Evaluation of the quality of patient involvement in a patient-led analysis of the lived experience of a rare disease.

Background: Patients themselves are best placed to provide insights on the lived experience and to lead the analysis of such insights to bring the patient voice into peer-reviewed literature. In doing so, they can meet the authorship criteria for subsequent research publications. It is important to evaluate patient engagement to identify ways to improve future collaborations.

A practical 'How-To' Guide to plain language summaries (PLS) of peer-reviewed scientific publications: results of a multi-stakeholder initiative utilizing co-creation methodology.

Background: Peer-reviewed scientific publications and congress abstracts are typically written by scientists for specialist audiences; however, patients and other non-specialists are understandably interested in the potential implications of research and what they may mean for them. Plain language summaries (PLS)-summaries of scientific articles in easy-to-read language-are emerging as a valuable addition to traditional scientific publications. Co-creation of PLS with the intended audience is key to ensuring a successful outcome, but practical guidance on how to achieve this has been lacking.

Hidden in plain sight? Identifying patient-authored publications.

Background: Patient advocates are increasingly authoring peer-reviewed publications that could enhance patient care and understanding of the lived experience. Although patient authorship may be seen as an innovation in the peer-reviewed publication environment and some may not be aware of or accept patient authorship, we know patient-authored publications exist. However, identifying patient-authored publications is often challenging and time-consuming.

Plain language summaries of publications of company-sponsored medical research: what key questions do we need to address?

Objectives: We aimed to gather multi-stakeholder insights on key issues relating to plain language summaries (PLS) of company-sponsored medical research to inform future industry recognized guidelines.

Methods: We identified diverse stakeholders based on expertise, familiarity with PLS, and geographical location. A Working Group ( = 11) with extensive expertise in PLS developed an initial list of 14 questions relating to PLS, which were shared with stakeholders.

The Lived Experience of Myasthenia Gravis: A Patient-Led Analysis.

Introduction: A greater understanding of the reality of living with myasthenia gravis (MG) may improve management and outcomes for patients. However, there is little published data on the patient perspective of how MG impacts life. Our objective was to reveal the lived experience of MG from the patient perspective.

Multicenter randomized controlled trial of the management of unresectable malignant mesothelioma proposed by the British Thoracic Society and the British Medical Research Council.

Malignant mesothelioma is almost invariably fatal. The incidence of the disease is rising rapidly in many countries, and there is no generally accepted standard treatment for patients with unresectable disease. According to current British Thoracic Society (BTS) guidelines, patients should be treated with active symptom control (ASC), involving (1) regular follow-up in a specialist clinic; (2) structured assessments of physical, psychological and social problems with appropriate action; (3) rapid involvement of additional specialists; and (4) parallel nursing support.