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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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Policy PointsPatients' 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. To date, such films have been crafted primarily by researchers. This project aimed to inform the science of engagement through analyzing how deliberate PPI informed the process of creating catalyst films. Methods: PPI methods included: research team norming activities through a project charter and role delineation process; key informant interviews; participant-ambassador videotaped interviews; clinician and research focus groups; and inclusion of advisors on the research team. Content studied for the analysis presented here included team meeting notes, interview and focus group transcripts, and documentation from a facilitated discussion about team processes. These data were analyzed to determine the impact of our PPI process. Member checking verified themes and lessons learned. Results: PPI shaped team deliberations and final products in substantial ways, including: what material to include in catalyst films and the tone they should convey; multiple issues regarding representation; and our collective understanding of how catalyst films could be used in the United States. Specific discussions addressed: how to include the optimal mix of interview segments that describe experiences with those that more directly point towards care improvement strategies; and how to balance positive and negative feedback from patients about experiences with care. Team process issues included ensuring equity in involvement despite team members having differing and sometimes multiple roles that complicated power dynamics and processes. Conclusions: Multiple forms and degrees of PPI resulted in significant influence on catalyst films and companion materials. Our project thus provides proof of concept for PPI in creation of video products for QI which have traditionally been crafted by researchers. The model we developed, and document in this paper, can be adapted by others creating research-derived video products. Our findings can also inform future research on how co-designing catalyst films enhances their value for QI and the application of co-designed catalyst film use in QI. Lastly, it can guide those engaged in QI and medical education in their selection of film products focused on patient experiences. Plain English Summary: Involving patients in care improvement efforts is valuable for improving the quality and safety of health care services because patients offer unique insights and are directly impacted by the system. Involving patients in these efforts can also inform better patient and family experiences. Studies have shown that using video interviews highlighting good and bad patient experiences in healthcare is one of the promising way to include a wider range of patient narratives and feedback in care improvement. Videos used in these situations are now called catalyst films, formerly known as trigger films. This paper describes how catalyst films are similar to and distinct from other film products used in research and improvement projects. It examines a process for equitably engaging a team of many different stakeholders—patients, providers, and researchers—to select video excerpts from existing research-based patient experience interviews to create catalyst films. It describes methods used to ensure robust input from all team members, so that all perspectives influence the catalyst films. The study concluded that patient and public involvement had significant impact on both the research process and the final products created. Our findings can equip those making or selecting films for use in improving health and social care to ensure films are patient informed. The paper concludes by offering limitations and recommendations for future research to advance the fields of patient and public involvement and quality improvement. [ABSTRACT FROM AUTHOR]

Even with the addition of CFTR-modulator therapies in cystic fibrosis (CF) care, engagement in home treatments by persons with CF (PwCF) and their family caregivers remains key to slowing progression of CF-related complications. Best practice guidelines for home care describe an ideal not necessarily attainable for many PwCF in real life. Effective clinical partnerships between PwCF/their families and clinicians are critical to developing feasible home treatments plans. A team of content and methodology experts conducted a grounded dimensional analysis of transcribed interviews from 20 clinicians and 7 parents of 9 children with CF to identify and describe social processes associated with a clinical partnership. The resulting theoretical framework explicates conceptualizations of partnership (i.e. mutuality and reciprocity) and conditions (i.e. quality and duration of relationship, patient's developmental or life stage) that contribute to the enactment of successful partnerships. Parents recognize their own and clinicians' complementary contributions to partnerships. Clinicians focus on strategies to improve outcomes – some consistent, other discrepant with their conceptualizations of partnership. Participants' reflections of lessons learned from successful versus failed partnerships informed their subsequent enactments of partnerships. Trends in health care delivery show a shift from well-intended, yet paternalistic, paradigms to partnership models in which the complementary expertise of patients and caregivers as well as clinicians are mutually recognized and valued. Our findings show that while parents and clinicians endorse similar philosophical principles of partnership, they differ in how they actually enact them. Transition to a partnership paradigm appears to remain a work in progress. [ABSTRACT FROM AUTHOR]

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. We found both variable levels of engagement and broad agreement that shared governance of learning remains a work in progress. We also identified a range of practices that can support or thwart development of an organizational culture conducive to shared governance, including transparency, capacity building, infrastructure investment, leadership, attention to diversity of patient partners, and committee structures. In LHSs with most sophisticated shared governance, both employees and patients contribute to building a democratic learning culture. [ABSTRACT FROM AUTHOR]

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. As a result the collaboration has established a collection of unique, international resources that can be leveraged to promote understanding and learning from people's experiences of illness and care. [ABSTRACT FROM AUTHOR]

Patient narratives have emerged as promising vehicles for making health care more responsive by helping clinicians to better understand their patients' expectations, perceptions, or concerns and encouraging consumers to engage with information about quality. A growing number of websites incorporate patients' comments. But existing comments have fragmentary content, fail to represent less vocal patients, and can be manipulated to "manage" providers' reputations. In this article, we offer the first empirical test of the proposition that patient narratives can be elicited rigorously and reliably using a five-question protocol that can be incorporated into large-scale patient experience surveys. We tested whether elicited narratives about outpatient care are complete (report all facets of patient experience), balanced (convey an accurate mix of positive and negative events), meaningful (have a coherent storyline), and representative (draw fulsome narratives from all relevant subsets of patients). The tested protocol is strong on balance and representativeness, more mixed on completeness and meaningfulness. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

We conducted a simulated clinician-choice experiment, comparing choices and decision-making processes of participants (N = 688) randomized among four experimental arms: a conventional website reporting only quantitative performance information, a website reporting both qualitative (patient comments) and quantitative information, the second website augmented by a decision aid (labeling of patient comments), and the decision-aided website further augmented by the presence of a trained navigator. Introducing patient comments enhanced engagement with the quality information but led to a decline in decision quality, particularly the consistency of choices with consumers' stated preferences. Labeling comments helped erase the decline in decision quality, although the highest percentage of preference-congruent choices was seen in the navigator arm. Engagement with the quality information and satisfaction with choices available were likewise highest in the navigator arm. Findings held for high- and low-skilled decision makers. Thus, navigator assistance may be a promising strategy for equitably promoting higher quality choices in information-rich contexts. [ABSTRACT FROM AUTHOR]

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. An extensive qualitative literature documents all these social phenomena, and more, in connection with the spread of prenatal and newborn screening. So why is it, then, that commentators frequently assert that the predicted psychosocial impact of increased screening and testing associated with "the genomic revolution" has been far less severe and worthy of attention than predicted? How can or should social science "evidence" that sits outside adopted measurement conventions be considered? Why is it that summary statements about the psychosocial impact of genomic information often ignore qualitative evidence, or sideline it as relevant only for improving communication among patients, clinicians, and public health systems? This essay addresses such questions, using qualitative research on prenatal and newborn screening as a case study for illustrating the broad methodological, ideological, and dialogical issues at stake. [ABSTRACT FROM AUTHOR]

Policy PointsNarratives 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. An extensive qualitative literature documents all these social phenomena, and more, in connection with the spread of prenatal and newborn screening. So why is it, then, that commentators frequently assert that the predicted psychosocial impact of increased screening and testing associated with "the genomic revolution" has been far less severe and worthy of attention than predicted? How can or should social science "evidence" that sits outside adopted measurement conventions be considered? Why is it that summary statements about the psychosocial impact of genomic information often ignore qualitative evidence, or sideline it as relevant only for improving communication among patients, clinicians, and public health systems? This essay addresses such questions, using qualitative research on prenatal and newborn screening as a case study for illustrating the broad methodological, ideological, and dialogical issues at stake. [ABSTRACT FROM AUTHOR]

The article focuses on what is emerging for qualitative research in the COVID-19 emergency. Topics discussed include the rest of the world has suddenly been forced to join us, with urgency, in confronting questions; and Qualitative researchers will find both ample data, and ample audience, for studies on a wide range of issues such as what kinds of outer supports and inner resources mitigate suffering.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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Objective: To design a methodology for rigorously eliciting narratives about patients' experiences with clinical care that is potentially useful for public reporting and quality improvement.Data Sources/study Setting: Two rounds of experimental data (N = 48 each) collected in 2013-2014, using a nationally representative Internet panel.Study Design: Our study (1) articulates and operationalizes criteria for assessing narrative elicitation protocols; (2) establishes a "gold standard" for assessment of such protocols; and (3) creates and tests a protocol for narratives about outpatient treatment experiences.Data Collection/extraction Methods: We randomized participants between telephone and web-based modalities and between protocols placed before and after a closed-ended survey.Principal Findings: Elicited narratives can be assessed relative to a gold standard using four criteria: (1) meaningfulness, (2) completeness, (3) whether the narrative accurately reflects the balance of positive and negative events, and (4) representativeness, which reflects the protocol's performance across respondent subgroups. We demonstrate that a five-question protocol that has been tested and refined yields three- to sixfold increases in completeness and four- to tenfold increases in meaningfulness, compared to a single open-ended question. It performs equally well for healthy and sick patients.Conclusions: Narrative elicitation protocols suitable for inclusion in extant patient experience surveys can be designed and tested against objective performance criteria, thus advancing the science of public reporting. [ABSTRACT FROM AUTHOR]

Objective: To assess what is known about the relationship between patient experience measures and incentives designed to improve care, and to identify how public policy and medical practices can promote patient-valued outcomes in health systems with strong financial incentives.Data Sources/study Setting: Existing literature (gray and peer-reviewed) on measuring patient experience and patient-reported outcomes, identified from Medline and Cochrane databases; evaluations of pay-for-performance programs in the United States, Europe, and the Commonwealth countries.Study Design/data Collection: We analyzed (1) studies of pay-for-performance, to identify those including metrics for patient experience, and (2) studies of patient experience and of patient-reported outcomes to identify evidence of influence on clinical practice, whether through public reporting or private reporting to clinicians.Principal Findings: First, we identify four forms of "patient-reported information" (PRI), each with distinctive roles shaping clinical practice: (1) patient-reported outcomes measuring self-assessed physical and mental well-being, (2) surveys of patient experience with clinicians and staff, (3) narrative accounts describing encounters with clinicians in patients' own words, and (4) complaints/grievances signaling patients' distress when treatment or outcomes fall short of expectations. Because these forms vary in crucial ways, each must be distinctively measured, deployed, and linked with financial incentives. Second, although the literature linking incentives to patients experience is limited, implementing pay-for-performance systems appears to threaten certain patient-valued aspects of health care. But incentives can be made compatible with the outcomes patients value if: (a) a sufficient portion of incentives is tied to patient-reported outcomes and experiences, (b) incentivized forms of PRI are complemented by other forms of patient feedback, and (c) health care organizations assist clinicians to interpret and respond to PRI. Finally, we identify roles for the public and private sectors in financing PRI and orchestrating an appropriate balance among its four forms.Conclusions: Unless public policies are attentive to patients' perspectives, stronger financial incentives for clinicians can threaten aspects of care that patients most value. Certain policy parameters are already clear, but additional research is required to clarify how best to collect patient narratives in varied settings, how to report narratives to consumers in conjunction with quantified metrics, and how to promote a "culture of learning" at the practice level that incorporates patient feedback. [ABSTRACT FROM AUTHOR]

Abstract: Debates about expanding newborn screening with whole genome sequencing are fueled by data about public perception, public opinion, and the positions taken by public advocates and advocacy groups. One form of evidence that merits attention as we consider possible uses of whole‐genome sequencing during the newborn period is parents’ (and children's) diverse experiences with existing expanded screening protocols. What do we know about this experience base? And what implications might these data have for decisions about how we use whole genome sequencing and how we assess its impact in the future? Although the broader literature on genetic susceptibility testing suggests that testing usually does not have adverse effects on children's psychosocial well‐being, certain newborn screening results have been demonstrated to cause distress, alter behavior, and even to influence the formation of new parental and family identities. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

As our understanding of genetics has grown, and its importance has increased in clinical care, pregnancy and the fetus are often seen through a genetic lens. Clinicians who care for pregnant women are charged with explaining genetic risk and overseeing prenatal screening. For the clinician, genetics represents clearly defined application of a particular kind of scientific knowledge. Further, heritability in clinical terms is understood as purely genetic. Pregnant women themselves, however, may not give these genetic explanations the same primacy or meaning. In order to better understand the way pregnant women actually understand and explain heritability, we completed in-depth interviews with 26 pregnant women, listening as they gave weight and substance to the various factors they describe as influencing the personhood of their unborn children. Two-thirds of our respondents were Hispanic or African American. Most were recruited through programs that serve low-income women. The interviews were coded and analyzed by using categories that emerged directly from the narratives captured in the interviews and that revealed the broad, cross-cutting, overlapping parameters of women's deeply-held beliefs about heritability. These stories represent narratives of heritability that are profoundly familial and cultural. They incorporate belief in the authoritative knowledge of medicine-including any genetic information-into a complex and usually multicultural context, woven together by ancestry, household, and community. [ABSTRACT FROM AUTHOR]

Newborn screening for genetic disorders is the most widely-used form of genetic testing in the United States, and the number of disorders for which infants are screened is now expanding rapidly. This article explores the dominant narratives structuring public understanding about the need for mandatory screening, and about screening programs' unprecedented practice of testing for non-infectious diseases without parental consent. Using primary data from a qualitative research study, the author also examines the experience of newborn screening from the perspective of mothers, with particular attention to how receipt of a genetic diagnosis at birth affects early parenting, mothers' perceptions of their babies, and the power dynamics between parents and their health care providers. [ABSTRACT FROM AUTHOR]

This Viewpoint discusses the importance of reciprocal trust between patients and physicians, identifies reasons physicians may not trust their patients, and proposes ways physicians can communicate their trust directly to patients. [ABSTRACT FROM AUTHOR]