BACKGROUND: Clinical outcomes in gestational trophoblastic disease (GTD) are generally excellent, but GTD is a rare and complex condition that requires specialist information and support to offer a gold standard of care. Across Europe, specialist nurses and/or midwives are increasingly common in the GTD multidisciplinary team to work alongside medical professionals in a holistic model of care; however, the role is sometimes non-existent or can vary significantly between GTD centres.
OBJECTIVE: The aim of the European Organisation for Treatment of Trophoblastic Diseases\' (EOTTD) is to harmonise best practice in Europe. To provide a basis for the European standardisation of best practice nursing care in GTD, a group of European GTD nurses/midwives composed guidelines for minimal requirements and optimal nursing care of GTD patients.
METHODS: Members of the EOTTD member countries with nursing representation attended multiple workshops, both virtual and in person, and guidelines were created by consensus and evidence where available.
RESULTS: 16 nurses and 1 midwife from 4 countries (England, Ireland, Sweden, and the Netherlands) contributed. The group created flow diagrams for treatment and screening patients, showing minimum and best practice nursing care for patients with GTD.
CONCLUSIONS: Despite the many different models of care and resources available to GTD services, this consensus working group has provided a set of guidelines to drive forward a patient focused holistic model of care for GTD patients. This is an original paper, whereby no such guidelines in GTD nursing have been developed before. The implementation of guidelines will encourage other health care professionals to improve the provision of patient care.

A paradigm shift is underway in the patient-clinician relationship, driven by irreversible changes in information access, yet the model under which clinicians are trained, care is conducted, and care delivery is designed has not changed significantly even though we call it \"patient centered.\" Humanity endured centuries in which even doctors had little idea what the patient\'s problem really was. Science slowly solved that, and for a century, only doctors could know what was worth knowing. Today, the rise of the internet and digital health has led to the end of that era. We are already witnessing early signs of the era of participatory health: genuinely empowered people living their lives and managing their health according to their own priorities, in partnership and consultation with physicians as needed. This may feel like a threat to the physician\'s sacred role, but it is no more so than when physicians adopted informed consent and then shared decision-making. In the 2010s, many pharmaceutical, medical, and health care companies started to use patient centricity as a mantra. We argue that to drive this paradigm change fully into existence, we need to shift \"patient centricity\" from a relatively passive process, driven by industry needs, into a far more active, collaborative process driven by both parties\' needs and preferences. To build this new world of practice and workflow, we simply must engage with patients as true partners. To achieve medicine\'s new potential, it must be optimized around the wants and priorities of the ultimate stakeholder-the party that has the most at stake in how it all plays out: the patient. Patient design is the approach that can make it happen.

Despite spending more on health care than any other country, the United States has the worst maternal mortality rate among all developed nations. African American and American Indian/Alaskan Native women have the worst outcomes by race, representing a stark health disparity within the country. Contributing factors disproportionately experienced by these minority populations include challenges of access to consistent and high-quality prenatal care, prevalence of underlying conditions, toxic stress due to systemic racism, and unconscious bias in health care. While many of these factors lie upstream in the lives of women, and seemingly beyond the scope of the clinical walls, the downstream health care delivery system can serve as a vital part of the solution via innovative practices, community-based collaborations, and by serving as advocates for the communities served. Such alignments between clinicians, community leaders, policymakers, and patients that extend beyond the health system can serve as the missing piece needed within the clinic to reverse the trajectory of maternal mortality for American women, especially those from traditionally underserved populations.

Despite comparable screening and incidence rates that are 26% below that of non-Hispanic Whites, Hispanic women present with breast cancer at more advanced stages of disease, representing a continuing and troubling health disparity for this population. Reducing these disparities warrant more innovative research approaches to better understand perspectives of Hispanic patients regarding barriers to treatment and how these perspectives compare to those of their providers. A pilot qualitative study was conducted at a major urban cancer center in Arizona that measured both patient and provider perspectives regarding barriers to treatment. Through a multimethod qualitative analysis, researchers surveyed patients and providers to identify perceived barriers and discordance in shared understanding. Data collection and analysis consisted of surveying patients and providers, then performing inductive qualitative analysis. Results indicated the highest concordance, or shared understanding, between patients and providers was in recognizing barriers within delivery of care, such as cost of care and insurance coverage. The greatest discordance, or gaps in shared understanding, existed in upstream barriers of the health care system, such as emotional support and trust in systems. These results underscore the gap in shared understanding between patients and providers regarding upstream barriers to care as well as the nonclinical social determinants of health Hispanic patients face in accessing breast cancer treatment. More research is warranted using this approach as a tool to reduce health disparities.

Introduction The consenting process has been surgeon-focussed traditionally, but there is a recent trend towards making the process more patient and procedure-focussed. The primary aims were to identify the risks considered most important and requiring further discussion by the patients undergoing primary total hip arthroplasty (THA) and primary total knee arthroplasty (TKA), as well as to identify the sporting and recreational activities these patients would like to pursue after surgery according to the age group, taking into consideration their values and expectations. The secondary aim is to assess the compliance of the current consenting process with guidelines set out by a governing body in a tertiary referral arthroplasty unit. Material and method A prospective study reviewing the consenting process was carried out on 137 patients undergoing THA or TKA over a 12-month period in a tertiary teaching hospital. Patients unable to complete a questionnaire and undergoing revision or uni-compartment arthroplasty were excluded. A standardized anonymous questionnaire was administered. Patients were asked to fill in the specific activities they considered important to be discussed. The data were tabulated in Microsoft Excel (Microsoft Corporation, Redmond, Washington) and subgroup analysis was performed using the student\'s t-test. The level of statistical significance was p=0.05. Two-hundred consent forms were reviewed to assess whether the information entered correlated to the guidelines presented in Ortho-Consent. Results One-hundred thirty-seven questionnaires were reviewed. The mean age was 66 (range 45-91), with the majority of patients undergoing TKA (114) versus THA (23). The patients in active employment were more concerned about blood clots, pain, joint failure, limb length discrepancy, and infection. Patients undergoing TKA wanted more information on pain management and joint longevity, which achieved statistical significance. There was a significant difference in the activities patients would like to pursue as well as in expectations amongst different age groups. The quality of documentation in the consent form was quite variable in discussing complications, surgery benefits, and alternative treatments. Conclusion Obtaining consent is a patient-specific process. Patient perception of important points that merit discussion can vary with age and employment status. Return to driving is important for all ages, however, as the population ages, the ability to return to activities of daily living becomes an increasingly important discussion point during the consent process.

Purpose The purpose of this paper is to discuss the results of an effort to use social media generated data for measuring patient satisfaction with medical care services. Traditionally, scientifically designed patient satisfaction surveys are used to provide such measurements. The goal here is to evaluate the possibility of supplementing patient satisfaction surveys with social media generated patient satisfaction measurements such that the later can be used either as validation or replacement for the former. Although surveys are scientifically designed to yield dependable results, recent studies have revealed multiple factors relating to the methods currently used for survey data collection, that may be contributing to the limitations of many survey results. In light of such criticisms, this study explored the possibility of using the increasing popular and proactively generated consumer ratings through the pervasive social media as data source for satisfaction measurement. The average satisfaction scores created from such data are then used to compare levels of satisfaction among five types of health service businesses. Design/methodology/approach The data used in this research are garnered from the consumer review social media site called \"Yelp!\". Ratings and reviews that are related to health and medical services were extracted from the \"Yelp!\"
METHODS: The types of services that are identified by consumers are standardized to typologies that are traditionally used in health service research. Five types of services were targeted - general practice physician offices, physician specialty services, dentists, hospitals and physical therapy services. The \"five-star\" rating systems were re-coded to form a five-point ordinal scale variable to represent \"satisfaction score\". Findings The Yelp! data-based measurement of patient satisfaction produced an overall satisfaction score of 3.8 (SD=1.7) for the sampled services. The average satisfaction score per type of service ranged from 3.16 (SD=1.83) for specialty physicians to 4.52 (SD=1.57) for physical therapists. In general, dentists and physical therapists received higher average satisfaction scores as compared to the other medical services. Research limitations/implications Because this study was meant to evaluate the utility of social media generated data to measure satisfaction, in general, the estimates cannot be construed as representative of any underlying geographically defined population. They, however, do have a \"cohort\" interpretability. This limitation is not inherent to the use of the data source. If some geographically identifiable representation of the measurement data is desired, identifiable business data can be generated from the Yelp! system to specifically target relevant populations following the method that are tested in this study. Practical implications Under certain circumstances, such as the size and maturity of the gathered data, social media generated data can be a useful as a \"fortuitous\" alternative to satisfaction surveys for evaluating patient satisfaction with medical care. This is propitious as there have been some indication by studies that the advent of communication media in the twenty-first century may be undermining the reliability of scientifically designed surveys. Originality/value The use of social media generated data as \"alternative\" or \"secondary\" data source for research use is currently being widely investigated. To the author\'s knowledge, this is the only paper that evaluated the use of \"Yelp!\" data as a possible source for population-based formal satisfaction measurement for healthcare services.

Involving patients in the development of medicines and vaccines should result in benefits to patients. The vaccine recipient is usually a healthy person. We describe the rationale and implementation of a vaccine company\'s initiative to encourage employees to identify with patients of the conditions prevented by the vaccines they help to produce. The Voice of the Patient (\"VoP\"), begun in 2014, is an educational programme directed at the 16,000 employees of a global vaccine company. It engages employees through an understanding that they are all \"vaccine patients\", and that they can make a difference by considering the impact of decisions made in their day to day work. The initiative includes presentations about vaccine-preventable diseases, global live webcasts with experts and patients, employee visits to healthcare facilities in developing countries, and the production of patient-focused sections in research publications. In a 2017 employee survey, 90% of respondents said they know how their daily work impacts patients and they demonstrate focus on patients. We believe this is preliminary evidence that, by supporting employee awareness of the impact of their individual roles, VoP could be a model for a type of initiative that will contribute to industry\'s continuing evolution towards more patient-centred healthcare.

Multiple sclerosis is the most common cause of non-traumatic disability in young adults, with most diagnoses occurring between the ages of 25-49 years. Nutrition must be managed effectively and holistically to improve health and quality of life. Dysphagia management is collaborative and can enhance nutrition and hydration goals as well as reduce the risk of aspiration pneumonia. A case study demonstrates the specialist clinical skills and frameworks used to achieve nutrition, hydration, safety and patient focused outcomes.