Guidance for planning virtual public and patient involvement activities

Introduction

Following social distancing measures introduced by UK Governmental bodies in response to the Covid-19 pandemic the use of virtual platforms, for example Zoom and Microsoft Teams, to deliver patient and public involvement activities has increased.

In light of this trend, the Research Design Service North West (RDS NW) Patient and Public Involvement (PPI) team has developed the following guidance to assist those planning virtual platform-based PPI activities.

Costing your online PPI activity

Delivery of PPI activities through virtual platforms, mean that PPI participants will not have to travel to attend PPI meetings and so it is unlikely that travel expenses for PPI participants will have to be included in any tendered PPI activity.

However, the use of virtual platforms to conduct PPI activity may require additional materials being sent to participants to read ahead of participating in PPI meetings. Additional materials could be copies of project related materials, for example lay summaries or study recruitment strategies, and/or instructions on how to access and use the platforms being used to deliver the planned PPI activities.

Additionally, depending on the stake-holder group, those attending these virtual meetings and activities may still require the assistance of carers or support workers to participate.

When calculating the costs of these PPI activities due consideration should be given to the above factors in addition to any other cost estimations for PPI inclusion in planned research projects.

Public contributors should be adequately compensated for their time and input. For advice on estimating PPI activity costs, such as thank you payments for public contributors’ time, both to participate in the activity and to prepare by reading materials, we advise the use of the guidance provided by INVOLVE.

Organising your on-line Patient and Public involvement activity

When planning virtual PPI activities, the following should be considered:

  • screen fatigue and activity length – the need for screen breaks should be considered when developing virtual PPI activities, for example, a two-hour online meeting may benefit from a 15 minute screen break half way through
  • sending of thank you payment – given the lack of face-to-face contact, payment will need to be organised electronically, for example, sending of fees forms, bank details and some public contributors may need help with this
  • note taking – to help facilitate virtual PPI activities an additional note taker could be included in the activity to take notes allowing the main facilitator to concentrate on managing the PPI activity

Recording virtual PPI activity

Some virtual platforms, for example Zoom and Microsoft Teams, allow for the recording of meetings. However, the use of such functions and of digital recording devices to record PPI activities should follow a robust consent process and strict researcher compliance with any organisational General Data Protection Regulation (GDPR) policy.

Data protection considerations

In order to ensure compliance GDPR, ensure:

  • the client is aware of the organisation’s privacy policy and the PPI activity is being carried out under one of the legal basis and it can be justified that this legal basis can be applied
  • the public contributor is informed of the privacy policy, retention period, how the information is to be used and who will have access
  • the client is aware of how managing and deletion is governed by their organisation policy

Good practice suggestions

For good practice:

  • attendees are to be notified of the recording by the chair or lead presenter of the meeting, before the recording is turned on
  • any objections to the recording should be considered by the chair or lead presenter, and they should ultimately decide what is appropriate in light of any objection
  • any late comers to the meeting should be alerted to the recording, by the chair or lead presenter, at the earliest opportunity
  • the recording should cease at the formal close of the meeting
  • covert recording is not be allowed and could be viewed as a disciplinary offence by the client’s employing institution
  • other software can be used to record meetings but all of the above guidance still applies to such recordings

Disclaimer

These are guidelines and people should follow their organisation’s guidelines on GDPR.  Please see the RDS terms and conditions, when using any advice provided by the RDS NW.

RDS NW virtual PPI guidelines – 2020-10-22 – version 1.0

Download a PDF version of the guidance for planning virtual public and patient involvement activities.