Patient Experiences

Key Messages:

• The burden of diabetic macular edema is significant, but treatment adherence is poor.

• Low disease education may be a contributing factor, and further research is needed to understand how and when to provide information tailored to specific patients.

Objective: To describe the experiences and perspectives of people with type 2 diabetes mellitus (T2DM) regarding dietetic services and to suggest improvements for their access and delivery.

Design: Semistructured telephone interviews.

Setting: Urban and rural Australia.

Participants: A total of 30 English-speaking adults with T2DM recruited by means of electronic advertisements and posters.

Phenomenon of interest: Engagement with services, adherence to diet, and perspectives regarding dietetic services.

Analysis: Capability, opportunity, and motivation model of behavior and theoretical domains framework informed the analysis.

Results: Participants were predominantly middle-aged, White, university-educated, and full-time professionals. Most had been diagnosed with T2DM for 2 years or more, were overweight or obese, were on glucose-lowering medication, and had visited the dietitian at least once. Two inter-related behaviors were identified: eating a healthy diet for T2DM and participating with dietetic services. Health literacy, as well as support by family, friends, and professionals, were reported as enablers for both these behaviors. Barriers stated included misconceptions about diets and the role of dietitians, unpleasant previous experiences with services, and lack of social support.

Conclusions and implications: These data support that improving health literacy of people with T2DM, in conjunction with social support by family and friends and professional support by dietitians, is likely to facilitate dietary behavior change.

With natural language processing and machine learning, researchers are identifying patient emotional and medical needs that are not being met by clinicians and patient advocacy groups. This study leveraged artificial intelligence and natural language processing to algorithmically analyze over 500,000 public, anonymous patient comments online to understand what needs of chronic patients are unmet. The analysis has utilized the power of the machine to move past  unconscious assumptions on what  patients want and to augment traditional focus groups in which a small group of people often represent the voice of a population. It demonstrates the utility of large scale text mining for delivering real value to chronic patients and ensuring every voice is heard.
The study highlights the collective voices of the online patient communities across 10 different diseases with 6 out of 8 of patients’ top unmet needs to be more emotional than medical.  Patients want to understand how to live with their diseases, adapt daily routines to accommodate side effects, and connect with other patients to share their journeys. Current systems fail in humanizing patients.  Emotional needs are still largely unaddressed while medical needs are the focus of current efforts and innovation.  There remains a large opportunity for health care stakeholders to come together to treat patients as people rather than a set of symptoms and to provide greater support, awareness, and education. By doing so, we can define real patient value through the patient’s lens, addressing both their emotional and medical needs. Only then can we innovate, build and deliver the solutions that will ultimately help patients live the lives that they choose.

Existing sociological studies of critical illness deal mainly with providers and families, but seldom with patients, themselves. Moreover, most of the literature on the patient's experience involves chronic illness. Based on the author's experience as an intensive care unit (ICU) patient, this paper demonstrates that certain concerns of the post-Parsonian literature, such as full disclosure of information to patients and patients' negotiation and collaboration with physicians, are of minimal relevance for critically ill patients. This paper also discusses the notebook the author used in the ICU to communicate while on a respirator, thus unintentionally leaving a concurrent record of his experience, in a form of "inadvertent ethnography.” This allowed him to reconstruct experiences rarely accessible to sociologists. Such notebooks can help us construct accounts of the ICU patient's experience, and move us towards a sociology of the critically ill patient. Potential topics for this new research area are suggested.

KEY WORDS: critical illness; intensive care unit (ICU); Parsons; empowerment; disclosure

This study explored how women made sense of their recovery from Anorexia Nervosa (AN). Semi-structured telephone interviews were carried out with fifteen women who had received a diagnosis of AN and defined themselves as either recovered or in recovery. Data were analysed using interpretative phenomenological analysis (IPA). The women described their experiences in terms of three broad areas; being anorexic; the process of change; and being recovered. Transcending these themes was a series of dichotomies involving splits between their mind and body, AN behaviour and cognitions and their rational and irrational side. Further, they indicated that recovery reflects the time when these many different components of their selves are no longer divided and that this was often facilitated through therapy and close relationships which enabled them to find non bodily means to express their distress. Therapy should therefore aim to facilitate a sense of becoming 'whole' again.

This article presents a new avenue for healthcare risk managers to drive improvement for patients and healthcare organizations alike: Working to reduce avoidable patient suffering. It briefly describes the problem of patient suffering, differentiates between avoidable and unavoidable suffering, and suggests that common risk management tools can be used to tackle the problem. It also highlights a success story from one large health system.

Le patient expert est souvent évoqué pour qualifier les patients atteints de maladies chroniques qui, très souvent, suivent une formation en éducation thérapeutique. Les auteurs souhaitent démontrer que ce concept peut être étendu à tous les patients, pour en faire des patients partenaires de leur guérison, au cœur de leur processus de soin. Expert inné de sa santé, le patient invite autour de son parcours de prise en charge de multiples acteurs, soignants mais également accompagnateurs et aidants. S’appuyant sur une enquête et des situations cliniques variées, les auteurs proposent d’élargir le champ de vision des soignants, mais également des patients et proches aidants, sur les dynamiques fondamentales liant tous ces acteurs des soins pouvant les amener vers l’expertise. Avec un accompagnement bienveillant, compréhensible et cohérent, le patient n’est plus passif. Il acquiert un statut de partenaire de plus en plus actif. Confiant en ce riche réseau de soins autour de lui, il acquiert une densité de savoirs propice à la prise de décision, en pleine autonomie et en toute sécurité. L’intelligence collective autour des parcours de soins, de santé et de vie du patient autorise un raisonnement clinique supérieur, pour des ajustements efficients. Le patient peut être ainsi reconnu expert. Ces enjeux sont majeurs pour nos relations interpersonnelles et nos systèmes de soins. Ils imposent un langage commun et intelligible par tous qui doivent être pris en compte dans les parcours de formation initiaux ou continus des acteurs du soin.

Purpose: The aim of the study was to describe the Jordanian patients' experience during their stay in intensive
care units (ICUs) and to explore factors that contribute to positive and negative experiences.
Materials and methods: A descriptive, exploratory design was used. The study was conducted at 3 hospitals in
Jordan. Patients were selected from surgical and medical ICUs within 72 hours after transfer to the floor. Data
were collected through structured interviews using the Intensive Care Experience Questionnaire with 98 patients.
Results: Data showed high level of awareness among patients to surrounding persons (82.2%) and relatives
(90.3%). Although 58% of patients perceived pain as a problem during their stay, patients' perception of the care
as good as it should be was generally high (82%). Male and female patients differed significantly in their frightening
experiences (t=−2.559, P = .01).
Conclusion: Understanding patients’ experiences in the ICU would increase nurses' awareness to patients’ stressors.
It would help policy makers in designing structural and process-related care activities in a manner that promotes
positive patient experiences, which would improve quality of care in general and specifically ICU patients’
outcome. The ICU environment was found to adversely affect patients in many aspects. In addition,most patients
were able to recall their ICU experience.

The term ''patient experience'' is currently ubiquitous in health care. Many facilities are striving to improve care by examining how patients interact with and view their organization and the health care professionals who work within it. Although there is a great deal of literature on patient centered care, patient engagement and patient experience in health care generally, there is little focused literature on how this is related to patient experience in medical imaging and radiation therapy. This review article examines the underpinning concepts of patient experience and the factors that contribute to a positive patient experience. These include good communication, care for the patient as an individual, and emotional support. Patients experiencing care in medical imaging and radiation therapy departments have broadly similar expectations, although this can be challenging to provide in a technologically focused, time-limited environment. R ESUM E L'expression « exp erience du patient » est actuellement utilis ee partout dans les soins de sant e. Plusieurs etablissements s'efforcent d'am eliorer les soins en examinant comment les patients interagissent avec leur organisation et les professionnels de la sant e qui y travaillent, et comment ils les perçoivent. Bien qu'un grand nombre d'articles aient et e publi es a propos des soins centr es sur le patient, de l'engagement du patient et de l'exp erience du patient, peu de ces articles portent sur l'exp erience du patient en imagerie m edicale ou en radioth erapie. Dans cet article de synth ese, les auteurs se penchent sur les notions sous-jacentes a l'exp erience du patient et les facteurs qui contribuent a une exp erience positive pour le patient. Ces facteurs comprennent la bonne communication, les soins pour le patient en tant que personne et le soutien emotionnel. Les patients qui reçoivent des soins dans les services d'imagerie m edicale et de radioth erapie ont des attentes largement similaires bien que cela soit difficile a assurer dans un environnement o u l'accent est mis sur la technologie et o u le temps est limit e.

The value of the time we live in, the new revolutionary discoveries in the medical field, the economic requirements, and the speed of development of the means of communication determine us to adapt to the new challenges of life. In this paper, we presented some tools for assessing patient fluctuation at the general practitioner (GP). This has a direct impact on doctor-patients relationship management because it provides both an overview and a detailed view of the causes that lead to an increase or decrease in the number of enrolled patients.In view of this, the physician will know more precisely what are the vulnerabilities and the opportunities that he/she has to deal with, in his/her relationship with patients. The brief explanation of the SWOT analysis will help the doctor to manage his company more effectively, being more aware of the causes that determine the patient’s dynamics. Let’s not forget that patients go where they want and stay where they are appreciated!

Keywords: office management, SWOT analysis, patient fluctuation, physician-patient relationship, assessment

Problem: Questions have been raised about whether undergraduate institutions are effectively preparing premedical students in the sociobehavioral and cognitive reasoning content found on the revised Medical College Admission Test, providing opportunities to understand and apply these sociobehavioral and cognitive reasoning concepts in real-world scenarios, and offering career exploration opportunities.

Approach: The Research in Physician-Patient Interactions course is a 15-week course designed for premedical students and taught through the collaboration of an emergency medicine physician and an applied medical anthropologist. As of January 2016, the course is offered each spring at the University of South Florida, Tampa, Florida. The course provides opportunities for patient and physician shadowing within the anthropological methodological framework of participant observation. Other qualitative research methods are also taught, and students complete a group patient experience quality improvement project.

Outcomes: Thematic analysis of students' field notes and reflection essays and follow-up communications with course alumni revealed 3 salient themes regarding the utility of patient shadowing as a research method that provides unique types of qualitative data, as a teaching tool for premedical students to understand the perspectives of patients, and as an approach to developing the professional skills necessary in health care, such as effective communication styles, establishment of rapport, and empathy.

Next steps: Similar courses should be offered at other universities to premedical students. While it appears that patient shadowing experiences have a great impact during premedical education, there may also be value in integrating a similar experience into medical school and residency training.

The excellence of hospital Emergency Department (ED) Service is the one of the most relevant items of health care quality perceived by patients and by their families. Patients experience is considered a way of measuring the quality of services provided. Objectives: To study the impact of National Accreditation Board for Hospitals & Healthcare Providers (NABH) Accreditation, India on the patients experience of Emergency Department services. Methods: It is a quantitative, descriptive and inferential research based case study in which sample of a population was studied by structured patients experience survey questionnaires (before and after the accreditation) in a private tertiary care hospital at Secunderabad, Telangana State, India to determine its characteristics, and it is then inferred that the population has the same or different characteristics. Significance of Research: It was observed initially before the accreditation that there was a lower patient’s experience rate of the hospital Emergency Department Services, which was affecting the study hospitals’ business. Hypothesis: Null Hypothesis (Ho) and Alternative Hypothesis (H1) were used and tested to compare the before and after impact of accreditation by applying to each question in the questionnaire. Study Design: The closed ended questionnaire was developed considering the Emergency Department Services by incorporating the six dimensions of quality Safe, Timely, Effective, Efficient, Equitable, and Patient-centred (STEEP) and tested prior to implementing. Questionnaires were given to the patients' families for completion upon using the Emergency Department Services two months before and two months after the accreditation. The data were collected in order to cover all three shifts of the Emergency Department Services. Study Population: Simple random sampling method was selected; the researcher had involved all conscious patients (clinical conditions) from all age groups. Data Collections: Primary data were collected from the survey questionnaires. Secondary data were collected from relevant published journals, articles, research papers, academic literature and web portals. Conclusion: The pre-accreditation scores (M = 93.86) were improved significantly after the accreditation (M = 118.52) which means patient experience of emergency department services has been improved after the accreditation. This indicates that the accreditation has a positive impact on the Patients Experience of Emergency Department Services in the study hospital.

Background: Specialized hospitals are faced with overcrowding in OPDs, improper behaviour of staff and navigation difficulties. In an apex tertiary care referral public hospital of India, Patient care coordinators (PCCs) were introduced to help patients navigate as a part of an OPD decongestion project. A novel concept involving patient interaction, called for measuring patient experience, to provide a baseline measurement, further improvements needed and benchmarking. For this, the model for decongestion also needed to be studied.

Methods: A descriptive and cross-sectional study was conducted. Direct observations were conducted to study decongestion model and expectations from PCCs. Patient experience was measured from 400 patients using a 27-item questionnaire designed by researcher. A 5-point Likert’s scale was used for their availability, politeness, promptness, guidance, information accuracy, emotional support, etc. Dichotomous scale was also used to measure competence of PCCs.

Results: A patient reception centre with three different zones was created based on status of appointments, unique hospital identification number (UHID) and new or re-visit patients. Waiting areas were created and crowd distributed based on handling capacities of sub-waiting areas dynamically adjusting to service time of doctors. PCCs facilitated navigation to right destinations. Patients had positive experience irrespective of age, gender and educational status. It related positively with a confident next visit.

Conclusions: Introduction of PCCs is an effective way for assisting patient navigation. The study contributes by providing a measure of experience and benchmarking. It succinctly describes a model for decongesting OPD that may be adopted in similar settings.

Keywords: Outpatient department, Overcrowding, Patient experience, Patient care coordinators

The goal of this article is to educate people and other patients about the possibility that they have been victims of medical negligence or misconduct, and to encourage them to examine medical literature and seek justice against some of the corporate doctors.

This research investigates the possibility of communicating human experience from, through and to the body. While investigating the experience of my own genetic disorder I will examine the dominant discourse on the subject and how it might be subverted, shifted or avoided as required in order to grasp this ineffable phenomenon as a patient. Methods of movement observation and embodied filmmaking will be used to explore the clinical environment during the course of my own treatment. If we put aside discussions of probability and risk, cause and effect, how can we characterize genetic disorder? What is the nature of the experience and how does it relate to the body? How can art, and specifically physical practices of film and movement, establish a fruitful interdisciplinary exchange with medicine on the subject of patient experiences?

Aims and Objectives. This article uses the concept of embodiment to demonstrate a conceptual approach to applied phenomenology.

Background. Traditionally, qualitative researchers and healthcare professionals have been taught phenomenological methods, such as the epoché, reduction, or bracketing. These methods are typically construed as a way of avoiding biases so that one may attend to the phenomena in an open and unprejudiced way. However, it has also been argued that qualitative researchers and healthcare professionals can benefit from phenomenology's well-articulated theoretical framework, which consists of core concepts, such as selfhood, empathy, temporality, spatiality, affectivity, and embodiment.

Design. This is a discursive article that demonstrates a conceptual approach to applied phenomenology.

Method. To outline and explain this approach to applied phenomenology, the Discussion section walks the reader through four stages of phenomenology, which progress incrementally from the most theoretical to the most practical.

Discussion. Part one introduces the philosophical concept of embodiment, which can be applied broadly to any human subject. Part two shows how philosophically trained phenomenologists use the concept of embodiment to describe general features of illness and disability. Part three illustrates how the phenomenological concept of embodiment can inform empirical qualitative studies and reflects on the challenges of integrating philosophy and qualitative research. Part four turns to phenomenology’s application in clinical practice and outlines a workshop model that guides clinicians through the process of using phenomenological concepts to better understand patient experience.

Conclusion and Relevance to Clinical Practice. A conceptual approach to applied phenomenology provides a valuable alternative to traditional methodological approaches. Phenomenological concepts provide a foundation for better understanding patient experience in both qualitative health research and clinical practice, and therefore provide resources for enhancing patient care.

Internationally, person-centred care has become a central tenet of many health and social care related policies and strategies. However, few studies exist that explicitly examine the linkage between patients’ perceptions of a person-centred care climate and patients’ experiences of care. This has been hampered by a dearth of instruments with acceptable psychometric properties. The aim of this study is to examine the relationship between patients’ perceptions of person-centredness and their experiences of care. A cross sectional survey design was used to purposively sample (n = 345, 57.5%) patients from across 10 acute hospitals settings in Ireland. The data was collected Feb 2013-May 2013. Standardised instruments were used to measure patients’ perceptions of person-centredness and their experiences of care. Questionnaire packs were distributed to a sample of patients based on predetermined inclusion criteria. Completed questionnaires were returned in a sealed envelope. The instruments were psychometrically tested prior to full analysis of the results. Ethical approval was granted by Research Ethics Committees in all participating hospitals. The psychometric properties of both instruments were determined as satisfactory. There was a moderate positive and significant relationship between patients’ perceptions of a person-centred climate and patient experiences. Patients who perceived care as being more person-centred also reported a more positive patient experience. The emergence of new instruments designed to measure patients’ perceptions of person-centredness and patient experiences have been shown to have acceptable psychometric properties. This study demonstrates clear linkage between patients’ experiences of care and the key indicators of person-centred care.

The material environment impacts on patients’ wellbeing and healing process. In complex and hard-to-enter healthcare settings, architects and other designers have difficulty to collect information about patients' experience; hospital boards and facility managers experience difficulties to approach their familiar environment from a patient perspective. This paper explores how information on patient experience resulting from research in care contexts can be usefully and conveniently translated to designers and healthcare professionals. This should support the development of spaces, products and/or services that seek to improve patient experience. Case studies explore what different stakeholders expect to gain from information on patient experience and how it can be provided in the most valuable way. How the information is presented turns out to be key in how it is used. So far the format was custom-made for each specific case. Further research should investigate how the available ...

For patients a hospital visit is a profound experience influenced by their mental and physical state in that moment. Various aspects of the hospital environment play a role in their experience. For most patients communicating about this expe-rience in all its complexity is a difficult task. This difficulty impedes designers’ and hospital professionals’ insight into patients’ perspective on the hospital environ-ment. For this reason we are investigating how research on patient experience can in-form hospital design. In this paper, we explore more specifically (1) how insight in-to patient experience can create an empathic and motivated understanding amongst healthcare professionals and designers, (2) what kind of information is needed to achieve this, and (3) how their improved understanding impacts on their problem solving ability. To this end, we report on a case study in collabora-tion with a general hospital, with which we organised a series of workshops about improving wayfindin...

Peripheral intravascular cannula/catheter (PIVC) insertion is a common invasive procedure, but PIVC failure before the end of therapy is unacceptably high. As PIVC failure disrupts treatment and reinsertion can be distressing for the patient, prevention of PIVC failure is an important patient outcome. Consumer participation in PIVC care to prevent failure is an untapped resource. This study aimed to understand consumers' PIVC experience; establish aspects of PIVC insertion and care relevant to them; and to compare experiences of adult consumers to adult carers of a child. An international, web-based, cross-sectional survey was distributed via social media inviting adult consumers and adult carers of a child under 18 years who had experienced having a PIVC in the last five years (one survey each for adults and adult carers) to complete a 10-item survey. As such, sampling bias is a limitation and results should be carefully considered in light of this. There were 712 respondents from 25 countries, mainly female (87.1%) and adults (80%). A little over 50% of adults described insertion as moderately painful or worse, with level of insertion difficulty (0–10 scale) identified as moderate (median 4, IQR 1, 7). Adult carers reported significantly more pain during insertion and insertion difficulty (both p < 0.001). Rates of first insertion attempt failure were higher in children compared with adults (89/139 [64%] vs 221/554 [40%]; p < 0.001), and 23% of children required ! 4 attempts, compared with 9% of adults (p < 0.0001). Three themes from open-ended question emerged: Significance of safe and consistent PIVC care; Importance of staff training and competence; and Value of communication. The PIVC experience can be painful, stressful and frustrating for consumers. Priorities for clinicians and policy makers should include use of pain relief as standard practice to reduce the pain associated with PIVC insertion and developing strategies to increase first PIVC insertion attempt success particularly for children and older consumers.

Professional identity formation is acknowledged as one of the fundamental tasks of contemporary medical education. Identity is a social phenomenon, constructed through participation in everyday activities and an integral part of every learning interaction. In this paper we report from an Australian ethnographic study into how medical students and patients use narrative to construct their identities. The dialogic narrative analysis employed focused on the production of meaning through the use of language devices in a given context, and the juxtaposition of multiple perspectives. Two stories told by students about their participation in patient care-related activities reveal how identities are constructed in this context through depictions of the relationships between medical students, patients and clinical teachers. These students use the rhetorical functions ofstories to characterise doctors and patients in certain ways, and position themselves in relation to them. They defend common practices that circumvent valid consent processes, justified by the imperative to maximise students' participation in patient care-related activities. In doing so, they identify patients as their adversaries, and doctors as allies. Both students are influenced by others' expectations but one reveals the active nature of identity work, describing subtle acts of resistance. These stories illustrate how practices for securing students' access to patients can influence students' emerging identities, with implications for their future disclosure and consent practices. We argue that more collaborative ways of involving medical students in patient care-related activities will be facilitated if students and clinical teachers develop insight into the relational nature of identity work.

Objectives:  To assess whether variation in the provision of cancer specialist nurses in England is associated with variation in positive experiences of care by patients undergoing treatment for cancer.
Design: Cross sectional study using routinely collected national survey data.
Setting: English acute hospital NHS trusts
Participants: Patients with a primary diagnosis of cancer who attended hospital as an inpatient or outpatient day case in the first three months of 2010  in 158 NHS trusts who responded to a national survey (n=67,713, response rate 67%)
Main Outcome Measures:  Patient perceptions of coordination of care, quality of information provision, emotional support and support for symptom management.
Results: Patients of trusts that had the fewest patients per specialist nurse were more likely to report that people treating and caring for them worked well together (adjusted odds ratio 1.08, 95% Confidence Interval 1.01 - 1.15  p=0.02), and enough emotional support during ambulatory treatment (1.15, 1.01 - 1.32  p=0.04) but were no more likely to report being given the right amount of information (0.96, 0.88 –to 1.05  p=0.38) when compared to patients in trusts with the most patients per specialist nurse. Breast cancer patients undergoing chemotherapy in the trusts with fewer patients per specialist nurse were more likely to report good support for control of side effects from chemotherapy (1.34, 1.02 to1.75, p=0.03).
Conclusions: Cancer patients’ experiences of care coordination and emotional support are better in trusts with more specialist nurses. The absolute differences are small and further research must investigate whether particular roles or service configurations are associated with better experience.

I this presentation held at an internal training event of the Janssen Academy in Budapest, I outline some key aspects of patient advocacy, give an overview of the affective model of patient advocacy that is currently my central topic of research, and also present some examples for organised patient advocacy and education work done in Europe.

Background: There is long standing interest in identifying patient outcomes that are sensitive to nursing care and an increasing number of systems that include outcomes in order to demonstrate or monitor the quality of nursing care. Objective: We undertook scoping reviews of the literature in order to identify patient outcomes sensitive to the quality of nursing services in ambulatory cancer chemotherapy settings to guide the development of an outcomes based quality measurement system. Methods: A 2 stage scoping review to identify potential outcome areas which were subsequently assessed for their sensitivity to nursing. Data sources included the Cochrane Library, Medline, Embase, the British Nursing Index, Google and Google scholar Results: We identified a broad range of outcomes potentially sensitive to nursing. Individual trials support many nursing interventions but we found relatively little clear evidence of effect on outcomes derived from a systematic reviews and no evidence associating characteristics of nursing services with outcomes. Conclusion: The purpose of identifying a set of outcomes as specifically nurse-sensitive for quality measurement is to give clear responsibility and create an expectation of strong clinical leadership by nurses in terms of monitoring and acting on results. It is important to select those outcomes that nurses have most impact upon. .Patient experience, nausea and vomiting, mucositis and safe medication administration were outcome areas most likely to yield sensitive measures of nursing service quality in ambulatory cancer chemotherapy.

Collecting NHS patient experience data is critical to ensure the delivery of high-quality services. Data are obtained from multiple sources, including service-specific surveys and widely used generic surveys. There are concerns about the timeliness of feedback, that some groups of patients and carers do not give feedback and that free-text feedback may be useful but is difficult to analyse. Objective: To understand how to improve the collection and usefulness of patient experience data in services for people with long-term conditions using digital data capture and improved analysis of comments.

Background: Recent evidence shows that patient engagement is an important strategy in achieving a high performing healthcare system. While there is considerable evidence of implementation initiatives in direct care context, there is limited investigation of implementation initiatives in decision-making context as it relates to program planning, service delivery and developing policies. Research has also shown a gap in consistent application of system-level strategies that can effectively translate organizational policies around patient and family engagement into practice. Methods: The broad objective of this initiative was to develop a system-level implementation strategy to include patient and family advisors (PFAs) at decision-making points in primary healthcare (PHC) based on wellestablished evidence and literature. In this opportunity sponsored by the Canadian Foundation for Healthcare Improvement (CFHI) a co-design methodology, also well-established was applied in identifying and developing a suitable implementation strategy to engage PFAs as members of quality teams in PHC. Diabetes management centres (DMCs) was selected as the pilot site to develop the strategy. Key steps in the process included review of evidence, review of the current state in PHC through engagement of key stakeholders and a co-design approach. Results: The project team included a diverse representation of members from the PHC system including patient advisors, DMC team members, system leads, providers, Public Engagement team members and CFHI improvement coaches. Key outcomes of this 18-month long initiative included development of a working definition of patient and family engagement, development of a Patient and Family Engagement Resource Guide and evaluation of the resource guide. Conclusion: This novel initiative provided us an opportunity to develop a supportive system-wide implementation plan and a strategy to include PFAs in decision-making processes in PHC. The well-established co-design methodology further allowed us to include value-based (customer driven quality and experience of care) perspectives of several important stakeholders including patient advisors. The next step will be to implement the strategy within DMCs, spread the strategy PHC, both locally and provincially with a focus on sustainability.

“Hysteria” and “hystero-epilepsy” were common medical diagnoses among physicians during the nineteenth century. In Paris, L’Hôpital de la Salpêtrière—originally a hospice for the poor and a prison for prostitutes and other female inmates—became a center of great interest for the possible role of neurological diseases in these conditions. At the same time in the Americas and Europe, gynecologists were removing women’s ovaries in cases with the same clinical con- ditions, which emphasized the role of the ovaries in contemporary hysteria studies in France, Great Britain, and the United States. The objective of this article is to explore nineteenth-century conceptuali- zations of ovarian pain as an organ-pathological substrate for a portion of these diagnoses. The theoretical role of the pelvic organs in these diagnoses has waxed and waned over the centuries, but there have not been many detailed explorations of the associated clinical phe- nomena. Suggesting an organic basis (le substratum organique) for the diagnoses remains a precarious notion, given the universally repu- diated role of the uterus and decreasing interest in the ovary. In contemporary literature, the potential role of the ovary has not been addressed from a detailed medical perspective, however.

Content-Based Image Retrieval (CBIR) locates, retrieves and displays images alike to one given as a query, using a set of features. It demands accessible data in medical archives and from medical equipment, to infer meaning after some processing. A problem similar in some sense to the target image can aid clinicians. CBIR complements text-based retrieval and improves evidence-based diagnosis, administration, teaching, and research in healthcare. It facilitates visual/automatic diagnosis and decision-making in real-time remote consultation/screening, store-and-forward tests, home care assistance and overall patient surveillance. Metrics help comparing visual data and improve diagnostic. Specially designed architectures can benefit from the application scenario. CBIR use calls for file storage standardization, querying procedures, efficient image transmission, realistic databases, global availability, access simplicity, and Internet-based structures. This chapter recommends important and complex aspects required to handle visual content in healthcare.

Objective: To explore people's experiences of starting antidepressant treatment.

Design: Qualitative interpretive approach combining thematic analysis with constant comparison. Relevant coding reports from the original studies (generated using NVivo) relating to initial experiences of antidepressants were explored in further detail, focusing on the ways in which participants discussed their experiences of taking or being prescribed an antidepressant for the first time.

Participants: 108 men and women aged 22-84 who had taken antidepressants for depression.

Setting: Respondents recruited throughout the UK during 2003-2004 and 2008 and 2012-2013 and in Australia during 2010-2011.

Results: People expressed a wide range of feelings about initiating antidepressant use. People's attitudes towards starting antidepressant use were shaped by stereotypes and stigmas related to perceived drug dependency and potentially extreme side effects. Anxieties were expressed about starting use, and about how long the antidepressant might begin t...

Experience Co-design is the involvement of experts from diversified fields for designing the optimal experience. While experience designing concepts have been the center stage in design of Information Technology applications and mobile devices, it has not been of much interest in healthcare. But with advent of consumerism catching up and the importance of patient satisfaction and patient experience gaining momentum in healthcare, experience co-design is again an idea that requires adaptation and adoption into mainstream healthcare delivery system with participation of the patients, family, physician, nurses and all stakeholders involved in the healthcare. Experience design is not just related to patient, but also should be adopted for enhancing employee engagement and experience. Employee satisfaction and positive experience of the employee will help in better productivity and efficiency of the employee and the employee being able to deliver better care for the patient as well. This paper introduces the importance of experience co-design in healthcare delivery system.

Patients evaluate the quality of home health agencies (HHAs) using the Health Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey. This paper describes a prototype community health information system to help patients select appropriate and quality HHAs, according to the location, proprietary status, type of service, and year of HHA establishment. Five HCAHPS indicators were selected: "summary rating", "quality of care", "professional care", "communication", and "recommend agency". Independent t-test analysis showed that agencies offering Speech Pathology, Medical-Social, or Home Health Aide services, receive significantly worse HCAHPS ratings, while mean ratings vary significantly across different US states. Multiple comparisons with post hoc ANOVA revealed differences between and within HHAs of different proprietary status (p < 0.001): governmental HHAs receiving higher ratings than private HHAs. Finally, there was observed a relationship between all five quality rating variables and the HHA year of establishment (Pearson, p < 0.001). The older the agency is, the better the HCAPS summary ratings. Findings provided the knowledge to design of a consumer health information system, to provide rankings filtered according to user criteria, comparing the quality rankings of eligible HHAs. Users can also see how a specific agency is ranked against eligible HHAs. Ultimately, the system aims to support the patient community with contextually realistic comparisons in an effort to choose optimal HH service.

Objective. The objective of this study was to explore the experience of patients who had stoma surgery to treat cancer in order to explicate why problems associated with stoma surgery are not decreasing despite technical improvements in stoma care.


Design. A longitudinal design was used in order to capture the process of preparing for surgery and dealing with its aftermath. Participants were interviewed using a semi-structured protocol on three occasions; 1-2 weeks before surgery (eight participants), 1-2 weeks after surgery (seven participants), and 3 months after surgery (four participants).


Method. Transcripts were analysed guided by the procedures of grounded theory. This involved developing categories from the data and linking them together to form a conceptual understanding of our participants' experience.


Results. Lowered personal control was the most important concept to emerge from the analysis. We identified perceived causes of lowered control, its mitigating factors, the strategies used to manage this experience and the consequences of these processes.


Conclusions. We make three recommendations based on the conclusion that improvements could be implemented in the psychological aspects of stoma care and, in particular, the enabling of patient perceived self-efficacy. First, improvements could be made in doctor-patient communication with doctors becoming more aware of their psychological impact on patients. Second, specialist stoma care nurses could be trained to recognize patients with dysfunctional self-efficacy beliefs and/or delayed adaptation. Finally, we identify a need for more prolonged practical emotional support for at least some stoma out-patients.

The excellence of hospital Hemodialysis Department (HD) Service is the one of the most relevant items of health care quality perceived by patients and by their families. Patients experience is considered a way of measuring the quality of services provided. Objectives: To study the impact of National Accreditation Board for Hospitals & Healthcare Providers (NABH) Accreditation, India on the patients experience of Hemodialysis Department services. Methods: It is a quantitative, descriptive and inferential research based case study in which sample of a population was studied by structured patients experience survey questionnaires (before and after the accreditation) in a private tertiary care hospital at Secunderabad, Telangana State, India to determine its characteristics, and it is then inferred that the population has the same or different characteristics. Significance of Research: It was observed initially before the accreditation that there was a lower patient&#39;s experience rat...

Patients evaluate the quality of home health agencies (HHAs) using the Health Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey. This paper describes a prototype community health information system to help patients select appropriate and quality HHAs, according to the location, proprietary status, type of service, and year of HHA establishment. Five HCAHPS indicators were selected: "summary rating", "quality of care", "professional care", "communication", and "recommend agency". Independent t-test analysis showed that agencies offering Speech Pathology, Medical-Social, or Home Health Aide services, receive significantly worse HCAHPS ratings, while mean ratings vary significantly across different US states. Multiple comparisons with post hoc ANOVA revealed differences between and within HHAs of different proprietary status (p < 0.001): governmental HHAs receiving higher ratings than private HHAs. Finally, there was observed a relationship between all five quality rating variables and the HHA year of establishment (Pearson, p < 0.001). The older the agency is, the better the HCAPS summary ratings. Findings provided the knowledge to design of a consumer health information system, to provide rankings filtered according to user criteria, comparing the quality rankings of eligible HHAs. Users can also see how a specific agency is ranked against eligible HHAs. Ultimately, the system aims to support the patient community with contextually realistic comparisons in an effort to choose optimal HH service.

De rangorde lijsten op internet spelen nauwelijks een rol bij de keuze van een ziekenhuis.
(AD en Consumentenbond zijn relatief het bekendst en worden relatief het meest ingezien)
Daarentegen is er nog een grote behoefte bij zorgconsumenten aan specifieke en transparantie informatie over de te verlenen zorg.
Wil de keuze van de zorgconsument meer invloed hebben op het stimuleren van verdergaande kwaliteitsontwikkeling in de zorg, dan zal de zorgconsument meer in staat moeten worden gesteld zijn/ haar keuze eenvoudiger te maken. De behoefte is er.

Aims: This article describes the development of a questionnaire designed for comparisons of patient experiences of hospital care within the Nordic countries. The results of testing for data quality, reliability, and validity are presented following a Norwegian survey. Methods: Following a literature review and consultation within an expert group six items were developed measuring patient experiences together with two items assessing global satisfaction and perception of incorrect treatment. The questions were included in a questionnaire that was mailed to 500 patients randomly selected from patients receiving inpatient treatment at a large university hospital in Norway. Principal component analysis was used to assess dimensionality. Reliability was assessed by the internal consistency and test–retest methods. Construct validity was assessed by the scale’s correlation with variables known to be related to patient experiences. Results: A total of 244 (48.8%) patients responded. Levels...

Purpose-The purpose of this paper is to understand how patients on a low security personality disorder ward experienced multidisciplinary team (MDT) meetings, in order to suggest improvements that would benefit the patients and clinical teams. Design/methodology/approach-The design was a case study where all patients on a low secure ward that specialised in personality disorders were approached to take part in the research. The study utilised non-participant observations of the MDT meeting (n ¼ 11), followed by individual interviews with the patients (n ¼ 10). Findings-The data were subjected to a thematic analysis and this illuminated five themes relating to the patients' experience of the MDT meetings namely, the importance of leave applications, the formality of the meetings, the opportunity to check on progress, decision-making and the importance of communication. Practical implications-The findings suggest that small changes could be made to improve the patients' experience of the MDT meeting. These included the provision of a less formal setting, ensuring a system where leave can be requested confidentially, greater transparency about the content of progress reports, and clearer communication between the MDT and the patient after the meeting. Originality/value-There is limited research that has explored patients' experiences of MDT meetings within secure forensic settings, and the use of non-participant observations of the MDT meeting followed by semi-structured interviews meant that the researcher and the patient had a shared experience that formed the basis of the later discussion.

How did I learn to understand that there can never ever be any acceptable alternative to immortality and living indefinitely forever young?

Is there any better way to learn and permanently remember the understanding that any possibly imaginable alternative to reverse all adverse effects of aging and happily live indefinitely forever young, healthy and energetic would have the same long-term negative consequences as intentionally committing suicide than I have described in this authentic experience report?

When I was only 6 years old, I went through an emotional trauma, from which I am still suffering today and that has led me to come here and be the only one working in the EIT building during Christmas break. On October 2nd, 1980, only one day before my daddy’s birthday, my aunt Frieda, who I liked a lot because she paid lots of attention to my long stories and actually took them serious, suffered from a sudden heart attack. My daddy succeeded to bring her back to life with CPR and my mom called the emergency doctor in the mean time. The doctor was a quiet man from Romania. He had short back hear and looked like being around 30 years old. His voice was very quiet and emotionally detached when he asked my grandma about the age of my aunt. My grandma replied: "She is 83 years old." And then something happened, which I never expected, i.e. the doctor went on in his empathy-lacking quiet voice to say the few German words, which I still remember as if my aunt had died yesterday. He said “Ich denke, wir hoeren auf.” In English this means, “I think, we are going to quit.” He meant going to quit any efforts and even medical interventions at our disposal to bring my aunt Frieda back to live and to make sure she’ll stay alive. When the doctor said this, it was spooky quiet, as if a ghost would kill my aunt. I felt like screaming into the face of the doctor, YOU MUST DO YOUR JOB AS EMERGENCY DOCTOR, TO DO EVERYTHING IN YOUR POWER TO MINIMIZE MY AUNT’S RISK TO DIE FROM THIS PARTIAL HEART ATTACK REGARDLESS OF HER AGE!!!! But I was only six. I was scared and confused. It was my first real encounter with death. I helplessly looked at my parents and looked at my grandma. I wanted them to demand from the doctor not to use my aunt Frieda’s advanced age against her. Although I was only six years old I strongly felt that no medical provider has the moral right and should be punished harshly when using his patient’s age as a shallow absolutely unjustified excuse for refusing to save their lives. But it was so quiet this time, which I recall must have been around 7.30 p.m. on October the 2nd, 1980, when my aunt laid diagonally across the carpet on the floor of the children’s room. Neither my mom nor my daddy nor my grandma nor my 2 younger siblings opened their mouth.

Although I was furious beyond anyone’s imagination, the fact that my otherwise very confident parents and even my grandma, who was best friends with my dying aunt, i.e. all three adults in the room, who’d I expect to fight for my life if I ever needed urgent medical care, and who’d otherwise readily expressed their opposition to anything they did not agree with or considered unfair, did not even attempt to pressure the doctor on a mental, emotional emphatic, moral, medical or legal level, to take his job seriously regardless how he personally felt about my aunt’s advanced age. When something totally unexpected like this happens, i.e. in case of such kind of second degree murder due to medical neglect and intentionally withholding readily available medical interventions without any apparent rational reason for not even trying to save my aunts life, when we still had a chance, I became speechless. I felt like screaming to my parents to not allow the doctor to let my aunt die, after my daddy had brought her back to life already. My daddy is very good in CPR. He’ll fight for everyone’s life as if it was his own. My daddy waited for the doctor’s instructions on how to proceed after restoring my aunts consciousness to the point where she had her eyes opened and could hear every single word, which was spoken by anyone in the children’s room. When all this happened I stood about 4 feet away from my aunt. I was afraid to move any closer because I was worried of accidentally bump into something I could not see but which would kill here. Now something happened that I can never forget. My daddy got up from the carpet and stopped CPR! I felt like screaming “NOOOOOOOOOOOOO!!!!!!!!!” “WHYYYYYYYYYY???” “DON’T!!!!!!” “KEEP BREATHING MORE AIR IN HER MOUTH!!!!! Don’t listen to this evil doctor. He has no respect for life! He does not deserve to be an emergency doctor!!! What if she were his aunt???? She is conscious and will most likely fully come back to life if you’ll just give her enough time to get over this medical crisis!!!! Actually, she was already over the hump because apparently her heart was beeping already independently and all my daddy was still doing, was breathing air in my aunt’s mouth. I wanted my mom to call another doctor. I wanted him to be a German doctor, who treats our aunt as if she was his aunt. I felt that this Rumanian doctor had no empathy for Germans because when my entire family looked up to him for help, he indirectly killed by neglect.

Even if is negative medical intuition should turn out to be true and all of our medical interventions were doomed to fail this evening, I felt he should at least try anyways or else there would have been no point in the doctor making the trip to our home. Then he could have stayed in his killer-hospital. At least that way he would not have had the opportunity to encourage my daddy from reviving my aunt with CPR. When I was six, my daddy was still very powerful. He would have kept performing CPR for hours to save my aunt’s life, if this disguised killer-doctor, would not have instructed him to stop and let her die, just because he felt no old people deserve resources intensive medical care, unless they are his own relatives. Would he let his aunt or grandmother dies like that if he had good chances to prevent or at least postpone death? This I felt would have certainly give my aunt enough time to get over the fear, which is an inherent feature of anyone surviving a heart attack, especially when the doctor is instructing my daddy to stop keeping her alive. I felt like being in a madhouse. I could not speak. My otherwise very attentive parents and grandmother did not seem to be aware that I felt so much emotional pain with such a mental intensity that I almost felt as if I was the one dying instead of my aunt. This god dam Rumanian doctor! Why did he have to be on duty when my aunt needed dedicated professional medical help to get over her heart attack? Why did the hospital not send a German doctor with a strong voice, who’d be much more assertive in his speech and actions to instruct my parents to do everything in their power to save my aunt’s life? Why did my aunt deserve such an indecisive foreign doctor, who lacks the kind of strong loud confidence inducing voice, patients and their relatives need in their struggle of succeeding in overcoming any medical crisis? Why did this stupid hospital send us this absolutely useless and even counterproductive foreign physician, who refused to even say a single word when my parents and grandma looked up to him and expected rational life-saving medical advice? What was he thinking when he condemned my aunt with the only very ambiguous sentence, I still remember verbatim from this cursed Rumanian doctor, “I think we are going to quit.”? Was he asking my parents, whether they’d approve his proposal to quit saving my aunt’s life? Did he order my daddy to quit CPR and let my aunt die? This doctor showed lack of leadership when everyone is expecting him to take charge of the medical crisis at hand and to maximize the odds for the best possible medical outcome.

I remember not being able to feel anything that evening. My aunt laid dead diagonally across the carpet in the children’s room when I started to understand that everyone expects me to go to sleep as usual. I hid under my blanket and wanted to die. I cried so hard. What if I had a heart attack? Would my parents and grandma follow the medical advice of the doctor, if he told them that he thinks, we should quit saving my life? Luckily, I only was 6 and no doctor would even dream about using my age as an excuse for letting me die. But, what about 80 years from now? From then onward, I wanted to become strong, innovative, energetic and knowledge to defeat death before it would inevitably kill me only about 80 years later. That is why I came to America.

Background: There is long standing interest in identifying patient outcomes that are sensitive to nursing care and an increasing number of systems that include outcomes in order to demonstrate or monitor the quality of nursing care. Objective: We undertook scoping reviews of the literature in order to identify patient outcomes sensitive to the quality of nursing services in ambulatory cancer chemotherapy settings to guide the development of an outcomes based quality measurement system. Methods: A 2 stage scoping review to identify potential outcome areas which were subsequently assessed for their sensitivity to nursing. Data sources included the Cochrane Library, Medline, Embase, the British Nursing Index, Google and Google scholar Results: We identified a broad range of outcomes potentially sensitive to nursing. Individual trials support many nursing interventions but we found relatively little clear evidence of effect on outcomes derived from a systematic reviews and no evidence associating characteristics of nursing services with outcomes. Conclusion: The purpose of identifying a set of outcomes as specifically nurse-sensitive for quality measurement is to give clear responsibility and create an expectation of strong clinical leadership by nurses in terms of monitoring and acting on results. It is important to select those outcomes that nurses have most impact upon. .Patient experience, nausea and vomiting, mucositis and safe medication administration were outcome areas most likely to yield sensitive measures of nursing service quality in ambulatory cancer chemotherapy.

Background: Open-ended questions eliciting free-text comments have been widely adopted in surveys of patient experience. Analysis of free text comments can provide deeper or new insight, identify areas for action, and initiate further investigation. Also, they may be a promising way to progress from documentation of patient experience to achieving quality improvement. The usual methods of analyzing free-text comments are known to be time and resource intensive. To efficiently deal with a large amount of free-text, new methods of rapidly summarizing and characterizing the text are being explored.