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15th July 2021

The July YORA network event was all about Patient and Public Involvement (PPI) in obesity research. In this blog, we reflect on some of the main takeaway messages from the discussion. It’s not an exhaustive record of everything – check out all the presentation slides and a recording of the event HERE. 

Patient and Public Involvement (PPI) is about involving members of the public in planning and carrying out research. It is rapidly becoming a vital component of healthcare research and YORA is committed to engaging with members of the public within the field of obesity. We’ve written a bit more about what PPI is and some examples of current work HERE

On the 14th July we were joined by just over twenty YORA members and had four expert speakers to talk about Patient and Public Involvement (PPI) in obesity research. The speakers were:

  • Lucie Nield from Sheffield Hallam University about the role of PPI in delivering weight management services
  • Sally Fowler-Davis (@SFowlerdavis) also from Sheffield Hallam University on the  development and activities of their Public Involvement in Research Group 
  • Jill Carlton (@JillCarlton1) from University of Sheffield (and NIHR Research Design Service) about patient and researcher perspectives on a project to develop a patient reported outcome measure (PROM)
  • Louis Palmer from Rotherham, Doncaster and South Humber NHS Foundation Trust on the Ethnic Minorities Research Inclusion hubs developed by the Yorkshire and Humber CRN.  

The first thing to say is: PPI can provide really valuable and often challenging input. We talked about some examples of PPI members absolutely slating research proposals and plans. It may be hard for researchers to hear but it is still good(!!) and part of the process. It’s these insights we want from PPI.

Secondly: There is a risk of PPI groups being quite homogenous. This is not surprising – a certain kind of person has the time and inclination to contribute to research in this way. However, we musn’t write everyone else off as too ‘hard to reach’ – there is no such thing!! It’s on researchers to understand the often complex barriers that prevent different people taking part in PPI and to put in place creative strategies to support and engage them. This video from Louis Palmer from RDaSH is a good example. It’s about the importance of healthcare research and was made specifically with engaging more people from Black, Asian and Ethnic Minority groups in mind.  

Thirdly: doing PPI well – particularly going beyond engaging the ‘usual suspects’ – is hard. While it can often seem like an add-on or another thing that needs to be done, we need to accept PPI as integral to the research process. Doing PPI requires additional time, planning, and money – things that are not always available. Although some funders may encourage (or even require) PPI, when the costs start adding up, it’s often an easy thing to cut. Dedicated funds for PPI, like this one from the NIHR Research Design Service for Yorkshire and Humber, are a positive step.

Finally: PPI needs to be part of an organisation-wide agenda. When organisational support is there, good practice can be shared and policies developed in one area, team or project can be used by others. 

Some things that researchers can do to support good PPI are:

  • Work around communities’ needs and preferences, don’t expect them to work around us.
  • ‘Close the loop’ – let people know what difference their contribution has made to research and keep them informed about research findings. 
  • Make all information accessible, including in an appropriate medium (e.g. videos, social media).
  • Reassure PPI members that we want their honest input and be prepared to deal with this.

 

1st July 2021

YORA is the Yorkshire Obesity Research Alliance. This blog sets out what YORA does, why we think working collaboratively with people and communities on research is a good thing, and how you can get involved.

YORA is a network for people from universities, Local Authorities, the NHS, businesses, VCS groups, and the public. We aim to facilitate effective regional action on obesity through collaboration and co-production. We do this through bringing people together, sharing learning and information about what’s happening across the region, identifying regional-specific issues, and developing new research ideas.

This is important because tackling obesity is a national priority and Yorkshire and the Humber has some of the highest prevalence of adult overweight and obesity in England.

There are currently over 150 YORA members from across the region, all with an interest in tackling obesity. We are really keen to increase this number – this means more voices in developing regional action on obesity. We are particularly interested in getting more members from VCS groups and people from (or representing) BAME communities as these groups have been underrepresented in the network so far. 

We want to increase VCS membership and involvement in YORA for two reasons. Firstly, so that we can tap into the local and experiential knowledge that VCS groups have around obesity. And secondly, so that we can involve communities more in doing research and in producing knowledge about them and issues that affect their lives. THIS short animation from PenARC highlights some of the benefits of involving people in research. 

Involving people is also the central theme of our next YORA event, which is about ‘patient and public involvement’ or PPI for short (more info HERE). PPI is a term that is generally used in health-related fields to cover a range of ways of including the voices of non-professionals in research and practice. So, for example, NHS trusts and GP surgeries have PPI groups that provide feedback on the quality of services. In research, PPI groups generally help shape what should be investigated but PPI can also extend to people being involved in actually doing research – collecting data, presenting findings, producing reports and other outputs. We’ve written a bit more about what PPI is and some examples of current work HERE

The NIHR Research Design Service for Yorkshire and Humber (RDSY&H) provides resources and advice to researchers on how to involve members of the public throughout their research. For more information about public involvement and how the RDSY&H can support you check out a pre-recorded introductory presentation. The presentation is split into two parts and the links are as follows: 

Part 1 – https://m.youtube.com/watch?v=yMT0YEtUnMU&feature=youtu.be

Part 2 – https://m.youtube.com/watch?v=i2k-ik4PIdk&feature=youtu.be

If anyone wants to request support from the RDS then they should complete this form and an adviser will get in touch: https://www.rds-yh.nihr.ac.uk/contact-us/request-advice/

Joining YORA is totally free. If you want to be involved in a research project, then your costs will be included in funding applications. 

More information about YORA, including who is involved and specifics about our activities is available on the website HERE.

The YORA PPI event is on Wednesday 14th July, 11:00-13:00. You can find out more and register to attend HERE

Please give us a follow – @YorkshireORA