Remote working in patient public involvement in health and social care research - responding to Covid-19 and rising health inequalities

Lead Research Organisation: University of Liverpool
Department Name: Public Health Policy & Systems

Abstract

This study has been prompted by the shift to non-face-to-face - remote - forms of working in patient public involvement and engagement (PPIE) brought on by Covid-19 prevention measures (such as social distancing). Working remotely includes using digital technologies such as: online conferencing software (Zoom, Microsoft Teams), emails, telephone calls and social media (WhatsApp, Facebook). Due to measures such as shielding and social distancing the usual ways of involving the public in research that included face-to-face meetings and events are not possible, and even with the eventual easing of lockdown, remote working is likely to continue. This creates particular challenges for ensuring access and engagement from all parts of society in health and social care research. There is a well-documented digital divide between those who use or have access to digital technologies and those who do not. This digital divide reflects the existing socio-economic inequalities, and PPIE that takes place remotely has the potential to further exclude already disadvantaged groups.

This project aims to facilitate and improve ways of doing PPIE remotely and increase the diversity of public contributors involved in health and social care research.
Our objectives are to:
1. Understand the barriers and facilitators to remote working, by:
a. Exploring public contributors and PPIE professionals' experiences of remote PPIE.
b. Exploring public contributors' preferences for different types of remote working.
2. Develop mechanisms for implementing improvements in remote working and ways to increase diversity in PPIE by:
a. Conducting a rapid review of research and 'how to guides'.
b. Develop training packages.

We will recruit public contributors involved in research projects across the UK: the NIHR, charities, universities and other research organisations and people involved professionally with PPIE. This is a mixed-methods study with: surveys, qualitative interviews, and a discrete choice experiment. We will produce an analysis of how remote working in PPIE is affected by socio-economic and health inequalities, make recommendations for improving practice and develop training packages.
 
Description Our project focused on the shift to remote forms of working in patient public involvement and engagement (PPIE) brought on by Covid-19 prevention measures. It was a mixed methods study that combined online surveys, with public contributors and professionals who organised and facilitated public involvement, interviews with public contributors and a discrete choice experiment (conducted via an online survey) and focus groups.

We found that certain areas were consistently raised during the interviews with pubic contributors and in our survey data. These included: the role of the meeting chair or moderator and uncertainty about whether their contributions had been taken on-board. The interviews also identified three key stages that influenced how PPIE contributors felt about participating in meetings: what happens before, during and after the meetings.

Key pre-meeting elements were: features that would let participants know when and how to connect to the meetings; whether the project would provide any necessary connectivity tools that might help increase participation; choice of meeting length and timing; whether devices and/or internet/electricity costs and the type of technical support to connect to meetings were provided. Aspects related to what happens during the meetings and how these are run, such as the role of the moderator, differentiating between an adequate and a good moderator, and meeting etiquette (e.g. whether the public contributor has to keep their camera on at all times and be ready to participate). Finally, and while not being an aspect exclusive to remote meetings but because of the importance it had during the preliminary qualitative research whether the participant received any feedback after the meeting.

The key areas of new knowledge that have been generated from our project included: remote work opportunities have provided public contributors with a sense of purpose which has a strong link with their mental health and well-being. However, remote working has increased many public contributors' workload and come with some challenges such as steep technological learning curves. There are both benefits and disbenefits to working remotely in PPIE, and some found that being able to access meetings in their own home, enabled them to be more involved than they had previously. However, remote working did exclude others - an area we were not able to fully explore. We found that the public contributor's experiences of remote meetings varied depending on how the meeting was organised, facilitated and what follow-up was done.

We have found that public contributors and professionals would still be interested in doing PPIE remotely after government restrictions, social distancing measures have been removed, or at least wanting to have a balance between remote working and face-to-face contact.
The analysis of our project data is still ongoing and we are finalising our outputs: two publications and designing remote working policies and support materials.
Exploitation Route Our findings and subsequent training materials will be of use primarily to those conducting patient public involvement and engagement (PPIE) in a health and social care setting. Our findings will give detailed and research-based suggestions for how to best organise remote online meetings and how to ensure that everyone gets the most out of these meetings and that the public contributors feel valued and that their opinions and contributions are meaningful. Some of these good practice suggestions will be of use to all forms of PPIE meetings, including face-to-face meetings, and they will also, potentially be useful to all types of meeting - not just those in PPIE.
While health and social care research has been the area we have focused on, remote public involvement and engagement takes place across a number of sectors, so our work will be useful across both the public and private sector, and for those seeking to bring a wider diversity of views to their operations.
Sectors Digital/Communication/Information Technologies (including Software),Education,Healthcare,Government, Democracy and Justice
 
Description The work with our partners the NW Coast ARC and the RDS has had impact. We have contributed to training both applied health and clinical researchers on how to approach remote working in public involvement. We have also contributed to providing information for both public contributors and the staff who organise and coordinate public involvement. We have provided advice on how to organize public involvement during the Covid pandemic and this has strengthened the abilities of public contributors to remain actively involved in activities related to designing and carrying out research. We have now produced our guidelines and they are hosted on the NW Coast ARC website, there are a short info graphic that summarises the main findings and key recommendations from this project. https://arc-nwc.nihr.ac.uk/get-involved/opportunities/remoteworking/
First Year Of Impact 2022
Sector Digital/Communication/Information Technologies (including Software),Healthcare
Impact Types Societal,Policy & public services
 
Description RDS 
Organisation Research Design Services North West
Country United Kingdom 
Sector Public 
PI Contribution We organised training on remote working in public involvement for the team.
Collaborator Contribution Joint working on public involvement strategies.
Impact N/A
Start Year 2020
 
Description NIHR Applied Research Collaboration North West Coast 'ARC Fest's' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact The NW Coast ARC holds quarterly meetings called 'ARC Fests' that bring together all of the ARC partners and collaborators, that includes hospital trusts, local authorities, public health practitioners, CCGs, general practitioners, patient organisations and applied healthcare researchers - currently over 100 collaborating partners, involved in health and social care across the north west.
Typically, over 200 people attend, including a number of public contributors.
We have presented at these Fests, and worked with the public contributors at these events for the past two years, presenting to the Public Contributors' Forum.
Year(s) Of Engagement Activity 2020,2021
URL https://arc-nwc.nihr.ac.uk/events/arcfestdates/
 
Description NIHR ARC National virtual workshop hosted by ARC East of England 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact This workshop will be held via zoom and a link will be shared after registration.
Date: 2nd March
Time: 14:00 - 17:00
COVID-19 has presented challenges for us all and social distancing has fundamentally changed the way many of us work.

We have had to do things differently including how we build relationships and partnerships between applied health researchers and members of the public to ensure research is inclusive.

This workshop aims to capture and share the innovative and creative ways that together researchers and public partners have created and maintained communication and trust in the context of COVID-19. We hope that sharing such innovations will help to ensure that new ways of working in partnership will be carried forward and make a difference in the post-COVID world.
The workshop will be facilitated by 'Shaping Our Lives' a user-led organization.
Sharing ideas on 'making it different' will be facilitated by group work and discussion as well as a series of short presentations (5 minutes maximum).

We presented on
Staying connected- Remote working and Patient Public Involvement and Engagement (PPIE) in health and social care research
Shaima M Hassan, Lucy Frith, Mohammad Hossain and Mark Goodall
This project has been prompted by the necessary changes in our PPIE working practices due to the Covid-19 pandemic. However, once the social distancing measures have passed there is still merit in exploring how we can use communication technologies to facilitate remote PPIE working more effectively to include and engage a wider range of people in our work. We aim to present the learning captured through online surveys and in-depth interviews, on how we can facilitate and improve doing PPIE remotely, working with people without face-to-face contact, in health and social care research.
Year(s) Of Engagement Activity 2021
URL https://arc-eoe.nihr.ac.uk/events/inclusive-research-post-covid-19-making-it-different