Macmillan Cancer Support

Involving patients and the public in health research helps ensure that studies are of high quality and focus on the issues that matter most to the people affected. However, researchers do not always explain clearly how they have done this, making it hard to understand how these voices have shaped the research. This study looked at over 500 research papers published by authors from a UK Russell Group university to see how well the involvement of patients and the public was reported. Only one in five papers mentioned how patients and the public were involved in the main text, and fewer still acknowledged contributions from patients or public partners. Very few papers included patient authors or collaborators from charities and community organisations. Although most papers were freely available online, only 10% included a plain English summary to help non-specialists understand the research. To better understand these findings, the researchers worked closely with a group of patient co-authors who had experience collaborating with university researchers. Together, they developed seven recommendations to help improve how the involvement of patients and the public is reported in future studies. This work highlights the need for universities and research institutes to reflect on their practices and provide better support for researchers to work meaningfully and transparently with patients and the public. Clear and consistent reporting of the involvement of patients and the public is essential for building trust, improving research quality, and ensuring that health research truly serves the communities it aims to help. Patient and Public Involvement and Engagement is important to ensure research addresses the issues that matter most to patients and the public. However, reporting and publishing of these activities is variable and inconsistent. This rapid review aimed to assess how effectively, consistently, and transparently Patient and Public Involvement and Engagement is reported on in papers published by authors affiliated with a heath research institute at a UK Russell Group university. A rapid review of all papers published by institute-affiliated authors (1st August 2021 to 31st December 2024) identified using PubMed. We also consulted with a group of patient co-authors to understand their experiences of being a Patient and Public Involvement and Engagement co-author in collaboration with researchers from the same institute. We retained and reviewed 523 papers for inclusion of Patient and Public Involvement and Engagement. There was significant variation in the reporting across the papers included. Overall, 21% of papers had reference to Patient and Public Involvement and Engagement activity in the main body of the paper, and 17% of papers included Patient and Public Involvement and Engagement in the acknowledgements. In terms of co-authorship, 5% of papers included an author with an affiliation to a charity/non-governmental organisation that represented Patient and Public Involvement and Engagement -related interested, e.g. Alzheimer’s Society, Caribbean and African Health Network and 1% of papers included a patient/lived-experience author. A total of 97% of papers were published open access but only 10% of articles included in this review had a plain English or lay summary. Only one paper included a published GRIPP2 form. The Patient and Public Involvement and Engagement group reviewed and contextualised our findings, supporting analysis and development of seven key recommendations to improve comprehensive, consistent, and transparent reporting of Patient and Public Involvement and Engagement in health research at an institute level. This work demonstrates the challenges that Patient and Public Involvement and Engagement faces and the importance of institutions reflecting on the practices of their academics, and the structures they put in place to encourage good and equitable practices of working with patents and the public.

This study examines how climate variability affects child labor in the Occupied Palestinian Territories, where ongoing conflict and scarce resources amplify household vulnerabilities. Drawing on Palestinian Labor Force Survey data from 2000 to 2018 linked with district-level data on climate indicators, we employ a linear probability model to measure the effects of climate shocks on child labor. Our analysis reveals that rainfall increases child labor, particularly among boys in agricultural roles, while extreme heat discourages it. We also find that girls often respond to rainfall shocks through early marriage. These patterns vary across northern, central, and southern districts, highlighting the importance of place-based adaptation. Our findings show that structural constraints mediate how households cope with environmental stress. The results suggest that effective policy must integrate climate-resilient agricultural investments with targeted social-protection measures, educational support, and gender-responsive programming to mitigate the risks of child labor and early marriage under increasing climate pressure.

<h3>Background</h3> A QI project to develop and roll out a remote monitoring app for use by palliative and end of life care patients to help manage their symptoms during their last months through to their last days of life, whilst remaining in their own home. This is linked to achieving two elements of the government’s 2025 mandate to NHS England (Department of Health &amp; Social Care. Road to recovery: the government’s 2025 mandate to NHS England. GOV.UK. 2025 [internet]) – specifically to move care from hospital into the community, and moving from analogue to digital. <h3>Aims</h3> To Plan-Do-Study-Act (PDSA) a pan-county remote monitoring app. To improve the number of patients achieving their preferred place of death, in comfort, and without their own/carer/staff distress. Using a dashboard visible to community teams, emergency services, hospices, acute care and virtual ward teams. To enhance timely recognition of the deteriorating palliative and end of life care patient in the community, enabling timely management. To improve continuity of care between teams. To reduce inappropriate acute hospital admissions. To address known inequalities in access to treatment due to variation in geographical location; homelessness; cultural needs; diagnosis (e.g. dementia; heart failure; COPD). Improve retention of staff through reduction in moral distress experienced through late notification of patient needs. <h3>Methods</h3> The team hosted patient and carer group discussion and surveys with Healthwatch; internal discussions with nursing teams re willingness to engage with digital technology; subsequently progressed development of the app for non-acute, community based monitoring of two cohorts of patients; each cohort with and without access to 24/7 hub in: a) last days of life and b) last months of life – utilising questionnaires based on Advanced End of Life Care Plan and IPOS (Palliative care Outcome Scale. How to administer POS. 2012 [internet].) respectively. Licences for six months PDSA, commencing June 2025 have been procured. <h3>Results</h3> Initial insights due in October 2025.

<h3>Background</h3> Access to out-of-hours specialist palliative care advice and support is inconsistent across many regions, resulting in avoidable emergency admissions and suboptimal end-of-life experiences. In response, a triumvirate of regional hospices in Staffordshire and Stoke-on-Trent implemented a 24/7 Specialist Palliative Care Advice Line to provide a single point of access for patients, carers, and healthcare professionals. <h3>Aims</h3> This service, operational since December 2023, aims to improve patient outcomes, reduce health system pressures, and align with national policy guidance mandating 24/7 palliative care access. <h3>Methods</h3> In addition to our core daytime services, a single number and overnight component (9pm–9am) was funded by hospices during the pilot phase, with a proposal for Integrated Care Board (ICB) commissioning based on demonstrated impact. <h3>Results</h3> Over a 167-day evaluation period, 1,121 out-of-hours calls were received; 64% required specialist clinical advice, and nearly half originated from patients or carers. Expert review of a random sample showed 72% of activity received therapeutic benefit and 54% prevented emergency service use. Projected impact includes diversion of 846 urgent and emergency care episodes, avoidance of 239 unplanned admissions, and potential indicative annual savings exceeding £936,000. The model supports improved symptom management, preferred place of death, and continuity of care. It is underpinned by consultant oversight, a standardised operating framework, and interoperable call routing infrastructure. <h3>Conclusion</h3> This hospice-led model offers a scalable, cost-effective solution to meet the ICB’s statutory obligations and system-wide objectives to reduce preventable hospital admissions at end of life and improve the experience of patients and their families. The triumvirate successfully gained ICB investment to sustain and expand the service. With increasing demand and a growing cohort of palliative patients, this approach highlights how strategic third-sector partnerships can fill critical service gaps and deliver high-quality, person-centred care around the clock through collaborative working.

The American College of Occupational and Environmental Medicine's (ACOEM) foundation guideline on General Approach to Initial Assessment and Documentation is intended to address the initial approach to assessment of some of the most common occupational medicine clinical problems. This approach includes a medical and occupational history, identification of body part(s) involved, effect of present illness or injury on patient's functionality, screening for disability risk factors that may affect the outcome, a detailed work history including type and duration of exposure. It is also important to maintain good recordkeeping and privacy of records when assessing patients for a work-related injury or illness. The reader is referred to ACOEM's other disorder-specific guidelines for more-specific guidance.

IntroductionThere are estimated to be 3.4 million patients in the UK living after a diagnosis of cancer. We know very little about their quality of life or healthcare usage. Patient-reported outcome measures (PROMs) are tools which help to translate a patient’s quality of life into measurable categories, but how to do this at scale remains underexplored. The study employs a randomised design to assess different engagement strategies for optimising participation, data linkage and questionnaire completion in Northwest London and then nationally, with appropriate research approvals.Methods and analysisWe have designed and implemented an online, patient-completed, randomised observational trial. We will pilot it in Northwest London before national roll-out, using initially the General Practice (GP) record of a cancer diagnosis and then exploring the use of social media. The primary objective is to explore the feasibility of recruiting participants via self-identification or contact from the primary care research network and obtaining consent to link participants’ PROMs responses to their cancer registry records. Data collection occurs through a secure platform, with participants directly responsible for data entry. There is no formal target sample size because this is a feasibility study, and we want to explore how many patients we can recruit. Analyses will be conducted using descriptive statistics, repeated measures multilevel modelling and machine learning techniques. If a substantial difference in responses between randomisation arms is detected, ineffective strategies will be removed. If no clear difference is observed, recruitment will continue with periodic reviews based on response rates and data completeness.Ethics and disseminationThe Study Coordination Centre has obtained approval from the London—Surrey Research Ethics Committee and Health Research Authority. We will publish and disseminate the results in local, national and international meetings, in peer-reviewed journals, on social media and on websites.It has been registered under ‘Investigating Digital Outcomes for Cancer Survivors in the Community’ (NCT06095024).Trial registration numberNCT06095024: Investigating Digital Outcomes for Cancer Survivors in the Community.