Resilient, cohesive communities are important contributors to the health and well-being of their residents (Ehsan, Klaas, Bastianen, & Spini, 2019). Advances in social psychology suggest a multitude of physical and mental health outcomes derive from meaningful belonging in social groups within a range of contexts (Haslam,
BackgroundResearch into rare diseases is becoming more common, with recognition of the significant diagnostic and therapeutic care gaps. Registries are considered a key research methodology to address rare diseases. This report describes the structure of the Rare UK Diseases Study (RUDY) platform that aims to improve research processes and address many of the challenges of carrying out rare musculoskeletal disease research.RUDY is an internet-based platform with online registration, initial verbal consent, online capture of patient reported outcome measures and events within a dynamic consent framework. The database structure, security and governance framework are described.ResultsThere have been 380 participants recruited into RUDY with completed questionnaire rates in excess of 50 %. There has been one withdrawal and two participants have amended their consent options.ConclusionsThe strengths of RUDY include low burden for the clinical team, low research administration costs with high participant recruitment and ease of data collection and access. This platform has the potential to be used as the model for other rare diseases globally.
Changes in the organization of primary care in the UK are driven by a need to improve access and availability, but doctor-patient relationships may suffer. To investigate the importance of such relationships in a different setting, we analysed focus-group data obtained in a primary care facility in the USA (Rochester, NY). The findings pointed to three key factors in these relationships-namely, an asymmetry of perceptions on the two sides, belying the notion of a meeting of experts; the importance on both sides of 'liking'; and the value set by both parties on development of trust. The last two of these factors are probably related to continuity of care, now under threat.
Covid-19 has produced the biggest change in the organisation of UK general practice for 200 years. As in many countries, face-to-face consultations have fallen to about 10% of their previous level and most contacts are now provided remotely using symptom checkers, electronic messaging, and phone or video consultations. Several of these changes may be permanent, with fewer face-to-face consultations in future. Opportunity and danger are two aspects of change: both now apply to general practice. GPs currently have quieter waiting rooms, fewer locums, and reduced regulatory burdens such as from Care Quality Commission inspections. However, normal workload is returning, and while remote consulting makes access much easier for some patients, there is a real risk that general practice will suddenly become less personal. Worryingly, remote consultations may increase overall GP workload and exclude patients without internet access. 1
Taken as prescribed, that is, with high adherence, combination antiretroviral therapy (ART) has changed HIV infection and disease from being a sure predictor of death to a manageable chronic illness. Adherence, however, is difficult to achieve and maintain. The CAPRISA 058 study was conducted between 2007 and 2009 to test the efficacy of individualized motivational counselling to enhance ART adherence in South Africa. As part of the overall trial, a qualitative sub-study was conducted, including 30 individual interviews and four focus group discussions with patients in the first 9 months of ART initiation. Data were inductively analyzed, using thematic analysis, to identify themes central to ART adherence in this context. Four themes emerged that characterize the participants' experiences and high motivation to adhere to ART. Participants in this study were highly motivated to adhere, as they acknowledged that ART was 'life-giving', in the face of a large amount of morbidity and mortality. They were further supported by techniques of routine remembering, and highlighted the importance of good social support and access to supportive healthcare workers, to their continued success in negotiating their treatment. Participants in the current study told us that their adherence motivation is enhanced by free accessible care, approachable and supportive healthcare workers, broad social acceptance of ART, and past first-hand experiences with AIDS-related co-morbidity and mortality. Programs that include specific attention to these aspects of care will likely be successful in the long term.
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