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Multiple sclerosis (MS) is a chronic neurological condition that affects more than 150 000 people in the UK, but there is relatively little known about the experiences of people with South Asian heritage who are affected by the condition. In this article, the author explores how being of South Asian heritage has shaped her experience of living with MS and what MS nurses can do to better support people like her. [ABSTRACT FROM AUTHOR]

With scientific advances during the COVID-19 pandemic and expansion of artificial intelligence (AI) in research, there has been a simultaneous increase in misinformation about data collection, privacy, and sharing in clinical trials. This increase has been com-pounded by general mistrust in the clinical research industry partly because of problematic practices, such as data manipulation, withholding of safety information, and inaccurate or even non-existent results reporting. All these issues contribute to the public, patients, caregivers, and even healthcare professionals being inadequately informed about clinical research and related data usage. Through transparency, clarity, and honesty, trust can be rebuilt. Recognising the clinical research landscape has changed over the last decade and that currently available information is not developed or formatted in ways that can be easily understood, we describe creating widely accessible videos and infographics to support data literacy, utilising the most recent tools and technology for content development and dissemination. [ABSTRACT FROM AUTHOR]

Background and purpose: The rapidly evolving landscape of effective treatment options in multiple sclerosis has led to a shift of treatment objectives towards a treat‐to‐target approach aiming to suppress disease activity below the level of detectability early during the disease. To enable treat‐to‐target, a thorough reappraisal of available outcome measures with respect to their ability in this regard is required. Methods: To that end, we conducted a comprehensive systematic literature review of more than 1000 studies using PRISMA (Preferred Reporting Items for Systematic Reviews and Meta‐Analyses) 2020 methodology focusing on underlying evidence as well as utility and implementability in clinical practice. Results: From there, we propose a set of measurable outcomes for everyday routine clinical practice as well as advanced/aspirational measurables requiring additional resources. We also outline remaining knowledge/technology gaps that need to be overcome to enable a treat‐to‐target approach. Conclusions: This work provides the basis for an evidence‐based definition of outcome targets for relevant stakeholders and regulatory authorities. [ABSTRACT FROM AUTHOR]

Key points: Patient authorship is a new topic in medical publishing, with the number of patient‐authored publications growing rapidly.Publication stakeholders (e.g., editors, publishers, funders, researchers) should be aware of the legitimacy of patient authorship.Practical actions can be taken by different publication stakeholders to encourage and support patient authorship—ethically and effectively.Patient authorship can contribute to enhancing diversity, equity, and inclusion in medical publishing.Research on patient authorship could be strengthened with consensus on publication tagging practices (e.g., affiliation terms) and the use of artificial intelligence.A plain language summary of this article and the GRIPP2 form for reporting patient involvement are available as supplementary information. [ABSTRACT FROM AUTHOR]

This document contains summaries of various studies related to medical communications. The studies cover topics such as the use of artificial intelligence (AI) in generating plain language summaries (PLS) of scientific manuscripts, the development of reporting guidelines for consensus methods in biomedical research, patient awareness of PLS for diabetes information, and the use of AI in medical communications. Other studies explore the readability of patient-level summaries, author satisfaction with authorship algorithms, guidelines for using AI tools in biomedical journals, barriers to developing enhanced publication content, and the use of generative AI for PLS abstracts. The document also discusses the use of graphical abstracts and PLS in nephrology and gastroenterology journals, as well as the quality and efficiency of generative AI tools for content generation in medical publications. The studies provide valuable insights into various aspects of medical communications and emphasize the importance of clear and engaging content. [Extracted from the article]

Development of a patient publication steering committee (PPSC) is an innovation in industry publication practices. In this brief article, we summarise how UCB Pharma, a global biopharmaceutical company, plans to partner with patients to establish a PPSC and share insights on how medical writers could support PPSCs. The purpose of a PPSC is to plan and oversee the timely and ethical development of high-quality publications on disease burden and the patient journey, as identified by patients. In this case study, we collaborated with key internal and external stakeholders, including medical writers, to identify the key roles, governance, and documentation required for a PPSC. We have demonstrated that it is feasible to develop a PPSC framework that will guide the ethical and effective development of a patient-led publication plan. Medical writers would work within this framework to help develop and implement the plan. [ABSTRACT FROM AUTHOR]

Objective: To assess the clinical and cost-effectiveness of cognitive rehabilitation for attention and memory problems in people with multiple sclerosis. Design: Multicentre, pragmatic, randomized controlled trial. Setting: Community Participants: People with multiple sclerosis aged 18–69 years, who reported cognitive problems in daily life and had cognitive problems on standardized assessment. Interventions: A group cognitive rehabilitation programme delivered in 10 weekly sessions in comparison with usual care. Main measures: The primary outcome was the Multiple Sclerosis Impact Scale Psychological subscale at 12 months after randomization. Secondary outcomes included measures of everyday memory problems, mood, fatigue, cognitive abilities and employment at 6 and 12 months after randomization. Results: In all, 245 participants were allocated to cognitive rehabilitation and 204 to usual care. Mean Multiple Sclerosis Impact Scale Psychological at 12 months was 22.2 (SD = 6.1) for cognitive rehabilitation and 23.4 (SD = 6.0) for usual care group; adjusted difference −0.6, 95% confidence interval (CI) = −1.5 to 0.3, P = 0.20. No differences were observed in cognitive abilities, fatigue or employment. There were small differences in favour of cognitive rehabilitation for the Multiple Sclerosis Impact Scale Psychological at 6 months and everyday memory and mood at 6 and 12 months. There was no evidence of an effect on costs (−£808; 95% CI = −£2248 to £632) or on quality-adjusted life year gain (0.00; 95% CI = −0.01 to 0.02). Conclusion: This rehabilitation programme had no long-term benefits on the impact of multiple sclerosis on quality of life, but there was some evidence of an effect on everyday memory problems and mood. [ABSTRACT FROM AUTHOR]

We examine the trend for increasing and more transparent patient information and ask how close we have come in the last few years to producing useful and meaningful information for patients. We also outline the challenges faced by medical writers and the pharmaceutical industry as a whole in trying to comply with recent European require ments for the creation of lay summaries of key regulatory submission documents. The risk management plan and the results section describe outcomes of clinical trials – and what this means for patients – who are the target audience that this monumental effort is intended to help. [ABSTRACT FROM AUTHOR]