Establishing a core outcome set for peritoneal dialysis : report of the SONG-PD (standardized outcomes in nephrology-peritoneal dialysis) consensus workshop

Outcomes reported in randomized controlled trials in peritoneal dialysis (PD) are diverse, are measured inconsistently, and may not be important to patients, families, and clinicians. The Standardized Outcomes in Nephrology-Peritoneal Dialysis (SONG-PD) initiative aims to establish a core outcome set for trials in PD based on the shared priorities of all stakeholders. We convened an international SONG-PD stakeholder consensus workshop in May 2018 in Vancouver, Canada. Nineteen patients/caregivers and 51 health professionals attended. Participants discussed core outcome domains and implementation in trials in PD. Four themes relating to the formation of core outcome domains were identified: life participation as a main goal of PD, impact of fatigue, empowerment for preparation and planning, and separation of contributing factors from core factors. Considerations for implementation were identified: standardizing patient-reported outcomes, requiring a validated and feasible measure, simplicity of binary outcomes, responsiveness to interventions, and using positive terminology. All stakeholders supported inclusion of PD-related infection, cardiovascular disease, mortality, technique survival, and life participation as the core outcome domains for PD

The Vasco da Gama Movement : reflections and experiences of an exchange programme

The Vasco da Gama Movement (VdGM) defines itself as the Network for Young and Future Family Doctors of the European Regional Branch of the World Organisation of Family Doctors (WONCA Europe). The early beginnings of this movement date back to 2002 during preparations for the Junior Doctor Programme initiated by Dr Alphonse Sips, a dedicated Dutch family doctor, as part of the 2003 WONCA Europe Amsterdam Conference. Together with a group of enthusiastic trainees from the Netherlands and support from the European Academy of Teachers in General Practice/Family Medicine (EURACT), Dr Sips went on to develop the first pre-conference meeting for six international groups, each involving trainees and EURACT teachers to serve as guides. This laid the foundations for the development of the VdGM (Vasco Da Gama Movement, 2012; Sloane, 2016)). The ideals of the movement were set out in 2005 during a meeting that took place in Lisbon, the home of Vasco da Gama, from where he set out on a similar voyage of discovery and thus the name was born. Successful pre-conferences preceding the WONCA Europe Conference have been held annually since. Furthermore, VdGM has continued to grow and expand from then on to include a vast range of other events and activities, all with the aim of improving general practitioner (GP) empowerment, connection and support.peer-reviewe

'Experts', 'partners' and 'fools': exploring agency in HIV treatment seeking among African migrants in London

In an attempt to promote patient agency and foster more egalitarian relationships between patients and doctors, discourse concerning health and wellbeing in the UK has increasingly centred around the notion of informed and 'expert' patients who are able to effectively input into the direction and management of their own health care and treatment. While the relationship between a patient and their doctor can play a vital role in influencing the treatment decisions and health-related outcomes of people living with long term illness, little is known about the ways in which people living with HIV actually perceive their relationship with their doctors, nor the implications this may have for the types of treatment they may seek to use and the related information that they share. Drawing on 11 focus group discussions and 20 repeat interviews undertaken in 2008-2009 with HIV-positive adult migrants from Zambia, Zimbabwe and South Africa living in the UK, this paper argues that patient-doctor relationships can be heavily influenced by the perceived legitimacy of different forms of medical knowledge and treatments and by culturally influenced ideas regarding health, wellbeing and agency. Despite a desire amongst some migrants to use 'traditional' medicines from southern Africa as well as other non-biomedical treatments and therapies, the research found that the perceived lack of legitimacy associated with these treatments in the UK rendered their use a largely clandestine activity. At the same time, many patients made clear distinctions concerning issues affecting their immediate health and factors influencing their more general wellbeing, which in turn, impacted upon the information that they chose to share with, or conceal from, their doctors. Such findings challenge assumptions underpinning policy promoting patient agency and have significant and, in cases, potentially adverse implications for the safety and effective administration and management of HIV treatments in African migrant populations and possibly more generally. (C) 2009 Elsevier Ltd. All rights reserved

International and industry partnerships: Building nursing capacity in Thailand

A newly formed partnership between Edith Cowan University, the Ministry of Public Health in Thailand, a College of Nursing and two major hospitals in Bangkok is building capacity within Thai Nurses to manage mental health problems and HIV/AIDS. The partnership, funded through the AusAID Public Sector Linkages Program is developing and delivering these training programs in three phases. The first two phases support the development of the curriculum and planning for the course delivery, with Phase 3 being the delivery of a four month certificate course in each of the specialist areas, mental health and HIV/AIDS, to local Thai Nurses. The program provides the opportunity for senior Thai Nurse Educators to gain insight into the Australian perspective of the relevant specialist areas as well as the broader Australian health system. Participants have then been able to review the course curricula and teaching methodologies, including additional and revised information and strategies as is relevant to the Thai health environment. An integral component of the program is evaluation. Following completion of the courses, nurses will be followed up on return to their workplace, to assess the impact of the course on the work practices of nurses. The program evaluation will support better understanding of emerging issues for all program partners and provide a strong basis for refinement of the program for future delivery. At the time of the ECU-COM 2006 conference, the program will be at the stage where the Thai nurses are completing the four month course. This paper will discuss the progress of the program to date, from the perspective of the Australian program partner

Barriers, control and identity in health information seeking among African American women

Qualitative research methods were used to examine the role of racial, cultural, and socio-economic group (i.e., communal) identities on perceptions of barriers and control related to traditional and internet resources for seeking health information. Eighteen lower income, African American women participated in training workshops on using the internet for health, followed by two focus groups. Transcripts were analyzed using standardized coding methods. Results demonstrated that participants perceived the internet as a tool for seeking health information, which they believed would empower them within formal healthcare settings. Participants invoked racial, cultural, and socio-economic identities when discussing barriers to seeking health information within healthcare systems and the internet. The findings indicate that the internet may be a valuable tool for accessing health information among lower income African American women if barriers are reduced. Recommendations are made that may assist health providers in improving health information seeking outcomes of African American women

How Bioethics Principles Can Aid Design of Electronic Health Records to Accommodate Patient Granular Control

Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was adopted recently by a team of informaticists designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be in this process, especially when principles conflict. For instance, while the ethical principle of respect for autonomy supports a robust system of granular control, the principles of beneficence and non-maleficence counsel restraint due to the danger of patients being harmed by restrictions on provider access to data. Conflict between principles has long been recognized by ethicists and has even motivated attacks on approaches that state and apply principles. In this paper we show how using ethical principles can help in the design of EHRs by first, explaining how ethical principles can and should be used generally, and then by, discuss how attention to details in specific cases can show that the tension between principles is not as bad as it initially appeared. We conclude by suggesting further ways in which the application of these (and other) principles can add value to the ongoing discussion of patient involvement in their health care. This is a new approach to linking principles to informatics design that we expect will stimulate further interest

Reputation of Oral and Maxillofacial Surgery in the UK:the patients' perspective

Our intention is to shed theoretical and practical light on the professional reputation of Oral and Maxillofacial Surgery (OMFS) in the UK by drawing on theories from management literature, particularly concerning reputation. Since professional reputation is socially constructed by stakeholders, we used interpretivist methods to conduct a qualitative study of patients (stakeholders) to gain an insight into their view of the profession. Findings from our focus groups highlighted the importance of “soft-wired skills” and showed a perception – reality gap in the interaction between patients and doctors. They also highlighted the importance of consistency, relational coordination, mechanisms to enable transparent feedback, and professional processes of governance. To help understand how best to manage the reputation of the specialty, we also explored how this is affected by the media and the Internet

Improving patient involvement in the lifecycle of medicines : insights from the EUPATI BE survey

EUPATI Belgium (EUPATI.be) is an informal gathering of local partners who are interested in improving patient involvement in healthcare innovation and medicines research and development. EUPATI.be brings together various stakeholders from different areas related to healthcare including patients, academia and industry. In doing so, we create an innovative collaborative approach where actors from different backgrounds work toward improving patient involvement in medical research, and putting the patient at the center of the Belgian healthcare system. Previously, we performed in-depth interviews with a small group of stakeholders on patient involvement. Here, we elaborate on our previous findings by using a nation-wide survey to inquire into Belgian stakeholders' perception on patient involvement. To this end, an electronic survey was available in French, Dutch and English, and accessible for 11 months. Twelve questions were asked, including 11 multiple choice questions and 1 open question. The latter was thematically analyzed according to the framework method. A total of 117 responses were registered and descriptive statistics were performed. The majority of respondents could be categorized into patient, academia and industry, whereas policy makers, payers, and healthcare professionals were underrepresented. We identified several barriers that hamper patient involvement, which were sometimes more reported by specific stakeholder groups. Next, we found that various stakeholders still consider patient involvement as a passive role, i.e., medical subject in a clinical trial. Respondents also reported that the role of the various stakeholders needed more clarification; this was also confirmed by the level of trust amongst the various stakeholders. Existing and the wish for more collaboration with the various stakeholders was reported by almost all respondents. Based on this survey, we can define the potential of involving patients in the medical research and development in the Belgian landscape. Our results will help to understand and tackle the various barriers that currently hamper patient involvement, whilst highlighting the need for a collaborative landscape from the multi-stakeholder perspective