Guidance for Researchers: Feedback is a new tool providing researchers advice on the best ways to ensure patients, carers, service users and members of public contributing to their work are kept informed of research progress and their input is formally acknowledged.
Public contributors are involved at all stages of the research cycle, from project design, board and panel membership, to taking part in analysis and dissemination. But research by PPI representatives from CLAHRC East of England, who developed the guide, reveals that one-in-five (19%) of public contributors never received feedback for their work.
PPI Learning for Involvement - launch of a new website
The pages sit within the involve website and are full of tools, resources and systems to support public involvement in research. There is a great section featuring top tips on various topics from what makes good public involvement to reviewing research applications. Training programmes and providers are due to be added early next year.
10 ways to illustrate how you used public involvment in your funding aplication
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.
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