COVID-19
Supporting public involvement during the COVID-19 pandemic
Steven Blackburn, NIHR Research Design Service
Shared commitment
The National Institute for Health Research have published a set of shared commitments for public involvement, participation and engagement during the COVID-19 pandemic.
Despite the difficult times we face currently with the uncertainty of the crisis and the impact of social distancing, PILAR members and other research organisations in the West Midlands continue to support public involvement in research. Research will continue during lock down - some focused on important COVID-19 issues; some on other health conditions. Public involvement remains a central part of these studies.
Organisations are using different ways to engage and involve public contributors remotely. Though challenging, it can be done if planned and supported well. Here are some tips to support remote public involvement (produced by the Research Design Service South Central).
Identifying PPI representatives:
Utilise online sources or known contacts to identify patient and public involvement (PPI representatives). You may wish to contact a charity or support group via phone or email and request they disseminate some information regarding your project to their contacts. You might also look into online forums or try People in Research (peopleinresearch.org). It is possible that charities will be particularly busy at this time, which may slow down response time.
How to ‘meet’
Meeting face to face will not be possible because of COVID-19, however there are other means of contacting people. Please consider what is most appropriate for the individual/s you are working with (and ask them their preference). One to one phone calls may work best for those with limited access to the internet, or for more in depth discussions. Teleconferences could also be an option, if a group discussion would be helpful but internet access is a challenge. Most universities/trusts have free use of BT’s conferencing for the public sector – please enquire with your local administrator if you have access to this service. Alternatively you might consider one of the many video conferencing options available, such as Zoom, Skype, hangout and Gotomeeting.
Facilitating a video conference PPI session
Skype/Zoom etc are not a replacement for face to face and need strong chairing. Establish clear ground rules from the offset, and ensure you provide opportunities for everyone to speak. Small points like “please keep your microphone muted if you’re not speaking” helps sound quality, and keeping participant numbers manageable will ensure all contributors are able to contribute fully. If not everyone has access to a video, it may be helpful for contributors to say who they are before they speak. For more guidance on chairing a videoconference please see this document produced by SPCR WM
Consider other ways of communicating
Using social media or WhatsApp may be another way for a PPI group to stay in touch and engaged. Having a space for sharing info, resources, thoughts and friendly chat (as well as a space for more formal feedback) will help promote the supportive and friendly aspects of PPI, which otherwise may be lost with a lack of face to face meetings.
Payment
Check with your finance department before undertaking any PPI work that your representatives will still be able to be paid (in the absence of being able to sign claims forms), and whether any alternative process needs to be followed. If payment is not possible, consider alternative methods such as online vouchers
Be mindful of people’s wider responsibilities
Your PPI representatives may well have additional responsibilities during these times, including caring for children or vulnerable adults, or shopping for neighbours. Try to give people plenty of time and reasonable timelines (except in exceptional circumstances for example COVID-19 related projects). Allow flexibility in your timelines to accommodate people’s changing circumstances, caring responsibilities or illness. For COVID-19 related projects, consider whether your PPI representative is able to work with you on tight timescales. Discuss this with them and ensure they fully understand any commitment and have adequate capacity.
Co-design and co-production
This may be an additional challenge during these times, as this close working relationship may be harder to sustain virtually and with competing priorities. Discuss this with your PPI partner, and consider measures you are taking with other colleagues to continue working effectively. Adapting your working methods will be important, as will planning and ensuring effective communication. New resources and guidance is emerging and people are sharing ideas and resources constantly. If you are hoping to carry out co-production or co-design, then we recommend speaking with your RDS PPI advisor who can share with you the latest information.