Changes/updates to the SAF, with some specific changes relating to PPI
Created on Tuesday, 30 Jun 2020.
Public Involvement |
- Inclusion of public co-applicants, where appropriate, with a clear description of their role and the reasons why a public co-applicant is joining the team
- PPI Lead - There should be a named person with appropriate skills and experience who is responsible for leading the PPI element within the project. This role should be an adequately costed and resourced research team member who is able to manage the PPI plans and related activities.
- Justification of health/care need - Identify how will the public/patients see this as a need and as a potential improvement to their health and/or lives?
- Project Plan (Patient and Public Involvement):
o show your plans for involving patients/service user, carers and the public at each appropriate stage of the research project lifecycle
o outline how PPI has informed the development of the project so far, including how it has specifically shaped the research question and study design
- Dissemination plans: include details of how you will share with study participants the progress and findings of the study (PPI could inform this)
As stage 1, but also:
- NEW PPI approach, management and support section to include:
- why your approach to patient and public involvement is appropriate, including who will be involved and why
- how you plan to manage and coordinate the patient and public involvement activities
- how you will support and enable patients/service users, carers, the public and members of relevant communities to contribute to your research (e.g. access, payments, training).
- outline plans for the capturing, evaluating and reporting the impact of patient and public involvement activities
- NEW Summary of PPI activities, including
- a summary of the proposed PPI activities embedded throughout the research project lifecycle
- clearly signpost to other sections of the Detailed Research Plan where the PPI is described further in relation to the relevant project stage
- Costings - If voluntary, charity or community groups are supporting the research via activities such as facilitating contact with potential participants, hosting research activities or providing advice, an adequate budget must be included to compensate for their time and resources.
Covid-19 rapid response research calls: views from public contributors
Created on Wednesday, 10 Jun 2020.
- Due to the short turnaround time of one year, the public will want to know what the impact of the study will be on people and communities - what difference will the research make to our lives?
- Lab based studies particularly can benefit from developing a dissemination strategy. The public have a right to know about the impact the research makes and there is also interest for this to happen more meaningfully and at scale.
- Research applicants don’t always demonstrate how they plan to engage and involve people and communities in their study even if they are already doing it - put it in the form.
- Research applicants who have access to established PPIE groups and networks tend to have stronger PPI input in their application - if you don’t have existing groups to reach out to, you can access Covid research specific PPIE groups through the HRA UK Covid-19 PI in Research database
- NIHR has an expectation that there is PPI in every research study, indeed it's listed in the guidance document for the call.
- Applicants need to demonstrate more robustly how they plan to reach out to people and communities from diverse backgrounds particularly from BAME communities, recognizing that this is not a homogenous group.
- Some of the applications are lab-based or involve animals, which is new to some reviewers. Appreciate that PPI is challenging in basic research,and tight timeframe doesn’t allow researchers to learn about PPI. Some of them seem to think that they don’t need to do PPIE. Every case they could have done PPIE had they had the time, resources, inclination.
- Where an application is low in detail, it is usually low in plans for PPIE too.
- This is a great opportunity to dissemination. Lab-based researchers who don’t build in PPI miss the point of what the general public is concerned about.
- Reasonable amount of PPI at the beginning, since then reduction, not sure why this is happening but concerning. Seems to be happening everywhere - HRA, ethics committees are also seeing less PPI.
- Some applicants use the science as an ‘excuse’ for not having PPI. Understand if it’s not possible in the science part but the overarching governance, consent over samples should not be missing.
- Feeling in the PPI area that PPI is still an add-on; some researchers still think that when they need to be speedy, PPI can be dropped.
- Disconnect between seeing patients as participants and thinking that is PPI.
Equality, diversity and inclusion in Patient and Public Involvement and Engagement
Created on Tuesday, 12 May 2020.
Public Involvement |
As part of NIHR's commitment to actively and openly supporting and promoting equality, diversity, and inclusion (EDI) they've produced new Standard Application Form (SAF) guidance that includes improved requirements to will strengthen EDI and patient, public involvement and engagement (PPIE).
A framework for considering who might be involved in research
Created on Wednesday, 01 Apr 2020.
New INVOLVE guidance to be used as a framework to help make decisions about which public contributors you might involve in your research and why.
- There should always be clarity about the purpose of involving specific individuals or groups
- Including a diversity of views and perspectives often helps to improve the research
- Review the way the involvement role and opportunity has been structured to ensure there are not unintended barriers stopping other public contributors from engaging
- People can wear several hats and their contributions may be broader because of the range of their expertise
- The type of lived experience needed will vary depending on the focus of the research
Improving Care by Using Patient Feedback
Created on Thursday, 16 Jan 2020.
Public Involvement |
This review brings together nine recent NIHR studies looking at how NHS organisations use patient feedback to make improvements to services. Evidence ranges from online ratings to real-time feedback in different settings, from hospital wards to general practice and mental health.
This research can help health providers to make best use of patient surveys and other data from patients on their care. Studies found that more effort has been spent on collecting data, with less attention to how it can be used to improve services. Findings included the need to integrate patient experience data and activity with other quality improvement work in trusts. Research also shows the importance of positive feedback and how online and unsolicited responses can be used alongside survey data to make a difference.
Healthwatch reporting tool allows professionals to search patient experience reports
Created on Monday, 16 Dec 2019.
Public Involvement |
The reports library tool aims to help researchers search thousands of reports produced by local Healthwatch. Curently the tool holds 2,391 Healthwatch publications about health and care services, made up of over 420,000 views
What kind of information can you expect to find?
- Across the country, Healthwatch speak to people about their experiences of services, and how care could be improved.
- From mental health, to care homes, to people's experiences of leaving hospital, a whole host of subjects are covered in the reports library.
- There's a local Healthwatch in every area of the country and each one focuses on the issues that matter most to the people in their communities.
- You can also sign up to news alerts for new additions to the tool in your area
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