The Office of Human Research Protections was not justified in issuing findings against the SUPPORT Institutions. Our community can learn from the evolving healthcare transformation into learning health systems by thinking about the novel ethical issues about standard of care research raised by the SUPPORT with the same spirit of quality improvement. The current regulatory framework and the concept of foreseeable research risks is insufficient to advance the debate about the ethics of randomization of standard clinical interventions. This (...) article uses the example of the Wisconsin cystic fibrosis randomized clinical trial for newborn screening trial to explore the distinctions between risks of research and clinical care and waivers of informed consent for randomization. Collaborative exploration of these complex policy issues is needed and further deliberation, community engagement, and social science research will be critical to advance novel approaches for informed consent. (shrink)

Quality improvement (QI) is fundamental to maintaining high standards of health care. Significant debate exists concerning the necessity for an ethical approval system for those QI projects that push the boundaries, appearing more similar to research than QI. The authors discuss this issue identifying the core ethical issues in family medicine (FM), drawing upon the fundamental principles of medical ethics, including principles of autonomy, utility, justice and non-maleficence. Recent debate concerning the application of QI ethics boards is discussed (...) with relevance to primary care and issues such as general practitioner (GP) intentions, the impact of QI on patients and the use of confidential patient data and the impact of dissemination. The authors conclude that a system of QI ethical approval leaves many issues unresolved and potentially creates several barriers to implementing QI. To ensure ethical QI work is generated within FM it is essential for GPs to learn about and engage in more ethical reflection so that they can better judge and resolve these issues. (shrink)

Since the curriculum is the core carrier to improve the level of talent cultivation in colleges and universities, strengthening the reform of course teaching and improving the quality of course teaching are fundamental to the survival and development of colleges and universities, and also an important part of higher education reform. In this study, a fuzzy analytic hierarchy process and an entropy method were used to determine the weight of the core evaluation indicators of undergraduate course quality (...) class='Hi'>improvement, including four first-level indicators of the curriculum concept, curriculum resources, curriculum organization, and curriculum effectiveness, and 12 s-level evaluation indicators and weights. Then, based on a case study of the first-class undergraduate course “Management” of Anyang Normal University, the way to evaluate the course by the AHP and entropy method was explained. Finally, according to the evaluation results, the ideas of course construction were put forward, such as changing the course concept, enriching the course resources, paying attention to the course organization, and ensuring the course effectiveness, so as to improve the quality of undergraduate courses and also to improve the quality of undergraduate talent training with the improvement of course quality as the starting point. (shrink)

Institutional review boards distinguish health care quality improvement and health care quality improvement research based primarily on the rigor of the methods used and the purported generalizability of the knowledge gained. Neither of these criteria holds up upon scrutiny. Rather, this apparently false dichotomy may foster under-protection of participants in QI projects and over-protection of participants within QIR.

Background Adherence to ethical guidelines and regulations and protecting and respecting the dignity and autonomy of participants by obtaining a valid informed consent form (ICF) prior to participation in research are crucial; The subjects did not add signatures next to the corrections made to signatures or dates on the ICF, Multiple signatures in other fields, ICF missing/missing signature, Incorrect ICF version Signed after modification, Correction tape used to correct signature, Impersonated signature, Non-research-member signature, however, ICFs are often not properly completed, (...) which must be addressed. This study analyzed ICF signing errors and implemented measures to reduce or prevent these errors. Methods We used the plan–do–check–act (PDCA) cycle to help improve the correctness and validity of ICF signing. Results Interim and final reports from January 2016 to February 2020 including 363 ICFs were studied. The total proportion of correct ICF signatures (200, 83.3%) following the PDCA intervention was significantly higher than that before the intervention (P < 0.05). Analysis of the types of signing error demonstrated that signature errors were significantly reduced after the intervention, particularly for subjects did not add signatures next to the corrections made to signatures or dates on the ICF (16, 6.7%) and impersonated signature (0; P < 0.05). Conclusions The proportions of other error types—multiple signatures in other fields, missing or unsigned ICF, incorrect signature order, incorrect ICF version, use of correction tape to correct signature, and non-medical profession members signing the ICF—did not differ significantly. (shrink)

Health care organizations are constantly seeking ways to improve quality of care and one of the often-posed solutions to deliver ‘good care’ is reflexivity. Several authors stress that enhancing the organizations’ and caregivers’ reflexivity allows for more situated, and therefore better care. Within quality improvement initiatives, devices that guarantee quality are also seen as key to the delivery of good care. These devices do not solely aim at standardizing work practices, but are also of importance in (...) facilitating reflexivity. In this article, we study how quality improvement devices position the relationship between situated reflection and standardization of work processes. By exploring the work of Michel Callon, Michael Lynch, and Lucy Suchman on reflexivity in work practices, we study the development and introduction of the Care Living Plan. This device aimed to transform care organizations of older people from their orientation towards the system of care into organizations that take a client-centred approach. Our analysis of the construction of specific forms of reflexivity in quality devices indicates that the question of reflexivity does not need to be opposed to standardization and needs to be addressed not only at the level of where reflexivity is organizationally situated and who gets to do the reflecting, but also on the content of reflexivity, such as what are the issues that care workers can and cannot reflect upon. In this paper we point out the theoretical importance of a more detailed empirical study of the framing of reflexivity in care practices. (shrink)

Health care organizations are constantly seeking ways to improve quality of care and one of the often-posed solutions to deliver ‘good care’ is reflexivity. Several authors stress that enhancing the organizations’ and caregivers’ reflexivity allows for more situated, and therefore better care. Within quality improvement initiatives, devices that guarantee quality are also seen as key to the delivery of good care. These devices do not solely aim at standardizing work practices, but are also of importance in (...) facilitating reflexivity. In this article, we study how quality improvement devices position the relationship between situated reflection and standardization of work processes. By exploring the work of Michel Callon, Michael Lynch, and Lucy Suchman on reflexivity in work practices, we study the development and introduction of the Care Living Plan. This device aimed to transform care organizations of older people from their orientation towards the system of care into organizations that take a client-centred approach. Our analysis of the construction of specific forms of reflexivity in quality devices indicates that the question of reflexivity does not need to be opposed to standardization and needs to be addressed not only at the level of where reflexivity is organizationally situated and who gets to do the reflecting, but also on the content of reflexivity, such as what are the issues that care workers can and cannot reflect upon. In this paper we point out the theoretical importance of a more detailed empirical study of the framing of reflexivity in care practices. (shrink)

Background: Poverty and social deprivation have adverse effects on health outcomes and place a significant burden on healthcare systems. There are some actions that can be taken to tackle them from within healthcare institutions, but clinicians who seek to make frontline services more responsive to the social determinants of health and the social context of people’s lives can face a range of ethical challenges. We summarise and consider a case in which clinicians introduced a poverty screening initiative into paediatric practice (...) using the discourse and methodology of healthcare quality improvement. -/- Discussion: Whilst suggesting that interventions like the PSI are a potentially valuable extension of clinical roles, which take advantage of the unique affordances of clinical settings, we argue that there is a tendency for such settings to continuously reproduce a narrower set of norms. We illustrate how the framing of an initiative as QI can help legitimate and secure funding for practical efforts to help address social ends from within clinical service, but also how it can constrain and disguise the value of this work. A combination of methodological emphases within QI and managerialism within healthcare institutions leads to the prioritisation, often implicitly, of a limited set of aims and governing values for healthcare. This can act as an obstacle to a genuine broadening of the clinical agenda, reinforcing norms of clinical practice that effectively push poverty ‘off limits.’ We set out the ethical dilemmas facing clinicians who seek to navigate this landscape in order to address poverty and the social determinants of health. -/- Conclusions: We suggest that reclaiming QI as a more deliberative tool that is sensitive to these ethical dilemmas can enable managers, clinicians and patients to pursue health-related values and ends, broadly conceived, as part of an expansive range of social and personal goods. (shrink)

BackgroundHigh levels of moral distress in nursing professionals, of which oncology nurses are particularly prone, can negatively impact patient care, job satisfaction, and retention.Aim“Positive Attitudes Striving to Rejuvenate You: PASTRY” was developed at a tertiary cancer center to reduce the burden of moral distress among oncology nurses.Research DesignA Quality Improvement (QI) initiative was conducted using a pre- and post-intervention design, to launch PASTRY and measure its impact on moral distress of the nursing unit, using Hamric’s Moral Distress Scale–Revised (...) (MDS-R.) This program consisted of monthly 60-minute sessions allowing nurses to address morally distressing events and themes, such as clinicians giving “false hope” to patients or families. The PASTRY program sessions were led by certified clinicians utilizing strategies of discussion and mind-body practices.ParticipantsClinical nurses working on an adult leukemia/lymphoma unit.Ethical considerationsThis was a QI initiative, participation was voluntary, MDS-R responses were collected anonymously, and the institution’s Ethics Committee oversaw PASTRY’s implementation.FindingsWhile improvement in moral distress findings were not statistically significant, the qualitative and quantitative findings demonstrated consistent themes. The PASTRY program received strong support from nurses and institutional leaders, lowered the nursing unit’s moral distress, led to enhanced camaraderie, and improved nurses’ coping skills.DiscussionMeasurement of moral distress is innately challenging due to its complexity. This study reinforces oncology nurses have measurable moral distress. Interventions should be implemented for a safe and healing environment to explore morally distressing clinical experiences. Poor communication among multidisciplinary team members is associated with moral distress among nurses. Programs like PASTRY may empower nurses to build support networks for change within themselves and institutions.ConclusionThis QI initiative shows further research on moral distress reduction should be conducted to verify findings for statistical significance and so that institutional programs, like PASTRY, can be created. (shrink)

The overall policy and strategies of an organization i.e. employeepolicy or employee development strategies, resource management as well asmonitoring and control strategies characteristically have an effect on the qualitymanagement of the organization. These policies usually also have impact onthe stakeholders i.e. satisfaction of the wider community and employees ofthe particular organization. The aim of this paper is to examine the policyand strategies of the Chittagong City Corporation for quality improvementand how these policy and strategies impact on the needs of (...) its stakeholders.This paper is guided by the EFQM model as the theoretical underpinning thatprovides specific enabler criteria of quality management of organizations suchas employee policy, development of partnerships and resource management,and the monitoring of strategies. These enabler criteria help to explain the waysin which total quality management is implemented in any organization.Data for this study was collected from a total of 142 participants, includingselective officials of the Chittagong City Corporation, city dwellers,government officials and civil society representatives by using a structuredquestionnaire. The findings of this study reveal that the CCC has failed toconvey clearly its quality mission and objectives to its employees at all levels. (shrink)

Patients and physicians often perceive the current health care system to be unfair, in part because of the ways in which coverage decisions appear to be made. To address this problem the Ethical Force Program, a collaborative effort to create quality improvement tools for ethics in health care, has developed five content areas specifying ethical criteria for fair health care benefits design and administration. Each content area includes concrete recommendations and measurable expectations for performance improvement, which can (...) be used by those organizations involved in the design and administration of health benefits packages, such as purchasers, health plans, benefits consultants, and practitioner groups. (shrink)

There is a claim that clinical ethics support services (CESS) improve healthcare quality within healthcare organisations. However, there is lack of strong evidence supporting this claim. Rather, the current focus is on the quality of CESS themselves or on individual learning outcomes. In response, this article proposes a theoretical framework leading to empirical hypotheses that describe the relationship between a specific type of CESS, moral case deliberation and the quality of care at the organisational level. We combine (...) insights from the literature on CESS, organisational learning and quality improvement and argue that moral case deliberation causes healthcare professionals to acquire practical wisdom. At the organisational level, where improving quality is a continuous and collective endeavour, this practical wisdom can be aggregated into morisprudence, which is an ongoing formulation of moral judgements across cases encountered within the organisation. Focusing on the development of morisprudence enables refined scrutinisation of CESS-related quality claims. (shrink)

Individuals with chronic pain often experience co-existing sleep problems and depression-related states. Chronic pain, sleep problems, and depression interrelate, and have been shown to exacerbate one another, which negatively impacts quality of life. This study explored the relationships between pain severity, pain interference, sleep quality, and depression among individuals with chronic pain. Secondly, we tested whether sleep quality may moderate the relationship between pain and depression. A cross-sectional survey was completed by 1,059 adults with non-malignant chronic pain (...) conditions and collected measures related to pain severity, pain interference, sleep quality, and depression. Multiple regression analyses found that pain severity, pain interference, and sleep quality are all significantly associated with depression. Secondly, moderated regression analyses revealed that sleep quality moderates the relationship between pain interference and depression among individuals with chronic pain such that good sleep quality attenuates the effect of pain interference on depression, and poor sleep quality amplifies the effect of pain interference on depression. These findings suggest that sleep quality may be a relevant therapeutic target for individuals with chronic pain and co-existing depression. (shrink)

Mounting evidence suggests that participation in clinical trials confers neither advantage nor disadvantage on those enrolled. Narrow focus on the question of a “trial effect,” however, distracts from a broader mechanism by which patients may benefit from ongoing clinical research. We hypothesize that the existence of clinical trials infrastructure—the organizational culture, systems, and expertise that develop as a product of sustained participation in cooperative clinical trials research—may function as a quality improvement lever, improving the quality of care (...) and outcomes of all patients within an institution or region independent of their individual participation in trials. We further contend that this “infrastructure effect” can yield particular benefits for patients in low- and middle-income countries. The hypothesis of an infrastructure effect as a quality improvement intervention, if correct, justifies enhanced research capacity in LMIC as a pillar of health system development. (shrink)

Urban and agricultural communities are interdependent but often differ on approaches for improving water quality impaired by nutrient runoff waterbodies worldwide. Current water quality governance involves an overlapping array of policy tools implemented by governments, civil society organizations, and corporate supply chains. The choice of regulatory and voluntary tools is likely to influence many dimensions of the relationship between urban and agricultural actors. These relationships then influence future conditions for collective decision-making since many actors participate for multiple years (...) in water quality improvement. In this policy analysis, we draw on our professional experiences and research, as well as academic and practitioner literatures, to investigate how different types of water quality interventions influence urban-agricultural relationships, specifically examining policy tools on a regulatory to voluntary spectrum. Interactions between farmers and other rural agricultural interests on one hand, and urban residents and their stormwater managers and wastewater treatment plants on the other, influence dynamics relevant for water quality improvement. We suggest that the selection of policy tools within complex governance contexts influence urban–agricultural relationships through financial exchange, political coalitions, knowledge exchange, interpersonal relationships, and shared sense of place. Policy tools that provide a means to build relationships and engage with people’s emotions and identities have potential to influence personal and community change and adaptive capacity, while processes such as lawsuits can catalyze structural change. Engaging these relationships is particularly critical given the need to move out of polarized positions to solve collective problems. (shrink)

Policy work is often cited as one of the primary functions of Hospital Ethics Committees (HECs), along with consultation and education. Hospital policies can have far reaching effects on a wide array of stakeholders including, care providers, patients, families, the culture of the organisation and the community at large. In comparison with the wealth of information available about the emerging practice of ethics consultation, relatively little attention has been paid to the policy work of HECs. In this paper, we hope (...) to advance the development of best practices in HEC policy work by describing the quality improvement process that we undertook at Hamilton Health Sciences, Hamilton, Ontario, Canada. In the first section of the paper we describe the context of our HEC policy work, and the shortcomings of our historical review process. In subsequent sections, we detail the quality improvement project we undertook in 2010, the results of the project and the specific tools we developed to enhance the quality of HEC policy work. Our goal in sharing this organisational case study is to prompt other HECs to publish qualitative descriptions of their policy work, in order to generate a body of knowledge that can inform the development of best practices for ethics policy review. (shrink)

Patients and physicians often perceive the current health care system to be unfair, in part because of the ways in which coverage decisions appear to be made. To address this problem the Ethical Force Program, a collaborative effort to create quality improvement tools for ethics in health care, has developed five content areas specifying ethical criteria for fair health care benefits design and administration. Each content area includes concrete recommendations and measurable expectations for performance improvement, which can (...) be used by those organizations involved in the design and administration of health benefits packages, such as purchasers, health plans, benefits consultants, and practitioner groups. (shrink)

Ongoing evaluation of a clinical ethics consultation service (ECS) allows for continuous quality improvement, a process-based, data-driven approach for improving the quality of a service. Evaluations by stakeholders involved in a consultation can provide realtime feedback about what is working well and what might need to be improved. Although numerous authors have previously presented data from research studies on the effectiveness of clinical ethics consultation, few ECSs routinely send evaluations as an ongoing component of their everyday clinical (...) activities. The primary purpose of this article is to equip and encourage others to engage in ongoing evaluation of their own ECS. Toward that end, the following resources are shared: (1) the survey tool used to gather the evaluation data, (2) the procedure used to elicit and collate responses, and (3) how the resulting data are used to support continuous quality improvement and justify the continued financial support of the ECS to hospital administration. (shrink)

Background The twenty-first century has witnessed an exponential increase in healthcare quality research. As such activities become more prevalent, physicians are increasingly needed to participate as subjects in research and quality improvement (QI) projects. This raises an important ethical question: how should physicians be remunerated for participating as research and/or QI subjects? Financial versus non-monetary incentives for participation Research suggests participation in research and QI is often driven by conditional altruism, the idea that although initial interest in (...) enrolling in research is altruistic or prosocial, decisions to actually perform study tasks are cost–benefit driven. Thus, the three models commonly employed to appropriately compensate participants (in-kind compensation such as travel reimbursement, paying market rates for the subject’s time, and paying market rates for the activity asked of the participant) are a poor fit when the participant is a clinician, largely due to the asymmetry between cost and benefit or value to the participant. Non-monetary alternatives such as protected time for participation, continuing education or maintenance of certification credit, or professional development materials, can provide viable avenues for reducing this asymmetry. Conclusion Research and QI are integral to the betterment of medicine and healthcare. To increase physician participation in these activities as the subject of study, new models are needed that clarify the physician’s role in research and QI as a subject. Non-monetary approaches are recommended to successfully and ethically encourage research and QI participation, and thus incorporate these activities as a normal part of the ethical clinician’s and successful learning healthcare system’s world view. (shrink)

In recent years, to protect the rights and welfare of human subjects, institutions in the USA have begun to set up programmes to monitor ongoing medical research. These programmes provide routine, onsite oversight, and thus go beyond existing oversight such as investigating suspected misconduct or reviewing paperwork provided by investigators. However, because of a lack of guidelines and evidence, institutions have had little guidance in setting up their programmes. To help institutions make the right choices, we used interviews and document (...) analysis to study how and why 11 US institutions have set up their monitoring programmes. Although these programmes varied considerably, we were able to distinguish two general types. ‘Compliance’ programmes on the one hand were part of the institutional review board office and set up to ensure compliance with regulations. Investigators’ participation was mandatory. Monitors focused on documentation. Investigators could be disciplined, and could be obliged to take corrective actions. ‘Quality-improvement’ programmes on the other hand were part of a separate office. Investigators requested to be monitored. Monitors focused more on actual research conduct. Investigators and other parties received feedback on how to improve the research process. Although both types of programmes have their drawbacks and advantages, we argue that if institutions want to set up monitoring programmes, quality improvement is the better choice: it can help foster an atmosphere of trust between investigators and the institutional review board, and can help raise the standards for the protection of human subjects. (shrink)

BackgroundEthics consult services are well established, but often remain underutilized. Our aim was to identify the barriers and perceptions of the Ethics consult service for physicians, advance practice providers (APPs), and nurses at our urban academic medical center which might contribute to underutilization.MethodsThis was a cross-sectional single-health system, anonymous written online survey, which was developed by the UCSD Health Clinical Ethics Committee and distributed by Survey Monkey. We compare responses between physicians, APPs, and nurses using standard parametric and non-parametric statistical (...) methods. Satisfaction with ethics consult and likelihood of calling Ethics service again were assessed using a 0–100 scale using a 5-likert response structured (0 being “not helpful at all” to 100 being “extremely helpful”) and results presented using box plots and interquartile ranges (IQR).ResultsFrom January to July 2019, approximately 3800 surveys were sent to all physicians, APPs and nurses with a return rate of 5.5—10%. Although the majority of respondents had encountered an ethical dilemma (85–92.1%) only approximately half had ever requested an Ethics consult. The primary reason for physicians never having requested a consult was that they never felt the need for help (41%). For APPs the primary reasons were not knowing an Ethics consult service was available (33.3%) or not knowing how to contact Ethics (27.8%). For nurses, it was not knowing how to contact the Ethics consult service (30.8%) or not feeling the need for help (26.2%). The median satisfaction score (IQR) for Ethics consult services rated on a 0–100 scale, from physicians was 76 (29), for AAPs 89 (49), and nurses 70 (40) (p = 0.62). The median (IQR) of likelihood of consulting Ethics in the future also on a 0–100 scale was 71 (47) for physicians, 69 (45) for APPs, and 61 (45) for nurses (p = 0.79). APP’s and nurses were significantly more likely than physicians to believe that the team did not act on the Ethics consult’s recommendations.ConclusionsBased on the results presented, we were able to identify actionable steps to better engage healthcare providers—and in particular APPs and nurses—and scale up institutional educational efforts to increase awareness of the role of the Ethics consult service at our institution. Actionable steps included implementing a system of ongoing feedback that is critical for the sustainability of the Ethics service role. We hope this project can serve as a blueprint for other hospital-based Ethics consult services to improve the quality of their programs. (shrink)

IntroductionPalliative care is an emotionally and spiritually high-demanding setting of care. The literature reports on the main issues in order to implement self-care, but there are no models for the organization of the training course. We described the structure of training on self-care and its effects for a Hospital Palliative Care Unit.MethodWe used action-research training experience based mostly on qualitative data. Thematic analysis of data on open-ended questions, researcher’s field notes, oral and written feedback from the trainer and the participants (...) on training outcomes and satisfaction questionnaires were used.ResultsFour major themes emerged: “Professional role and personal feelings”; “Inside and outside the team”; “Do I listen to my emotions in the care relationship?”; “Death: theirs vs. mine.” According to participants’ point of view and researchers’ observations, the training course resulted in ameliorative adjustments of the program; improved skills in self-awareness of own’s emotions and sharing of perceived emotional burden; practicing “compassionate presence” with patients; shared language to address previously uncharted aspects of coping; allowing for continuity of the skills learned; translation of the language learned into daily clinical practices through specific facilitation; a structured staff’s support system for emotional experiences.DiscussionSelf-care is an important enabler for the care of others. The core of our intervention was to encourage a meta-perspective in which the trainees developed greater perspicacity pertaining to their professional role in the working alliance and also recognizing the contribution of their personal emotions to impasse experienced with patients. (shrink)

When clinical services aspire to quality improvement, creative and innovative approaches to old problems are needed to drive such change. Whilst new ef orts should be applauded, information on this topic can be somewhat grey from an ethical and research point of view. Within the mental health profession there is currently an expectation to routinely evaluate care and disseminate i ndings. The notion of service enhancements under the guise of routine practice is an interesting and untested ethical issue. (...) Should clinical innovation continue to enjoy such impunity as patient autonomy is often compromised as they are often compelled to accept treatment under the coercion of mental health legislation? We believe that it should not. All involvement in any form of research is voluntary, thus patients should also have the right to decline participation in quality projects if they wish to do so. (shrink)

Tort claims have been studied for various reasons. Several studies have found that most tort claims are not related to negligent adverse events and most negligent adverse events do not result in tort claims. Several studies have examined the disposition of tort claims to understand the likelihood of payment once a claim has been made. Still others have proposed that tort-claims trend analysis may help administrators target their quality-improvement efforts and identify problems with quality that would not (...) otherwise be captured.In this article, we conduct a tort-claims analysis to explore areas for quality improvement, specifically for patient safety, in the Veterans Health Administration. Patient safety is an increasingly highlighted aspect of health-care delivery. Failure to assure patient safety can result in bad clinical outcomes, additional costs of care, and a negative organizational image. Filing a tort claim is one way for an individual to express concern about an organization. For our analysis, we draw from resolved tort claims in the Veterans Health Administration from fiscal years 1989 to 2000. (shrink)

Tort claims have been studied for various reasons. Several studies have found that most tort claims are not related to negligent adverse events and most negligent adverse events do not result in tort claims. Several studies have examined the disposition of tort claims to understand the likelihood of payment once a claim has been made. Still others have proposed that tort-claims trend analysis may help administrators target their quality-improvement efforts and identify problems with quality that would not (...) otherwise be captured.In this article, we conduct a tort-claims analysis to explore areas for quality improvement, specifically for patient safety, in the Veterans Health Administration. Patient safety is an increasingly highlighted aspect of health-care delivery. Failure to assure patient safety can result in bad clinical outcomes, additional costs of care, and a negative organizational image. Filing a tort claim is one way for an individual to express concern about an organization. For our analysis, we draw from resolved tort claims in the Veterans Health Administration from fiscal years 1989 to 2000. (shrink)

This article considers the strengths and potential contributions of participatory visual methods for healthcare quality improvement research. It argues that such approaches may enable us to expand our understanding of ‘patient experience’ and of its potential for generating new knowledge for health systems. In particular, they may open up dimensions of people’s engagement with services and treatments which exceed both the declarative nature of responses to questionnaires and the narrative sequencing of self reports gathered through qualitative interviewing. I (...) will suggest that working with such methods may necessitate a more reflexive approach to the constitution of evidence in quality improvement work. To this end, the article will first consider the emerging rationale for the use of visual participatory methods in improvement before outlining the implications of two related approaches—photo-elicitation and PhotoVoice—for the constitution of ‘experience’. It will then move to a participatory model for healthcare improvement work, Experience Based Co-Design. It will argue that EBCD exemplifies both the strengths and the limitations of adequating visual participatory approaches to quality improvement ends. The article will conclude with a critical reflection on a small photographic study, in which the author participated, and which sought to harness service user perspectives for the design of psychiatric facilities, as a way of considering the potential contribution of visual participatory methods for quality improvement. (shrink)