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Despite not being able to meet in person, the Open Arms PPI group held a virtual away day, sharing ideas for its future development.

The Open Arms away day

As someone who is fairly new to PPI, attending the Open Arms away day was an interesting and useful exercise. My role in the group is through my work as a communications officer at NDORMS and myself and the comms team helped launch the group in March 2021.

As a newcomer to it all, I have found the terminology can be confusing. Terms like involvement, engagement, and participation are used in different contexts. But the away day opened with Rachel Taylor from the Oxford BRC (the Biomedical Research Centre that funds research collaborations between universities and the NHS) not only explaining how the BRC is structured in Oxford, but crucially, giving a simple explanation of terms used.

  • Involvement: is where patients or the public get involved in planning, designing, communicating about research, perhaps as a patient with 'lived experience'.
  • Engagement – tends to happen later when research is completed e.g. public talks about science.
  • Participation – which is taking part in a trial that has been fully planned and received approval from an ethics committee, and for which you need to explicitly give informed consent.

Open Arms stands for the 'Oxford Patient Engagement Network for Arthritis and Musculoskeletal Conditions'. The group is led by Dr Laura Coates and made up of patients, researchers, and clinicians with a goal to improve research around conditions affecting the bones and joints. A patient's experience of living with a disease, or caring for someone with a condition, can provide that extra level of insight that will help steer research to improve care or treatment.

The away day was intended to take place in person, with the committee and patient partners being able to meet for the first time since the launch of Open Arms during lockdown. Unfortunately, it wasn't to be, and so the group met virtually via Zoom. But the patient partners were sent biscuits to enjoy with their tea during the break!

The goal of the meeting was to discuss ideas around two key areas:
- Training for PPI members.
- The future of the Open Arms group

Attendees were split out into breakout rooms where thoughts were openly discussion and blue-sky thinking was actively encouraged. This led to a series of ideas and action points which I've summarised here.

Training for PPI members

Some of the common issues and ideas discussed centred on the fact that the Open Arms group had not yet been able to meet in person and build those connections as patients and researchers. A coffee and a face-to-face chat can go a long way in helping people get to know more about others in the group, or just being able to ask a question. Expectations and experience can differ from both the participant and researchers' perspective, so ideas included:

  • Create an induction pack and video.
  • Explain how the PPI group sits within the BRC.
  • Avoid making assumptions that participants are familiar with how meetings are run, hybrid meetings or even calendar management.
  • Start each meeting with a slide to introduce the purpose and expected outcomes.
  • Introduce a buddy system with more experienced members supporting new participants.
  • Train researchers on how to get the best out of their PPI group – to encourage interaction, shift the power balance, and ensure participants feel comfortable.
  • Keep interest up with stimulating talks and events.

The future of Open Arms

Ideas for moving forward with Open Arms also included lots of ideas around communications, meeting in person and building interest with a broader audience across Oxfordshire. Thoughts included:

  • Include PPI input at all stages of research but particularly later in the process in terms of sharing results.
  • Ensure a sense community within the group so that participants don't feel they are missing out on things taking place between official PPI meetings.
  • Hold PPI only meetings – to enable participants to be a bit more open, to bond, collect feedback and discuss thoughts.
  • Expand public interest in the group with community engagement activities such as talks to U3A, WI, stalls at events or shopping centres.
  • Offer tours of the labs at NDORMS to demystify research.
  • Take a lead from programmes like Horrible Histories that explain things in a very simple way.
  • Take part in Podcasts, chatting to patients and clinicians about involvement in research.
  • Engaging with international days such as International Nurses Day, and National Patient Participation Week.

There was plenty of food for thought for the Open Arms committee who are looking forward to an in-person meeting soon to start taking action on these ideas.