Help shape UK clinical trial guidance
The Health Research Authority (HRA) is reaching out to patients engaged in the world of clinical trials to gather thoughts on how best to involve patients and the public in clinical trial design and delivery.
Your shared examples of guidance and resources will contribute to the development of groundbreaking guidelines in collaboration with the Medicines and Healthcare products Regulatory Agency (MHRA).
The survey takes just 15 minutes and will close on Friday 29 September 2023.
All responses will remain anonymous.
If you have any questions about this survey, please contact the HRA Engagement Team by emailing engagement.team@hra.nhs.uk.
Help shape the NIHR Disability Framework
The NIHR Research Inclusion Team are inviting people to participate in a survey aimed at informing the development of the NIHR Disability Framework.This survey will address barriers faced by disabled individuals when engaging with the NIHR, ensuring a more inclusive and accessible research environment.
Following the survey, the NIHR will conduct a series of focus groups with disabled individuals. These focus groups will provide an opportunity for more in-depth discussions of the issues raised in the survey.
If you have specific access needs or prefer to verbally complete the survey please contact surveys@disabilityrightsuk.org.
The survey will close at 5pm on Monday 26 June 2023.
New guidance on payment for public involvement in health and care research
Members of the public involved in health and care research should receive prompt payment for their time and expertise.The current process is often complicated, inconsistently applied, and results in delayed payment, which hinders their participation.
The NHS Health Research Authority have been working closely with the National Institute for Health and Care Research (NIHR) and Health and Care Research Wales to develop clear guidance for organisations on how public contributors should be paid for their involvement.
The ‘Payment for Public Involvement in Health and Care Research: A guide for organisations on employment status and tax’ guidance released recently aims to give organisations the confidence and a clear framework to develop simple and timely payment policies.
This includes guidance on:
- employment status
- tax
- impact on benefits
The guidance has been created in line with Her Majesty's Revenue and Customs (HMRC) guidelines and has also been reviewed by human resources and finance professionals, public involvement leads, policy leads and members of the public with experience of payment issues.
Event: Role of Public Co-applicants and PPI Leads in health and care research
Join us for an online event, hosted by NIHR Research Design Service (RDS), to find out more about the roles of Public Co-applicants and Patient and Public Involvement (PPI) Leads in health and care.
- Date: 24 November 2022
- Time: 10am to 12pm (GMT)
Registration is open to public contributors, researchers and health and social care professionals who want to learn more about PPI Leads and Public Co-applicants, and the support available to them.
The event will provide you with a better understanding of:
- The roles of Public Co-applicants and PPI Leads
- What makes an effective PPI Lead
- How to support Public Co-applicants effectively
Join the UCLPartners Patient, Carer, and Public Advisory Panel
31 March 2022
UCLPartners, an organisation made up of NHS trusts and universities across North and East London, Essex, Bedfordshire and Hertfordshire, are looking for 8-10 people to join a new Patient, Carer and Public Advisory Panel. The panel will meet for 2 hours every 8 weeks. UCLPartners are looking for members of the public interested in improving health and care. Panel members will be paid £25 per hour for their work.
Should PPI be made law?
8 March 2022
The Medicines &Healthcare products Regulatory Agency (MHRA) has suggested making it a legal requirement for PPI in clinical trials as part of proposed legislation. The MHRA is carrying out a consultation on proposals to update the current UK legislation that governs clinical trials.
Involving children in research
8 March 2022
Researchers have argued for the ethical and essential inclusion of children in research as part of the co-development of interventions that directly affect them. In a paper, published in Research Involvement and Engagement, researchers detail the development of the Management and Intervention for Asthma study, which worked with communities to develop a framework for planning health interventions for South Asian children with asthma
Funding uplift for clinical research facility
8 March 2022
The Clinical Research Facility at UCLH has been awarded £10 million in funding to deliver cutting edge early phase health research in areas including cancer and dementia. The award from the National Institute for Health Research (NIHR) for 2022 to 2027 represents a £3.5 million uplift in funding.
Patients in Publications Training
Patient advocates need to publish their own research and survey data, and are invited to be co-authors or peer-reviewers. This open-access course trains patient advocates on how to engage in publications.
