Leveraging Patients' Creative Ideas for Innovation in Health Care.

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. Health care organizations should consider how to report and use these data in health care delivery and quality improvement, and policymakers should consider promoting the use of narrative feedback to better understand and respond to patients' experiences. CONTEXT: Learning health systems (LHSs) have been promoted for a decade to achieve high-quality, patient-centered health care. Innovation driven by knowledge generated through day-to-day health care delivery, including patient insights, is critical to LHSs. However, the pace of translating patient insights into innovation is slow and effectiveness inadequate. This study aims to evaluate a method for systematically eliciting patients' creative ideas, examine the value of such ideas as a source of insight, and examine patients' creative ideas regarding how their experiences could be improved within the context of their own health systems. METHODS: The first stage of the study developed a survey and tested strategies for elicitation of patients' creative ideas with 600 patients from New York State. The second stage deployed the survey with the most generative open-ended question sequence within a health care system and involved analysis of 1,892 patients' responses, including 2,948 creative ideas. FINDINGS: Actionable, creative feedback was fostered by incorporating a request for transformative feedback into a sequence of narrative elicitation questions. Patients generate more actionable and creative ideas when explicitly invited to share such ideas, especially patients with negative health care experiences, those from minority racial/ethnic backgrounds, and those with chronic illness. The most frequently elicited creative ideas focused on solving challenges, proposing interventions, amplifying exceptional practices, and conveying hopes for the future. CONCLUSIONS: A valid and reliable method for eliciting creative ideas from patients can be deployed as part of routine patient experience surveys that include closed-ended survey items and open-ended narrative items in which patients share their experiences in their own words. The elicited creative ideas are promising for patient engagement and innovation efforts. This study highlights the benefits of engaging patients for quality improvement, offers a rigorously tested method for cultivating innovation using patient-generated knowledge, and outlines how creative ideas can enable organizational learning and innovation.

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. We used multilevel models to analyze survey data from patients about their experiences and from staff about exposure to useful narratives. We examined staff confidence in own knowledge as a moderator because confidence can influence use of new information sources. RESULTS: Frequency of sharing useful narratives with staff was associated with patient experience scores for all measures, conditional on staff confidence in own knowledge ( p < .01). For operational measures (e.g., care coordination), increased sharing correlated with subsequently higher performance for more confident staff and lower performance or no difference for less confident staff, depending on measure. For relational measures (e.g., patient-provider communication), increased sharing correlated with higher scores for less confident staff and lower scores for more confident staff. CONCLUSION: Sharing narratives with staff frequently is associated with better patient experience survey scores, conditional on confidence in knowledge. PRACTICE IMPLICATIONS: Frequently sharing useful patient narratives should be encouraged as an organizational improvement strategy. However, organizations need to address how narrative feedback interacts with their staff's confidence to realize higher experience scores across domains.

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. Increasing experience with cycles of depression can also catalyze (a) mature perspectives and coping mechanisms that protect against depression's lowest lows; (b) deeper self-knowledge and direction, which in turn promoted a coherent personal identity; and (c) emergence of a life purpose, which fostered attainment of adult roles, skill development, greater life satisfaction, and enriched identity. Our synthesis reveals how depression during emerging adulthood can function at once as toxin, potential antidote, and nutritional supplement fostering healthy development. Our central finding that young adults adapt to rather than recover from depression can also enrich resilience theory, and inform both social discourse and clinical practice.

Improving Patients' Choice of Clinician by Including Roll-up Measures in Public Healthcare Quality Reports: an Online Experiment.

BACKGROUND: Public reports on healthcare quality typically include complex data. To lower the cognitive burden of interpreting these data, some report designers create summary, or roll-up, measures combining multiple indicators of quality into one score. Little is known about how the availability of roll-ups affects clinician choice. OBJECTIVE: To determine how presenting quality scores at different levels of aggregation affects patients' clinician choices. DESIGN: We conducted a simulated clinician-choice experiment, randomizing participants to three versions of a public reporting website and comparing their clinician choices. One version aggregated all clinician-level quality measures into roll-ups, the second provided disaggregated (drill-down) scores only, and the third offered both roll-ups and drill-downs. PARTICIPANTS: Five hundred fifty panelists drawn from a probability-based Internet panel. MAIN MEASURES: We assessed the amount of effort participants exerted by tracking the length of time spent on the website and the number of concrete actions taken on the website (e.g., clicking items). We evaluated decision quality by measuring whether participants selected a clinician who performed more poorly than others and incongruence between participants' stated preferences for dimensions of quality and their chosen clinician's performance on those dimensions. KEY RESULTS: Participants seeing drill-downs alone (mean = 14.9) or with roll-ups (mean = 19.2) took more actions than those who saw roll-ups alone (mean = 10.5) (ps < 0.05). However, participants seeing only drill-downs made poorer choices than those who saw roll-ups alone or with drill-downs. More participants seeing drill-downs chose a clinician who was outperformed (36.3% versus 23.4% [roll-up] and 25.6% [drill-down + roll-up], ps < 0.05) and made choices incongruent with stated preferences (51.2% versus 45.6% [roll-up] and 47.5% [drill-down + roll-up], ps < 0.05). The distinction between roll-up and drill-down was somewhat stronger for sicker participants. CONCLUSIONS: Our results suggest that roll-ups in healthcare quality reports, alone or as a complement to drill-downs, can help patients make better decisions for themselves.

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

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. CONTEXT: For the past 25 years, health care providers and health system administrators have sought to improve care by surveying patients about their experiences. More recently, policymakers have acted to promote this learning by deploying financial incentives tied to survey scores. This article explores the potential of systematically elicited narratives about experiences with outpatient care to enrich quality improvement. METHODS: Narratives were collected from 348 patients recruited from a nationally representative Internet panel. Drawing from the literature on health services innovation, we developed a two-part coding schema that categorized narrative content in terms of (a) the aspects of care being described, and (b) the actionability of this information for clinicians, quality improvement staff, and health system administrators. Narratives were coded using this schema, with high levels of reliability among the coders. FINDINGS: The scope of outpatient narratives divides evenly among aspects of care currently measured by patient experience surveys (35% of content), aspects related to measured domains but not captured by existing survey questions (31%), and aspects of care that are omitted from surveys entirely (34%). Overall, the narrative data focused heavily on relational aspects of care (43%), elaborating on this aspect of experience well beyond what is captured with communication-related questions on existing surveys. Three-quarters of elicited narratives had some actionable content, and almost a third contained three or more separate actionable elements. CONCLUSIONS: In a health policy environment that incentivizes attention to patient experience, rigorously elicited narratives hold substantial promise for improving quality in general and patients' experiences with care in particular. They do so in two ways: by making concrete what went wrong or right in domains covered by existing surveys, and by expanding our view of what aspects of care matter to patients as articulated in their own words and thus how care can be made more patient-centered. Most narratives convey experiences that are potentially actionable by those committed to improving health care quality in outpatient settings.

"Oh, the Places You'll Go" by Bringing Developmental Science Into the World!

Urie Bronfenbrenner and Ernest Boyer argued for leaving the laboratory to conduct rigorous developmental research in the real world where children are found-in the places they go. Contributions to this special issue meet Bronfenbrenner and Boyer's call while at the same time recognizing the continued importance of laboratory research. These articles range from a review of research on the arts to a language intervention in Senegal to large-scale dissemination and intervention projects designed to communicate the best developmental science to families, public agencies, and schools. Together these articles illustrate how we can study development in the world and enrich our work on the factors that promote development. Taking this path presents us with a set of additional hurdles to be addressed, such as how to communicate with the public and how to scale up our interventions in the face of diversity along many dimensions.

Playing With Ideas: Evaluating the Impact of the Ultimate Block Party, a Collective Experiential Intervention to Enrich Perceptions of Play.

Parental attitudes shape play opportunities afforded to children in home, community, and school settings. This study presents evaluation of an intervention designed to enrich parent's conception of play and its relationship with socially valued skills and capacities. On the basis of data from 291 racially and ethnically diverse parents/caregivers of young children (median age between 3 and 6) attending an event in NYC, we find the intervention helped parents conceptualize play in complex ways and altered perceptions of its impact on children's current-but not future-lives. Multivariate analyses reveal the causal pathway for these changes as exposure to multiple play sites, rather than time at the event-a finding with direct implications for exposing parents to developmental science in community settings.

"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. Our qualitative study was designed to explore how middle managers working in a health system's outpatient clinics value and use written narratives in their day-to-day work. METHODS: We conducted qualitative interviews with 20 middle managers working in 8 outpatient clinics. Interviews were fully transcribed, loaded into MAX-QDA software, and coded using thematic analysis techniques. Code reports were extracted and reanalyzed for subthemes related to the objectives of this paper. RESULTS: Middle managers across sites described valuing narratives as a tool to: enable better patient experience assessment by augmenting data from patient experience scores; deepen understanding of and relationships with patients; provide insight about operational issues; identify areas for needed improvement and potential solutions; and facilitate strategic work. They reported using narratives for a range of activities related to their roles as supervisors, such as focusing attention on positive practices and needed improvements, promoting deeper group learning, motivating change, reinforcing sense of purpose for staff, recognizing staff strengths and training needs, and inspiring transformational thinking. Finally, interviewees reported numerous specific quality improvement projects (both short- and longer-term) that were informed by narratives-for example, by identifying an issue to be addressed or by suggesting a workable solution. Together, these interviews suggest a collective "narrative about narratives" woven by these organizational actors-a story which illustrates how narratives are highly relevant for how middle managers derive meaning from their work, put organizational values such as responsive service provision into practice, and enact their roles as supervisors. CONCLUSIONS: Our results add to the nascent literature a detailed description of how narratives can be used both as a tool for middle managers in their leadership and supervisory roles, and as a blueprint for improvement work within outpatient settings. They also illuminate why patient experience scores may improve when narrative data are collected and used. Finally, our results suggest that for middle managers, perhaps "nothing is more powerful than words" because narratives function as both an insight provider and a compelling tool that adds direction and meaning to workplace endeavors.

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. At control sites, narratives were delivered free-form to site administrators via email; at intervention sites, narratives were delivered online with interactive tools for interpretation, accompanied by user training. We assessed control-versus-intervention site differences in learning, behavior, and patient experience scores. DATA COLLECTION: Staff surveys and interviews were completed at intervention and control sites, 9 months after intervention launch. Patient surveys were collected beginning 4 months pre-launch through 9 months post-launch. We used control-versus-intervention and difference-in-difference analyses for survey data and thematic analysis for interview data. PRINCIPAL FINDINGS: Interviews suggested that the interface facilitated narrative interpretation and use for improvement. Staff survey analyses indicated enhanced learning from narratives at intervention sites (29% over control sites' mean of 3.19 out of 5 across eight domains, p < 0.001) and greater behavior change at staff and practice levels (31% and 21% over control sites' means of 3.35 and 3.39, p < 0.001, respectively). Patient experience scores for interactions with office staff and wait time information increased significantly at intervention sites, compared to control sites (3.7% and 8.2%, respectively); however, provider listening scores declined 3.3%. CONCLUSIONS: Patient narratives presented through structured feedback reporting methods can catalyze positive changes in staff learning, promote behavior change, and increase patient experience scores in domains of non-clinical interaction.

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. METHODS: In order to create a patient-centered video intervention prototype, we conducted a targeted, secondary analysis of 47 coded transcripts from video-taped qualitative interviews with people with a known genetic or inherited cancer risk. The review focused on decision-making, testing experiences, and perceived value of genetic testing. We subsequently generated a 15-min video montage of content from 9 diverse (age, gender, race) participants. We used the prototype video as prompt material for semi-structured interviews with 10 Black patients who had undergone genetic testing in the last 2 years and 10 racially diverse providers (genetic counselors, a nurse, and medical oncologists) who provide management recommendations for high-risk patients. Interviews sought to understand the acceptability of a video intervention to enhance informed decision-making by Black patients and key elements for intervention efficacy. RESULTS: Study participants were generally positive about the prototype video and provided guidance for intervention development. Interviewed patients prioritized perceived authenticity and relatability of video participants. The presentation of patients' perspectives on testing, their experiences of testing, and the benefits of having test results were all seen as useful. The benefits of testing for self and family were identified as important considerations. Privacy concerns and science skepticism were identified as germane issues, with guidance to present barriers to testing alongside possible solutions. The inclusion of clinicians was seen as potentially useful but with caution that clinicians are not universally trusted. CONCLUSIONS: Study findings provided critical input for the creation of a professionally produced, tailored intervention video for a randomized clinical trial with Black Americans to evaluate the influence on uptake of genetic testing. The interviews suggest the acceptability and potential utility of an authentic, realistic, and tailored, patient-centered video intervention to increase consideration and uptake of genetic testing.

The heart of patient-centered care.

This article examines the multiple aspirations and practices subsumed under the rubric "patient-centered care." Clarifying the term's meaning is essential to understanding its impact on policy discourse and health care.

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. Yet no one seems to notice that patient safety is a root cause, because no one is counting. In addition to identifying the origins of this purblindness, we offer an alternative policy approach. This would call for government to transparently track safety threats through the systematic collection and reporting of patients' experiences. This alternative strategy offers real promise for stemming the erosion of trust that currently accompanies patient-safety shortfalls while staying consistent with Americans' preferences for a constrained government role with respect to medical care.

"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. Because people's ability to trust themselves is intrinsically linked to the trust others have in them, we pay particular attention to the role that allies such as clinical professionals play in the development of self-trust, highlighting the importance of eliciting patient narratives, of curious listening, and of compassionately raising questions. We also contrast the self-trust paradigm with that of self-management, which tends to replace the former's attention to patients' experiences, abilities, qualities, or judgments with a professionally dominated discourse dedicated to addressing illness through behavior changes prescribed by clinicians. We close with a call to action, exhorting readers to focus on supporting self-trust in health care settings and on creative research in this critical yet heretofore underrepresented domain.

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. METHODS: We conducted in-depth semi-structured interviews from 2020 to 2022 with 25 people with experience of long COVID living predominately in the Midwest. RESULTS: Our inductive analysis revealed ways people became financially exhausted by uncertain medical care costs and precarious employment that left them trying, often alone, to access benefits. People described both experiences with workplace benefits and attempts to access federal benefits to address unstable employment situations created by protracted and uncertain functional impairments. DISCUSSION: We explore pre- and post-pandemic era unemployment, disability, and insurance policies and offer recommendations for better supporting people with long COVID.

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. This comparative analysis highlighted significant similarities across countries. We identified three mysteries of Covid illness experiences that impacted the work of navigating biopolitical citizenship. First, the mystery of how people caught Covid. There was an inherent paradox of following guidance yet nonetheless falling ill. Disclosure of Covid to minimise onward transmission was held in tension with accusations of irresponsibility. Second, the mystery of onward transmission. Uncertainty about transmission placed participants in a liminal space of potentially having caused harm to others. Third, the mystery of how long illness should last. Uncertainty about ongoing infectiousness made social re-entry difficult, particularly in instances of persistent symptoms. We demonstrate the instability of certainty in the context of new and emerging forms of biopolitical citizenship. Guidance and emerging scientific evidence sought to demystify Covid through providing certainty that could guide responsible actions, but where citizens experienced paradoxes this had the potential to exacerbate stigma.

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. adults. Participants were family members of a child who had an overnight hospital stay in the past 12 months. STUDY DESIGN: Cross-sectional survey with follow-up phone interviews. DATA COLLECTION/EXTRACTION METHODS: Participants completed an online (n = 129) or phone (n = 34) survey about their child's hospitalization experience. The survey contained closed-ended items from the Child Hospital Consumer Assessment of Healthcare Providers and Systems (Child HCAHPS) survey, followed by the six narrative items. Approximately 2 weeks after completing the survey, 47 participants additionally completed a one-hour, semi-structured phone interview, the results of which served as a "gold standard" for evaluating the fidelity of narrative responses. Qualitative content analysis was used to code narrative and interview responses for domains of patient experience and actionability. PRINCIPAL FINDINGS: The average narrative was 248 words (SD = 319). Seventy-nine percent of narratives mentioned a topic included in the Child HCAHPS survey; 89% mentioned a topic not covered by that survey; and 75% included at least one detailed description of an actionable event. Overall, there was 66% correspondence between narrative and interview responses. Correspondence was higher on the phone than in the online condition (75% vs. 59%). CONCLUSIONS: Narratives elicited from rigorously designed multi-item sets can provide detailed, substantive information about pediatric inpatient experiences that hospitals could use to improve child and family experiences during pediatric hospitalization. They add context to closed-ended survey item responses and provide information about experiences of care important to children and families that are not included in quantitative surveys.

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. We argue a crucial step preceding individual claims to candidacy is recognition of their condition through generation of collective candidacy. "Vanguard patients" collectively identified, named and fought for recognition of long Covid in the context of limited scientific knowledge and no established treatment pathways. This process was technologically accelerated via social media use. Patients commonly experienced "rejected" candidacy (feeling disbelieved, discounted/uncounted and abandoned, and that their suffering was invisible to the medical gaze and society). Patients who felt their candidacy was "validated" had more positive experiences; they appreciated being believed and recognition of their changed lives/bodies and uncertain futures. More positive healthcare encounters were described as a process of "co-experting" through which patient and healthcare professional collaborated in a joint quest towards a pathway to recovery. The findings underpin the importance of believing and learning from patient experience, particularly vanguard patients with new and emerging illnesses.