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ObjectivePatient ownership of disease is vital in rare diseases like primary biliary cholangitis (PBC). This survey of UK members of the PBC foundation aimed to assess patients’ perception of their disease management, focusing on key biomarkers and problematic symptoms.DesignRegistered PBC foundation members were surveyed on their experiences on their most recent clinic visit, covering the type of hospital and clinician and whether biochemical response and symptom burden were discussed, including who initiated these conversations. Respondents were also asked about their willingness to initiate these conversations.ResultsAcross 633 respondents, 42% remembered discussing alkaline phosphatase, the key biochemical response measure, and the majority of discussions were initiated by the healthcare provider. 56% of respondents remembered discussing itch, a key PBC symptom. There was no distinction between the grade of healthcare professional, but both patients and clinicians were significantly more likely to discuss symptoms over disease progression. Reassuringly, 84% of respondents felt willing to initiate conversations about their illness, regardless of the grade of managing clinician.ConclusionsThis work lays a positive foundation for patient education and empowerment projects, likely to improve clinical outcomes. Key aspects of management (biochemical response to treatment and symptom burden) should be emphasised as topics of discussion to both patients and clinicians managing PBC. We suggest a simple cue card to prompt patient-led discussion.

Background The rise of social media [SoMe] has changed medical education practice, possibly facilitating learning through conversational interaction, social feedback and relationships. Usage of newer SoMe tools like Instagram and Snapchat has not been scrutinised. This study aimed to understand how medical students may use newer SoMe tools, specifically Twitter, Instagram & Snapchat, in their learning, in the context of a parallel SoMe course. Methods An optional, parallel SoMe course was established at Newcastle University Medical School. 301 fourth-year medical students were invited to engage using Twitter, Snapchat and Instagram. Evaluation adopted a mixed methods approach, gathering SoMe analytics and survey data as well as qualitative, free-text responses from a questionnaire and focus-group discussion. Results Live-tweeting lectures featured 95 facilitator tweets, with five replies by students. 22 Instagram posts received no student responses, and three Snapchat stories were viewed 15,312 times, with 212 screenshots taken. Of questionnaire respondents, 75% [n=66] stated they engaged with content. Framework analysis of free-text responses and focus group discussion identified peer influence, fear of exposure, cognitive load and curiosity as drivers in new SoMe use.

Background Over 6000 people are on the United Kingdom organ transplant waiting list, and approximately three people die each day due to a lack of donors. Social deprivation status has been shown to affect registration. The aim of this study was to evaluate the effectiveness of school level education at increasing awareness of the issues surrounding organ donation and organ donor registration, and the effect of socioeconomic deprivation and age has on these outcomes. Methods A 15‐minute presentation about organ donation and the issues in transplantation was given to secondary school students from the United Kingdom. An optional questionnaire was then distributed. Results 1155 paper questionnaires were completed from nine schools. The average age was 15.5 (SD = 0.5) years. Before the presentation, 10% of students were on the ODR. Following the presentation, the number of students who were on the ODR or planned to join significantly increased to 56%, independent of age (P < 0.0001). Similarly, there was a significant increase in Likert scores for awareness of the issues in transplantation, independent of age (P < 0.0001). Conclusions This early educational presentation significantly increased awareness of the issues in transplantation and planned organ donor registration, independent of age and deprivation.

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