This is a great article from Health Research Authority on ways to use public involvement to inform your ethical review. You can use the same principles within your funding bid to show what effects the public have had on shaping your application. Public involvement needs to be woven through applications and it is imperative that you show the changes you've made due to the involvement - it's no longer acceptable just to state that you've consulted the public during the design process, details are what will make your application stand out!
How patients shaped the research question or why patients thought the research important (not merely stating that patients thought it important).
How patients shaped the intervention and decided which outcome measures to use in clinical trials.
How patients’ input was used to minimise the burden on participants.
How patients influenced the ethical design of a trial - e.g. whether use of placebo would be acceptable.
Where patients identified that participants might potentially experience distress and what appropriate changes had been made in response.
How practical arrangements were changed to better meet the needs of participants e.g. follow-up clinics at more appropriate times.
How recruitment processes were changed to be sensitive to the emotional and practical needs of potential participants.
How patients were involved in deciding what questions to ask in interviews/ focus groups, rather than only being asked comment on the wording of questions written by researchers.
How patients were involved in designing the protocol and patient facing information from the start, the responses they gave and the changes made as a result.
How patients would continue to be involved in the project at different stages, with a clear explanation of what input was expected and how it might shape future decisions.
Co-design is part of a process that enables those who deliver services and those who receive services to create improvements together. Each person or group is considered to have equally important views. This article shares six tips for healthcare teams to maximise the benefits of co-design and ensure it runs smoothly.
UK Standards for Public Involvement in Health Research
A set of national standards designed to improve the quality and consistency of public involvement in research has been developed through a UK-wide partnership over the last 18 months building on previous work in this area. The partnership brings together members of the public with representatives from the National Institute for Health Research (England), the Chief Scientist Office (Scotland), Health and Care Research Wales and the Public Health Agency (Northern Ireland), working with an independent expert.
The standards aim to provide people with clear, concise benchmarks for effective public involvement alongside indicators against which improvement can be monitored. They are intended to encourage approaches and behaviours that will support this.
The six standards are a description of what good public involvement looks like, designed to encourage self reflection and learning. They are not designed as rules, or to provide fixed ideas about public involvement in research.
Support and learning
Impact of Patient and Public Involvement (PPI): Completing the Feedback Cycle
Public contributors often get involved in the design of a research study or offer comments on funding applications, however they often do not hear if they contributions have been received and if they have been used or seen as beneficial. This guide aims to provide practical tips on the Who, Why, When, What and How researchers could improve their feedback to public contributors.
PPIE annual reports - sharing knowledge, learning and good practice!
Over the last three years the NIHR have publish the patient and public invovment and engagement section of annual reports from their over 100 funded centres, facilities, units and schools showcasing what activites and support are being provided across the country.
The main aim in doing this is to support and promote the sharing of knowledge, learning and good practice across the NIHR and beyond.
All reports from the last 3 years can be found on the NIHR website.
A common standard for the evaluation of public engagement with research
Despite growing interest in public engagement with research, there are many challenges to evaluating engagement. Evaluation findings are rarely shared or lead to demonstrable improvements in engagement practice. This has led to calls for a common 'evaluation standard' to provide tools and guidance for evaluating public engagement and driving good practice. This paper proposes just such a standard. A conceptual framework summarizes the three main ways in which evaluation can provide judgements about, and enhance the effectiveness of, public engagement with research. A methodological framework is then proposed to operationalize the conceptual framework. The standard is developed via a literature review, semi-structured interviews at Queen Mary University of London and an online survey. It is tested and refined in situ in a large public engagement event and applied post hoc to a range of public engagement impact case studies from the Research Excellence Framework. The goal is to standardize good practice in the evaluation of public engagement, rather than to use standard evaluation methods and indicators, given concerns from interviewees and the literature about the validity of using standard methods or indicators to cover such a wide range of engagement methods, designs, purposes and contexts.
Researchers are ‘missing a trick’ with public involvement
A new HRA study has highlighted the fact that health researchers are 'missing a trick' by not demonstrating how patients and the public have contributed to the design and conduct of research.
The study showed that 63% of applicants claimed to have involved the public, but analysis revealed that only 36% of applications reflected the accepted definition of public involvement, with researchers often make simple statements along the lines of ‘Patients and carers were involved in the design of this study’. This makes it difficult to judge whether the involvement has shaped the study design in any way that would make it more ethically acceptable. 18% of researchers who described involvement in the design of their study were planning to do this after REC review. Good practice would be to include involvement before REC review, to improve the ethical acceptability of research and inform the ethical review process.
The SHARED study: public co researchers in dementia research
Co-production is the new buzz word in research but many are unsure as to what it actually entails. Take a look at The SHARED study which is an example of how public co-researchers were involved in developing carer and patient-led recommendations for people with dementia or memory loss returning home from hospital. The article illuminates the experience of public and academic researchers in delivering this research together.
“Public engagement: a practical guide” from Sense about Science and NIHR
The new best practice guide is aimed at helping other researchers involve the public in communicating findings from the earliest stages of their projects and on the most challenging of subjects. It features a five-step process to present research information in a way that is shaped from the outset by people who will use it. The advice given ranges from initial scoping of the subject to planning and user-testing materials to present findings in a clear and accessible way.
Update on payment for involvement in research - an agreed statement and INVOLVE's understanding of the changes to HMRC Inland Revenue IR35 regulations
Changes to HMRC regulations on ‘contractors and intermediaries’ have led to some institutions processing payments for involvement in research through PAYE. INVOLVE has discussed these changes with HMRC and the Dept of Health’s Tax Advisor, and produced an agreed statement along with INVOLVE’s understanding of how these regulations might relate to payment for involvement.
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