FreshRSS

🔒
❌ Acerca de FreshRSS
Hay nuevos artículos disponibles. Pincha para refrescar la página.
AnteayerTus fuentes RSS

Putting the patient at the centre: a call for research involvement of nurses, midwives and allied health professionals working in genomics

Por: Cowley · L. · Henriques · S. · Roberts · J. · Monje-Garcia · L. · Nolan · J. · Lubasch · K. · Theobald · R. · Greer · R. · Fennell · N. · Clarkson · A. · Clapham · M. · Chilton · S. · Allon · R. · Stopford · C. · Pierce · H. H. · Holliday · D.
Introduction

We report the collaborative views of a group of nurses, midwives and allied health professionals (NMAHPs) in the UK who have a genomics research remit or interest. Our group includes genetic counsellors under this diverse category of healthcare workers.

This group came together as part of the National Institute for Health and Social Care Research (NIHR) Genomics Research National Specialty Group. After responding to a survey to elicit the views of NMAHPs working in genomics, some of the original 45 respondents, along with others who learnt of the project by word of mouth, have worked together to produce this article.

Objective

The paper aims to set out in clear terms the value of NMAHPs to research that supports the patient-centred implementation of genomics in the National Health Service (NHS).

Key argument

We discuss four potential areas where NMAHPs, in particular, can contribute to the research. These are patient perspectives and epistemic justice, psychosocial impacts, the familial nature of genomics and equity. We argue that this group (NMAHPs) represents a potentially underused resource for the NHS as it seeks to ensure that advances in genomics are translated into patient benefit.

Conclusions

We propose that NMAHPs, with our research expertise, are well placed to shape and deliver a research agenda that explores models of patient-centred care in the genomics era. We call for increased funding for NMAHP research roles and funding opportunities to deliver this fundamental work.

Framework to guide the use of mathematical modelling in evidence-based policy decision-making

Por: Oliwa · J. · Guleid · F. H. · Owek · C. J. · Maluni · J. · Jepkosgei · J. · Nzinga · J. · Were · V. O. · Sim · S. Y. · Walekhwa · A. W. · Clapham · H. · Dabak · S. · KC · S. · Hadley · L. · Undurraga · E. · Hagedorn · B. L. · Hutubessy · R. C.
Introduction

The COVID-19 pandemic highlighted the significance of mathematical modelling in decision-making and the limited capacity in many low-income and middle-income countries (LMICs). Thus, we studied how modelling supported policy decision-making processes in LMICs during the pandemic (details in a separate paper).

We found that strong researcher–policymaker relationships and co-creation facilitated knowledge translation, while scepticism, political pressures and demand for quick outputs were barriers. We also noted that routine use of modelled evidence for decision-making requires sustained funding, capacity building for policy-facing modelling, robust data infrastructure and dedicated knowledge translation mechanisms.

These lessons helped us co-create a framework and policy roadmap for improving the routine use of modelling evidence in public health decision-making. This communication paper describes the framework components and provides an implementation approach and evidence for the recommendations. The components include (1) funding, (2) capacity building, (3) data infrastructure, (4) knowledge translation platforms and (5) a culture of evidence use.

Key arguments

Our framework integrates the supply (modellers) and demand (policymakers) sides and contextual factors that enable change. It is designed to be generic and disease-agnostic for any policy decision-making that modelling could support. It is not a decision-making tool but a guiding framework to help build capacity for evidence-based policy decision-making. The target audience is modellers and policymakers, but it could include other partners and implementers in public health decision-making.

Conclusion

The framework was created through engagements with policymakers and researchers and reflects their real-life experiences during the COVID-19 pandemic. Its purpose is to guide stakeholders, especially in lower-resourced settings, in building modelling capacity, prioritising efforts and creating an enabling environment for using models as part of the evidence base to inform public health decision-making. To validate its robustness and impact, further work is needed to implement and evaluate this framework in diverse settings.

Patient Experiences of Receiving Stroke Discharge Information in Accordance With Preferences

ABSTRACT

Aims

To examine survivors' experiences of discharge information including risk communication after hospitalisation for a stroke and the characteristics associated with receiving information in accordance with their preferences.

Background

With advances in acute stroke care and an ageing population, the number of survivors of stroke is increasing. It is important that healthcare providers ensure patients have adequate information after a stroke-related hospitalisation.

Design

Cross-sectional study.

Methods

Adults recently discharged after a stroke from eight Australian hospitals were mailed a survey. Items examined risk and discharge care information, with participants asked to indicate both their preferences for and receipt of the information. Concordance with preferences was calculated, and characteristics associated with information preference concordance were assessed with binomial logistic regression. Study reported in accordance with STROBE Checklist.

Results

Of 1161 eligible patients invited, 403 (35%) completed the survey. All items were endorsed by 80% or more of respondents as being wanted. However, for all items, fewer respondents reported the care as received. Only 28% of participants received information on all five items according to their preferences. Hospital site, Body Mass Index and age were statistically significantly associated with participants receiving information in accordance with their preferences.

Conclusion

Most participants indicated a preference to receive recommended discharge information. Findings suggest that patients may benefit from increased information provision prior to hospital discharge after stroke.

Relevance to Clinical Practice and Patient Care

Nurses have an important role in the provision of stroke care and information. The findings of this study may be used to improve the provision of post-hospital discharge care and support for survivors of stroke, and assist in identifying patients at lower odds of experiencing information aligned with their preferences and who may benefit from support.

Reporting Method

Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist for cross-sectional studies.

Patient or Public Contribution

No patient or public contribution.

❌