"Nothing Is More Powerful than Words:" How Patient Experience Narratives Enable Improvement.

Background And Objectives: Patient experience narratives (narratives) are an increasingly important element of both measurement approaches and improvement efforts in healthcare. Prior studies show that narratives are considered by both clinicians and staff to be an appealing, meaningful, and credible form of evidence on performance. They also suggest that making concrete use of narratives within organizational settings to improve care can be complex and challenging.

A qualitative feasibility study of a prototype patient-centered video intervention to increase uptake of cancer genetic testing among Black Americans.

Background: Health advances due to developments in genomic medicine are unequally experienced in the USA; racial differences in the uptake of genetic testing are one factor in this disparity. In collaboration with Black patients and diverse health care providers, we are developing a patient-centered video intervention to increase cancer genetic testing among eligible Black Americans. The objective of the pilot work is to explore the acceptability of and support for the intervention and key content components.

Leveraging Patients' Creative Ideas for Innovation in Health Care.

Unlabelled: Policy Points Patients' creative ideas may inform learning and innovation that improve patient-centered care. Routinely collected patient experience surveys provide an opportunity to invite patients to share their creative ideas for improvement. We develop and assess a methodological strategy that validates question wording designed to elicit creative ideas from patients.

Learning from patients: The impact of using patients' narratives on patient experience scores.

Background: Enthusiasm has grown about using patients' narratives-stories about care experiences in patients' own words-to advance organizations' learning about the care that they deliver and how to improve it, but studies confirming association have not been published.

Purpose: We assessed whether primary care clinics that frequently share patients' narratives with their staff have higher patient experience survey scores.

Approach: We conducted a 1-year study of 5,545 adult patients and 276 staff affiliated with nine clinics in one health system.

"You have to trust yourself": The Overlooked Role of Self-Trust in Coping with Chronic Illness.

Self-trust is essential to the well-being of people with chronic illnesses and those who care for them. In this exploratory essay, we draw on a trove of health narratives to catalyze examination of this important but often overlooked topic. We explore how self-trust is impeded at both personal and structural levels, how it can best be nourished, and how it is related to self-advocacy.

When Mistakes Multiply: How Inadequate Responses to Medical Mishaps Erode Trust in American Medicine.

In this essay, we explore consequences of the systemic failure to track and to publicize the prevalence of patient-safety threats in American medicine. Tens of millions of Americans lose trust in medical care every year due to safety shortfalls. Because this loss of trust is long-lasting, the corrosive effects build up over time, yielding a collective maelstrom of mistrust among the American public.

Gaps in benefits, awareness, and comprehension that leave those with long COVID vulnerable.

Objectives: The COVID-19 pandemic has left many suffering from long COVID, an episodic and debilitating chronic condition affecting people's ability to work and manage medical expenses. Though the Biden Administration has committed to conducting research and building support programs to alleviate the strain on those affected, in practice, static eligibility criteria for unemployment and disability benefits, patchy insurance coverage, and insufficient paid leave programs have left many people vulnerable. Given the magnitude of long COVID and the dearth to date of large-scale studies about its financial consequences, a focused qualitative analysis of lived experiences is warranted to understand and highlight gaps in the policy landscape.

Assessing an innovative method to promote learning from patient narratives: Findings from a field experiment in ambulatory care.

Objective: To assess whether an online interactive report designed to facilitate interpretation of patients' narrative feedback produces change in ambulatory staff learning, behavior at the individual staff and practice level, and patient experience survey scores.

Data Sources And Setting: We studied 22 ambulatory practice sites within an academic medical center using three primary data sources: 333 staff surveys; 20 in-depth interviews with practice leaders and staff; and 9551 modified CG-CAHPS patient experience surveys augmented by open-ended narrative elicitation questions.

Study Design: We conducted a cluster quasi-experimental study, comparing 12 intervention and 10 control sites.

Navigating responsible bio-political citizenship: Cross-country comparison of stigma in Covid-19 illness narratives in Germany, Japan, the UK and the USA.

This paper aims to further understanding of discourses of responsible bio-political citizenship during the first year of the Covid-19 pandemic. This was an interview-based qualitative study comparing experiences of 103 people who were ill with Covid for the first time across 2020 in Japan, Germany, the USA and the UK. Comparative thematic analysis explored discussion of responsibility in relation to Covid illness, experiences of social fracture and stigma, and the strategies employed to resist or mitigate stigma.

Talking about inequities: A comparative analysis of COVID-19 narratives in the UK, US, and Brazil.

Disproportionate mortality and morbidity burdens of the COVID-19 pandemic and coinciding media coverage of public acts of violence perpetrated against people of color in 2020 precipitated reckonings with structural inequities in global, national, and local contexts. This cross-country comparative analysis aims to describe how people voice and make sense race, racism, and privilege in their experiences with COVID-19 infection in the United States, United Kingdom, and Brazil. Anchored by continuous reflection on our individual and collective positionality, we conducted an inductive comparative analysis conceptually situated in intersectionality and critical race theory.

Evaluation of a protocol for eliciting narrative accounts of pediatric inpatient experiences of care.

Objective: To evaluate the measurement properties of a set of six items designed to elicit narrative accounts of pediatric inpatient experience.

Data Sources: Data came from 163 participants recruited from a probability-based online panel of U.S.

Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy.

This analysis of people's accounts of establishing their need and experiences of healthcare for long Covid (LC) symptoms draws on interview data from five countries (UK, US, Netherlands, Canada, Australia) during the first ∼18 months of the Covid-19 pandemic when LC was an emerging, sometimes contested, condition with scant scientific or lay knowledge to guide patients and professionals in their sense-making of often bewildering constellations of symptoms. We extend the construct of candidacy to explore positive and (more often) negative experiences that patients reported in their quest to understand their symptoms and seek appropriate care. Candidacy usually considers how individuals negotiate healthcare access.

Developing catalyst films of health experiences: an analysis of a robust multi-stakeholder involvement journey.

Background: Those whose lives are most directly impacted by health care-patients, caregivers, and frontline staff-are ideally situated to improve patient health care services and care quality. Despite a proliferation of literature on both Patient and Public Involvement (PPI) and clinical quality improvement (QI), concrete strategies regarding how to involve patients remain elusive.

Aim: Research suggests catalyst films, comprised of rigorously-analyzed interview data from diverse patients about their experiences with health and health care ("catalyst films") are a promising way to bring actionable patient feedback to QI.

Parenting Children with Cystic Fibrosis: Developmental Acquisition of Expertise.

Objective: This study was designed to increase our understanding of parents' experiences managing the needs of their children with cystic fibrosis (CF) and to identify potential gaps in services.

Method: We used grounded dimensional analysis of anonymous survey data obtained from a quality improvement initiative conducted by the Cystic Fibrosis Foundation (CFF). The Patient and Family Experience of Care (PFEC) survey was administered continuously at 125 CF care centers throughout the United States in 2017.

Patients' roles in governance of learning: Results from a qualitative study of 16 learning healthcare systems.

Patient and family engagement has been identified as key to fulfilling Learning Healthcare Systems' (LHSs') promise as a model for improving clinical care, catalyzing research, and controlling costs. Little is known, however, about the state of patient engagement in the learning mission of these systems or about what governance structures and processes facilitate such engagement. Here, we report on an interview study of 99 patient and employee leaders in 16 systems.

Polyphonic perspectives on health and care: Reflections from two decades of the DIPEx project.

In this article we consider how an online resource that publishes the findings and video, audio and written extracts from narrative interview studies has developed as an international collaboration, currently including 14 countries worldwide. In the two decades since the initiative was founded, the robust, national qualitative studies for DIPEx International have branched out from patient information and support to learning and teaching, insights and service improvement and cross-national comparisons. Embracing the challenge to reflect plural discourses of illness, health and care in societies that appear increasingly polarised, the DIPEx collaboration presents polyphonic perspectives that stand as potential counters to reductive dualities.

Stumbling Into Adulthood: Learning From Depression While Growing Up.

Depression manifests in distinct ways across the life course. Recent research emphasizes how depression impedes development during emerging adulthood. However, our study-based on 40 interviews with emerging adults from multiple regions in the United States, analyzed following grounded theory-suggests a more complex narrative.

Broadening Medical Students' Exposure to the Range of Illness Experiences: A Pilot Curriculum Focused on Depression Education.

Problem: Exposing medical students to a broad range of illness experiences is crucial for teaching them to practice patient-centered care, but students often have limited interaction with patients with diverse illness presentations.

Approach: The authors developed, implemented, and evaluated a self-directed online curriculum followed by a small-group discussion focused on depression education. The curriculum was based on a module created using the Database of Individual Patients' Experiences methodology.

Qualitative Research on Expanded Prenatal and Newborn Screening: Robust but Marginalized.

If I told you that screening technologies are iteratively transforming how people experience pregnancy and early parenting, you might take notice. If I mentioned that a new class of newborn patients was being created and that particular forms of parental vigilance were emerging, you might want to know more. If I described how the particular stories told about screening in public, combined with parents' fierce commitment to safeguarding their children's health, make it difficult for problematic experiences with screening to translate into negative opinions about it, you would most likely be intrigued.

What Words Convey: The Potential for Patient Narratives to Inform Quality Improvement.

Unlabelled: Policy Points Narratives about patients' experiences with outpatient care are essential for quality improvement because they convey ample actionable information that both elaborates on existing domains within patient experience surveys and describes multiple additional domains that are important to patients. The content of narrative feedback from patients can potentially be translated to improved quality in multiple ways: clinicians can learn from their own patients, groups of clinicians can learn from the experience of their peers' patients, and health system administrators can identify and respond to patterns in patients' accounts that reflect systemic challenges to quality. Consistent investment by payers and providers is required to ensure that patient narratives are rigorously collected, analyzed fully, and effectively used for quality improvement.