New best practice guidance for public involvement
Created on Tuesday, 09 Jul 2019.
Public Involvement |
NHS Health Research Authority have launched new guidelines on how to involve patients and the public well in research.
The new webpages introduce four key principles for best practice in public involvement:
- Involve the right people – people who have lived experience relevant to the health condition or social care situation being researched, and to the people the study will aim to recruit as participants
- Involve enough people to provide a reasonable breadth and depth of views on the issues that are likely to be important to the people the study will aim to recruit, and who it is intended to benefit
- Involve those people enough in as many aspects of the study as is feasible, productive, and appropriate to the research - and at the right times
- Describe in your application how it helps using the question specific guidance in the Integrated Research Application System (IRAS) to make it clear how involving people well helps to address potential ethical issues
New NIHR Patient Engagement in Clinical Development Service begins roll out
Created on Tuesday, 14 May 2019.
A new NIHR initiative is bringing patients and life science companies together earlier in the clinical development process. The aim of the Patient Engagement in Clinical Development Service is to facilitate patient involvement before a study's protocols are finalised to help make commercial clinical research more patient-friendly, and achieve better recruitment and retention in the long term.
Being inclusive in Public Involvement in Health Research
Created on Monday, 18 Mar 2019.
NIHR INVOLVE have published 'Being Inclusive in Public Involvement in Health Research guide'. It highlights twelve things to consider when planning your public involvement.
BAME toolkit toolkit to increase participation in health and social care research
Created on Thursday, 14 Mar 2019.
This toolkit aims to capture such best practice and provide researchers with a framework on how to improve the participation of BAME groups in research.
Use the toolkit to develop more relevant research questions, consider engagement of BAME groups in a more structured way, and provide tips on better participation and dissemination of research findings.
The toolkit covers:
- Section 1: Consideration of the communities which your research needs to involve.
- Section 2: Undertaking effective patient and public involvement (PPI) in research
- Section 3: Conducting effective recruitment in BAME communities
- Section 4: Ensuring cultural competency in the conduct of your research
- Section 5: Providing effective feedback to research participants
- Section 6: Recognising the importance of recruiting BAME communities in research: preparing a grant application
- Top Tips
guidance on the roles and responsibilities of PPI Co-applicants
Created on Wednesday, 06 Mar 2019.
The guidance on the roles and responsibilities of PPI Co-applicants have now been published. Hopefully this will provide some much needed clarification on the subject.
Summary of key points:
- There is no formal requirement to include a public co-applicant as part of the research team.
- Where a public co-applicant is included in a study,a clear description of their role and the reasons why a public co-applicant is joining the team is required. This should express the differences in their role from that of other members of the public involved in the study. Without this information, the presence of a public co-applicant can be seen as tokenistic.
- The inclusion of a public co-applicant should not be the only contributionfrom members of the public. Good public involvement includes of a diverse range of views, rather than a single perspective.
New recommendations launched to improve researchers’ feedback to patients and the public shaping studies
Created on Monday, 11 Feb 2019.
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
Created on Monday, 11 Feb 2019.
Public Involvement |
The site offers a range of functions:
- search for learning resources - guidance, reports, toolkits, books, websites, videos, blogs, MOOCs, etc
- recommend resources that you have found useful - add them to the site so that others can benefit
- search training sessions - see what's coming up in your area, or get inspiration about what training you might want to offer
- add information about training sessions that you are arranging - let people know what you doing and inspire them to do something similar (or invite others to attend)
- find information about training providers - experienced trainers who can help deliver training sessions on public involvement or associated areas.
Guidance on public co-applicants
Created on Friday, 18 Jan 2019.
This guidance is intended to help:
- Researchers wanting to include a public co-applicant in a study
- Public contributors wanting to become a co-applicant
- Research staff who coordinate public involvement activities or advise on funding applications
- Those working in or with research organisations to review or process research applications.
Learning for involvement website
Created on Thursday, 20 Dec 2018.
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
Created on Tuesday, 12 Jun 2018.
Public Involvement |
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.