which are collected and promoted by institutional sources and patients’ associations, contribute to underline important critical issues at stake in the employment of patient-centered outcomes both in new drugs and in the treatments development. Moreover, these stories are crucial to elaborate documents and recommendations concerning the use of PROs for the rare patients’ community welfare.

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