Menopause, a significant life transition for half the global population, intersects biological, cultural and social dimensions. Despite its universal occurrence, menopause research has historically been dominated by biomedical perspectives, often neglecting women's voices and diverse experiences. This article highlights the importance of including women's perspectives in menopause research to ensure relevance, accuracy and equity. It explores cultural variations in menopause experiences, the impact of socioeconomic status and the often-overlooked emotional and psychological dimensions. This article advocates for participatory approaches, emphasising that women's involvement enhances research design, implementation and policy development. Evidence-based interventions that are tailored to the individual can better address the diverse needs of menopausal women. The discussion extends to addressing health disparities, calling for inclusive research and policies to ensure equitable access to care. Ultimately, empowering women through co-designed research and inclusive policies can transform the menopause journey into an enriching life phase, promoting resilience and inclusivity across communities. This paradigm shift in menopause research and policy highlights the need for diversity, collaboration and evidence-based approaches to improve health outcomes and quality of life for all women.
This article has been informed by a menopause service user group who discuss their experiences of menopause. The group was formed because of initial qualitative research and now meet on a regular basis to co-design and co-produce activities that inform ongoing research for the menopause taskforce.
Men with prostate cancer (PCa) and their support providers face challenges in accessing high-quality, impartial information tailored to their specific needs to enhance their overall care and decision-making. We describe the development, piloting and evaluation of the co-designed web portal ‘BroSupPORT’.
IT teams developed and integrated BroSupPORT into the Victorian Prostate Cancer Outcomes Registry (PCOR-Vic) electronic patient-reported outcome follow-up process. A comparator tool was built enabling men to compare their patient-reported outcome results against men of similar age, risk profile and after the same treatment. PCOR-Vic participants were invited to access BroSupPORT after 12 months of follow-up patient-reported outcome measure completion. Factors associated with consent to BroSupPORT were determined using logistic regression. Portal access data were gathered from PCOR-Vic data extracts and Google Analytics. A survey on portal exit and 2 weeks after consent was used to collect feedback.
Over a 4-month pilot, 331/583 (57%) men consented to accessing BroSupPORT. Among those men who accessed the portal, the majority (209/331 =63%) were diagnosed in a private hospital and resided in a major city (214/331=65%). On average, men spent 3:20 min on the portal, with sexual function aspects receiving the most attention. Twenty-three percent of men revisited the portal during the pilot. Most men found the portal easy to use, reassuring and informative, while 9% found the patient-reported comparisons difficult to interpret.
A patient portal—enabling men to compare their patient-reported outcomes with other similar men and providing access to information and resources—may be a scalable solution in addressing the complex supportive care needs of men with PCa on a population basis.
Disabled public contributors continue to experience challenges with inclusion, despite inclusive patient and public involvement (PPI) being regarded as the gold standard in research practice and despite disabled PPI contributors often making up a significant proportion of all public contributors [1]. With the recent Disability Framework from the National Institute for Health and Care Research (NIHR), which commits to disability inclusion in health and healthcare research [1], it is timely to reflect on the current situation.
This article is written in the first person by Sandra Paget and Agata Pacho, who share their perspectives as a PPI contributor and an academic leading PPI, respectively. Sandra is an experienced reviewer for the NIHR and has collaborated with academics across the UK. Having lived with a rare neurological condition since early childhood, she founded the original Buckinghamshire Neurological Alliance and served on the Executive Committee of the National Neurological Alliance, representing Regional Neurological Alliances. In this article, Sandra reflects on instances where her ability and willingness to contribute to research were limited by accessibility barriers or a lack of adequate access. She argues that these barriers not only affect individual PPI activities but also have a long-term impact on healthcare services, making it harder for disabled people to live independently for longer. Agata, an Assistant Professor at the London School of Hygiene & Tropical Medicine (LSHTM), leads PPI for the NIHR Policy Research Unit in Policy Innovation and Evaluation (PIRU). Here, Agata discusses how the notion of reasonable adjustments may, in certain cases, be unhelpful or even counterproductive to fostering inclusivity within PPI. Instead, Agata suggests that embedding a duty of care into how PPI is conducted could be a more effective way to break down barriers and ensure greater accessibility for disabled contributors.
Sandra Paget: conceptualisation, writing–original draft, writing–review and editing. Agata Pacho: writing–review and editing, writing–original draft.
The authors have nothing to report.
The authors declare no conflicts of interest.
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