PPI Bulletin

January 2023

Dear All...

Welcome to the first bulletin of 2023. We have decided to fully merge PPI and EDI within our bulletin given the importance of both to NIHR and the research it supports. Within the RDS SW we are keen to drive forwards our efforts around EDI – providing training, signposting to resources and information with the aim of increasing diversity within health and social care research. We set up an EDI group several months ago and are currently in the process of creating Terms of Reference, increasing and diversifying our membership, and identifying our priorities over the remaining months of the RDS contract. We already have some public representation on this group but will be looking to increase this soon.

Please see below for links to the webinar and FAQs from the RDS national webinar on the role of the PPI lead and public coapplicants I promised in our last bulletin. Please also take a look at the Health Research Authority Hallmarks for People-Centred Clinical Trials. We also share an NIHR blog which addresses race equity in health research.

We thought it might be helpful to share with you any recent publications around PPI and EDI. Please scroll down to find links to two papers. One is an evaluation of the Include framework and the other describes the development of a toolkit for increasing the participation of BAME groups in health and social care research. Both are free to access and download.

Jo

RDS SW Updates

National Updates

Webinar on the Role of the PPI lead and the public co-applicant (Nov 2022)

I am delighted to be able to share with you the updates on the national RDS webinar held last November on “The role of the PPI Lead and the Public Co-applicant in health and care research”. The audio recording and slide presentations from the event can be accessed here: The Role of the Patient and Public Involvement (PPI) Lead - YouTube

The questions submitted in the chat have also been answered by the panel and turned into FAQs which may be found here: The Role of Public Co-applicants and Public
Involvement Leads in health and care research – FAQs | Research Design Service North West

NIHR blog: Race equity in health research

Professor Mala Rao OBE established the Ethnicity and Health Unit, under the Department of Primary Care and Public Health, at Imperial College London and NIHR ARC Northwest London to apply an evidence-based approach to addressing ethnic health inequalities. In this blog she explores the scale of the problem in the research arena and issues a rallying call for action. You can find the blog here: Race equity in health research: Good for the public and the workforce

Health Research Authority – Hallmarks of people-centred clinical trials

Follow the link below to read about the hallmark for EDI. You can navigate to the other hallmarks from this page too. These are Maximises inclusion, equity and diversity - Health Research Authority. HRA are also seeking feedback on participation in clinical research and their efforts to increase the diversity of participants. If you would like to provide feedback follow this link to the survey: Share your feedback and help us improve clinical research.

Recent Publications

• The INCLUDE team have also conducted an evaluation of the INCLUDE ethnicity framework. The findings of this highlight the need for refinement of the framework and wider structural barriers. This also includes researchers’ views on how the NIHR should facilitate the embedding of EDI in proposals. You can access this paper here.
  
  
• Farooq and co-authors have developed a toolkit for increasing the participation of BAME communities in health and social care research. The paper is freely available here: Developing a toolkit for increasing the participation of black, Asian and minority ethnic communities in health and social care research - PubMed

Opportunities to get involved

• NIHR Public Committee Member
  Do you have an interest in health, social care or public health? NIHR are looking for members of the public who are able to use their own experiences to improve the research they wish to fund. Find out more.
  
  
• Health and Care Wales are looking for an adult who has undergone an acute medical emergency to comment on and review an electronic research application, of about 25 pages. More Info.
  
  
• Support staff recruitment in the Health Research Authority. They are looking for around 10 additional members of the public to register their interest to support staff recruitment. More info.
  
  
• Helping to design a study about safe administration of injectable medicines in hospital. Share your views on some research that Imperial College London are planning, during an online focus group discussion. More info.
• Health and Care Wales are looking for Adults who are over 65 years of age and are awaiting an elective surgery to comment on and review an electronic research application, of about 25 pages. More Info.

Webinars and events attended

NIHR INCLUDE Socioeconomic Disadvantage Framework

Jo and Louise attended the webinar that launched the NIHR INCLUDE Socioeconomic Disadvantage Framework on 24th January. The recording, slides and the framework itself are available here.

Public involvement in Research

Louise attended a small event from Bournemouth University PIER Partnership “Public Involvement in Research” on 24th January and made some useful internal connections. The session was a whistlestop tour of the main co-produced MSc CPD unit that Mel and the PIER team run regularly, more details here of the full course if this is something that interests you.

Upcoming events and webinars

• Running successful PPI Focus Groups (for Researchers), Cambridge BRC
  Tue, 21 March 2023, 13:30 – 15:30 More info.
  
  
• Open access training for patient experience
  An online course is now available via the NHS Leadership Academy's website, covering:
  
  - Who does what in patient experience evidence gathering.
  - Key concepts in patient experience work.
  - Why patient experience matters.
  - Challenges of hearing from patients.
  - How to find different types of patient experience evidence.
  - How to start making sense of patient experience evidence.
  
  To find the course, simply go to https://leadershipnhs.uk/, select your region and create an account (free), or log in if you are already a user of the Leadership Academy website.
  
  
• Imperial College London Patient Experience Research Centre - Public Involvement training
  Imperial offer an online course: ‘Public Involvement in Research’ and is aimed at researchers but also suitable for patients and the public. Over four weeks you will learn how patients and the public can be involved across the research cycle. More info.

Competition

Our PPI/EDI bulletin needs a new name. Please email any suggestions to Jo Welsman by 15th February. We will invite Gordon as director to pick the winner. Jo’s starter for 10…”Involve and Include” but I’m sure there are many more fabulous ideas out there!

If you would like to submit items or news for us to include in future bulletins, please send to Louise Ward or Jo Welsman