Listening to the Patient Voice and Learning from the Patient Experience

The amount of data available to health-care institutions regarding the patient care experience has grown tremendously. Purposeful approaches to condensing, interpreting, and disseminating these data are becoming necessary to further understand how clinical and operational constructs relate to patient satisfaction with their care, identify areas for improvement, and accurately measure the impact of initiatives designed to improve the patient experience. We set out to develop an analytic reporting tool deeply rooted in the patient voice that would compile patient experience data obtained throughout the medical center.

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Giving Voice to Patients Through Interviews and Qualitative Analysis- A Pilot Study

10.1101/2020.03.16.20030684 ◽

2020 ◽

Author(s):

Matthew H Loxton ◽

Ebele Okoli

Keyword(s):

Patient Safety ◽

Patient Experience ◽

Patient Perspective ◽

Patient Experiences ◽

Qualitative Approach ◽

Patient Journey ◽

Patient Voice ◽

Patient Goals ◽

Care Processes ◽

Operational Metrics

AbstractModern healthcare is drowning in data, and burdened by quality, safety, financial, and operational metrics, but few relate directly to how patients experiences their care. This has a direct bearing on patient safety, and whether the care they receive meets their needs and goals. As such, a key concept in quality management, is to view all processes in terms of whether, and to what degree, these meet patient goals. However, the literature lacks sufficient specificity on how care processes are seen through the eyes of the patient. A thick account of patient experience of their care processes could provide us with a typology of what patients are seeing, how they conceptualize what they experience, and what risks, issues, and opportunities they can express.To fill a gap in awareness of the patient experience of the radiology processes, we used a mixed methods qualitative approach to elicit the patient view of their radiology experiences, and attempt to develop a typology and insights from the patient voice. We developed a typology of patient experiences of the radiology processes that centered on communication gaps, and reflected opacity, fragility, and unpredictability of administrative and care processes in radiology. Although care and administrative processes were described by participants as well-executed in isolation, from a patient perspective, processes frequently failed to interconnect efficiently or effectively, and did not work well as an end-to-end patient journey. Care processes were described by participants as fragile, solitary, and opaque, and required constant vigilance, supervision, and assistance by patients. Participants described a need for improved communication between radiology staff and patients that focuses on the patient journey and helps to identify and mitigate causes of process opacity and fragility

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MON-630 Elevating the Patient Voice in Type 1 Diabetes Clinical Trials: A Comparison of In-Depth Exit Interviews and Diabetes-Specific Questionnaires

Journal of the Endocrine Society ◽

10.1210/jendso/bvaa046.1290 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

Author(s):

Claire Ervin ◽

Vijay N Joish ◽

Colleen Castro ◽

Dana DiBenedetti ◽

Emily Evans ◽

...

Keyword(s):

Quality Of Life ◽

Clinical Trials ◽

Type 1 Diabetes ◽

Literature Review ◽

Patient Experience ◽

Exit Interviews ◽

Patient Voice ◽

Pro Instruments

Abstract Healthcare decisions are more effective when the patient voice is included in clinical research, and the Food and Drug Administration encourages the patient’s voice in drug development and regulatory decision-making. Clinical trials should not only demonstrate the effect of a drug on clinical outcomes but should also demonstrate that these outcomes are important or meaningful to patients. Several qualitative and quantitative methods are available to collect patient experience data (e.g., traditional patient-reported outcome [PRO] measures, interviews with clinical trial participants). We aimed to understand if in-depth exit interviews were more effective assessments of the patient experience in recent type 1 diabetes (T1D) clinical trials than existing diabetes-specific PROs. In-depth qualitative interviews were conducted with 41 adults with T1D who had completed or withdrew from a phase 3 study of sotagliflozin, a dual inhibitor of SGLT1 and SGLT2. A targeted literature review was conducted to identify diabetes-specific PROs used in randomized controlled clinical trials of novel T1D medications reported over the past 5 years. Included trials had to investigate a pharmaceutical intervention for adults with T1D and report a diabetes-specific PRO. The concepts assessed in the PRO measures were mapped against those elicited during the 41 exit interviews. A total of 336 publications were identified in the literature search of which 26 were eligible for analysis. Eight diabetes-specific PROs were identified and reviewed from which 54 concepts related to the patient experience were identified. The patient exit interviews included 42/54 (78%) of the patient experience-related concepts identified across all 8 PROs from the literature review. Of the 8 PRO instruments, the Diabetes Quality of Life Measure (DQOL) covered the most concepts (18/54, 33%), followed closely by the Audit of the Diabetes-Dependent Quality of Life (ADDQoL; 16/54, 30%). Some of the most prominent concepts from both approaches were related to impact on life and family; fear of complications; and impact on physical activity, lifestyle and social perceptions. There were several concepts identified in the exit interviews that were not covered in any of the 8 PRO instruments (related to keeping blood sugars within a desired range, ability to manage changes in insulin use). Overall, the exit interviews appeared to provide a more comprehensive picture of patient experience domains. Although existing diabetes PRO measures cover a range of concepts and may adequately assess changes in certain outcomes, data from patient exit interviews provide more comprehensive insights into the patient experience. Exit interview data may provide a more detailed understanding of the disease burden and impact of treatment on improvements in well-being, daily functioning, and treatment satisfaction.

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PATIENT: A Tool to Assist in Creating a Patient-Centered Team Approach to Health-Care Delivery: Lessons From a Physician Patient

Journal of Patient Experience ◽

10.1177/2374373518812048 ◽

2018 ◽

Vol 7 (1) ◽

pp. 16-18

Author(s):

Lynn C Ashdown

Keyword(s):

Health Care ◽

Health Care System ◽

Patient Experience ◽

Health Care Delivery ◽

Health Care Professionals ◽

Care Delivery ◽

Team Approach ◽

Patient Centered ◽

Patient Voice ◽

Physician Patient

Working as a physician, I believed that health care was patient focused and that patients were active participants in their own care. A few years ago, I started a lengthy and complex journey of my own as a patient, whereby I was awakened to the fact that the health-care system does not value the patient voice nor are they included in their care. I found myself having a unique perspective, whereby I understood health-care delivery from my work as a physician; but I also understood now the patient’s perspective in great detail. I know that the patient’s voice is an invaluable asset in health care. Knowing what I now know, I have begun giving presentations about the patient experience to health-care professionals. I developed the acronym ‘PATIENT,’ to educate health-care professionals with the necessary tools to help evolve health-care delivery to the patient-centered team approach.

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Abstract #1086: Patient Experience with Severe Low Energy Following Total Thyroidectomy for Papillary Thyroid Cancer

Endocrine Practice ◽

10.1016/s1530-891x(20)44216-8 ◽

2017 ◽

Vol 23 ◽

pp. 258

Author(s):

Elizabeth Wendt ◽

Maria Bates ◽

Reese Randle ◽

Jason Orne ◽

Cameron Macdonald ◽

...

Keyword(s):

Thyroid Cancer ◽

Total Thyroidectomy ◽

Papillary Thyroid Cancer ◽

Patient Experience ◽

Low Energy ◽

Papillary Thyroid

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Self-administration of mepolizumab via an autoinjector: the patient experience

10.1055/s-0039-3403116 ◽

2020 ◽

Author(s):

LA Evitt ◽

R Follows ◽

JH Bentley ◽

W Williams ◽

R von Maltzahn

Keyword(s):

Patient Experience ◽

Self Administration

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Patient experience of primary care

10.3310/highlight-001669 ◽

2017 ◽

Author(s):

Keyword(s):

Primary Care ◽

Patient Experience

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Gaining patient experience insights

Conference Proceedings of the Academy for Design Innovation Management ◽

10.33114/adim.2019.05.253 ◽

2019 ◽

Vol 2 (1) ◽

Author(s):

Maitane GARCÍA-LÓPEZ ◽

Ester VAL ◽

Ion IRIARTE ◽

Raquel OLARTE

Keyword(s):

Type 1 Diabetes ◽

Patient Experience ◽

Patient Perspective ◽

Continuum Of Care ◽

Theoretical Framework ◽

Cognitive Responses ◽

The Continuum

Taking patient experience as a basis, this paper introduces a theoretical framework, to capture insights leading to new technological healthcare solutions. Targeting a recently diagnosed type 1 diabetes child and her mother (the principal caregiver), the framework showed its potential with effective identification of meaningful insights in a generative session. The framework is based on the patient experience across the continuum of care. It identifies insights from the patient perspective: capturing patients´ emotional and cognitive responses, understanding agents involved in patient experience, uncovering pain moments, identifying their root causes, and/or prioritizing actions for improvement. The framework deepens understanding of the patient experience by providing an integrated and multi-leveled structure to assist designers to (a) empathise with the patient and the caregiver throughout the continuum of care, (b) understand the interdependencies around the patient and different agents and (c) reveal insights at the interaction level.

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