Adapting Patient and Public Involvement processes in response to the Covid‐19 pandemic

Abstract Background The COVID‐19 pandemic brought rapid and major changes to research, and those wishing to carry out Patient and Public Involvement (PPI) activities faced challenges, such as restrictions on movement and contact, illness, bereavement and risks to potential participants. Some researchers moved PPI to online settings during this time but remote consultations raise, as well as address, a number of challenges. It is important to learn from PPI undertaken in this period as face‐to‐face consultation may no longer be the dominant method for PPI. Methods UK stay‐at‐home measures announced in March 2020 necessitated immediate revisions to the intended face‐to‐face methods of PPI consultation for the ESORT Study, which evaluated emergency surgery for patients with common acute conditions. PPI plans and methods were modified to all components being online. We describe and reflect on: initial plans and adaptation; recruitment; training and preparation; implementation, contextualisation and interpretation. Through first‐hand accounts we show how the PPI processes were developed, experienced and viewed by different partners in the process. Discussion and Conclusions While concerns have been expressed about the possible limiting effects of forgoing face‐to‐face contact with PPI partners, we found important benefits from the altered dynamic of the online PPI environment. There were increased opportunities for participation which might encourage the involvement of a broader demographic, and unexpected benefits in that the online platform seemed to have a ‘democratising’ effect on the meetings, to the benefit of the PPI processes and outcomes. Other studies may however find that their particular research context raises particular challenges for the use of online methods, especially in relation to representation and inclusion, as new barriers to participation may be raised. It is important that methodological challenges are addressed, and researchers provide detailed examples of novel methods for discussion and empirical study. Patient and Public Contribution We report a process which involved people with lived experience of emergency conditions and members of the public. A patient member was involved in the design and implementation, and two patients with lived experience contributed to the manuscript.

Patient and Public Contribution: We report a process which involved people with lived experience of emergency conditions and members of the public. A patient member was involved in the design and implementation, and two patients with lived experience contributed to the manuscript.  4 This has potential implications for research quality, fairness and representation. 5 PPI empowers people by representing their views within research and is considered a form of social justice. 6 Following changes within society and in applied research since the COVID-19 pandemic, face-to-face consultation may no longer be considered the most appropriate approach to PPI.

| PPI in a changing context
There is a small and varied evidence base showing changes to PPI processes made during the COVID-19 pandemic. Some teams created new partnerships. Jamal and colleagues report how a rapidly assembled PPI panel changed the design of a COVID-19 trial for patients with cardiovascular disease, high blood pressure and diabetes. 7 After a one hour online meeting with patients living with these co-morbidities, the team made alterations to address concerns over the planned withdrawal of prescribed medication. Other teams worked with existing relationships. Adeyemi and colleagues 8 were conducting PPI with marginalised groups with vulnerabilities; they developed strategies should partners become distressed or unwell during online meetings, and, for familiarity, mirrored methods used in previous faceto-face meetings. Leese and colleagues emphasised the importance of sustaining 'social connections and trust that had been built over time'. 6 Online group dynamics can be complex. Lampa and colleagues 5 explored a shift online by observing PPI meetings with people with experience of seeking refuge, and those facing economic hardship. They saw the online meetings as more structured and facilitators more directive than in their previous observations of face-to-face meetings.
With fewer spontaneous interactions and nonverbal cues, increased linguistic barriers and difficulties in claiming space to speak, they conclude that online PPI is possible but requires adaptations to 'solve practical issues'. For PPI with groups of adults with visual impairment Adeyemi and colleagues 8 invested time developing context-appropriate online methods, including very small groups, planned turn-taking for speaking, avoiding visual cues, and using spoken summaries. Rasburn and colleagues 9 found that PPI participants reported a 'sense of comfort' and 'a reduced feeling that involvement is daunting' which they felt related to control over the online environment, for example, volume control, full-screen views of speakers.
This paper aims to describe how PPI processes were modified during the pandemic, within the context of an evaluation of emergency surgery for common acute conditions. We focus on initial PPI plans and adaptation; recruitment; training and preparation; implementation, contextualisation and interpretation. Through firsthand accounts we show how the processes were developed, experienced and viewed by different partners. We then reflect on central themes that emerged in the context of related literature.

| The Emergency Surgery OR noT (ESORT) Studies-Initial PPI plans and adaption
The ESORT Studies consider the cost-effectiveness of emergency surgery for patients admitted to NHS hospitals with common acute conditions (appendicitis, gallstone disease, diverticular disease, small bowel obstruction, abdominal hernia). 10 3. a choice of meeting times was offered (afternoon or evening); 4. asynchronous self-managed training was developed.
These adaptations were carried over to ESORT-C19. To differentiate the planned (A and B) and adapted meetings, we refer to the latter as meetings 1, 2 and 3 ( Figure 1).

| Recruitment to the panels
Panellists were recruited in May 2020 via multiple routes. Moving the meetings online meant that ESORT Study clinicians were able to share recruitment invitations with their local patient groups regardless of proximity to London. Members of the public were recruited via the NIHR Applied Research Collaboration network, and contacts of the study's Patient Members.
Fourteen panellists joined the initial meetings held in July 2020.
There were two further meetings in September 2021 and two in May 2022. One member left the panel. Another who was unable to make earlier dates joined the final meeting.

| Recruitment of PPI panellists into the authorship group
Two panellists were later invited to be co-authors of this paper.

| Training and preparation
Before the first meetings, panellists were sent bespoke training materials via an online link, and a publicly available document explaining Zoom and online meeting etiquette. The team felt that clear and engaging information was essential to support the discussion. The training materials were created using Microsoft Sway which can create a visually appealing and information-rich online document with text, images, videos and embedded links to resources such as websites or publications.
The content was co-produced by the PPI lead, the Patient Member who produced a video, the clinicians and academics. The text covered key topics and was written in plain English and to promote familiarity, images of the ESORT team member who would present and lead discussions on each topic were included. Powerpoint was used to create meeting slides.
Sway and Powerpoint include accessibility checkers which prompt users to describe images with alternative text and embed hyperlinks into the meaningful text to support anyone using a screen reader and to limit repetition. Panellists were advised that accessible versions could be viewed, exported and printed (support was offered), or the ESORT team could post copies. Before meeting 1, a panellist indicated that support would be helpful. They wished to work through the materials independently but met online with C. S. to go over the slides with their screen reader to process information and tasks and consider responses in advance. Later, it became clear that another panellist might have benefited from similar support. Support was offered to both panellists for meeting 2 but was not needed.
Training materials were tailored to each meeting.
Meeting 1 materials (July 2020) 13  3. hyperlinked to meeting 1 materials to refresh knowledge of the conditions and patient stories; 4. presented questions to be discussed in the meeting.
The materials were intended to convey information and deepen learning, to prepare the panel for meeting tasks and discussion. They could be worked through at an individual pace. Embedded extras could be explored or skipped. Earlier materials could be revisited.
They met different learning styles, as per the VARK model 16 : Visual learners prefer to learn by seeing and observing, and charts, graphs and figures were included; Auditory learners learn by listening and videos were used to consolidate and extend other material; textsupported Reading learners and for Kinesthetic learners who learn best with a task, information cards were clicked to reveal hidden content. A house style was maintained in the materials and slides for continuity and to foster familiarity over time.

| Implementation
The meetings were carried out on Zoom, which offers functionality well-suited to our needs. Participant images and names are displayed if they choose. Reaction tools allow hand-raising to request to speak or to support or disagree with a point. Images move to the top of the display when someone speaks or reacts allowing chairs to be responsive.
The meetings opened early for virtual coffee, paralleling opportunities for an informal chat before face-to-face meetings.
The screen showed an image of a coffee cup. Meetings included introductions, presentations, questions and tasks for discussion. A screen break mid-way closed opportunities for further informal contact but seemed important in a session exceeding two hours.

| DISCUSSION
This paper describes how plans and methods for PPI were modified during the pandemic. It considers this as an issue of general and ongoing importance for applied health research and does so within the context of studies evaluating emergency surgery for patients with common acute conditions. This context was specific but epitomises likely common complex challenges for PPI in an online environment.
We draw from first-hand accounts of patients, clinicians and nonclinicians to consider our processes from different perspectives.
Here, we reflect on connections between our processes and two central concerns emerging in recent literature: representation and inclusion, and altered dynamics online. It is important to consider the demands of the PPI sessions themselves, whether the online format might encourage or discourage participation, and shape the contributions that participants can make. Engler and colleagues 21 asked participants to record views on a virtual whiteboard and reported that for their participants this 'facilitated a feeling of participation and co-production', but for people with, for instance, visual impairments, low literacy or dyslexia, such aspects of online participation may be discomforting. Consultation methods need to be anchored to their context and should create a satisfying experience for participants. Two ESORT Study panellists had visual impairments but only one self-identified and received our support. We did not consider making available a translator, signer or information in a dedicated format such as Braille or an Easy Read document. We should have been proactive in offering support to prepare and participate in the meetings and reduce the risk of biases and exclusion.

| Representation and inclusion
A major challenge within our PPI sessions was to facilitate discussion of unfamiliar topics including the use of routine health data and related outcome measures. We found that providing materials designed to engage, to meet different learning styles, and with embedded accessibility functions, helped the panel tackle complicated subjects. The materials were central to our approach but undoubtedly demanded time and effort from the panellists. It is likely that they would be challenging for those uncomfortable with reading, or those who are unfamiliar with digital documents.
Online approaches may exacerbate health and social inequalities known to already affect representation in PPI. 5 Examples of potential risk factors for exclusion include language barriers, 19 and cognitive ability for people with conditions such as dementia. 20 Online PPI's dependence on material goods and skills creates particular concerns that digital poverty and low digital literacy, themselves markers of inequalities, will drive further exclusion, 8,19 marginalisation 22,23 and disenfranchisement. 24 In response, PPI partners have been provided with equipment and funds to purchase data to facilitate involvement 21 and offered digital skills training. 9 Hybrid approaches might allow different participation modes. 20 The digital divide is however a significant threat to the validity of online PPI and methodological research is needed to address the challenges involved.

| Altered dynamics
Evidence of the impact of the altered dynamics of the online environment is mixed, with benefits for some 9 and limitations for others. 5 We found what one panellist referred to as a 'democratising' effect. Instead of a meeting room with a chairperson and audience, with speakers presenting slides from positions of authority, all participants in our meetings appeared onscreen equally in random order. Most joined from home. There were no suits or formal clothes.
Everyone was listed by the first name without titles. All took turns to speak, emphasised by hand raising. There was space for panellists to ask the ESORT team questions and vice versa. Others have similarly observed a reduction in 'power asymmetries between "experts" and the "public"' 19 and disruption of 'the hierarchy of speakers and disproportionately dominant contributors'. 9 Some of this relates to platform functionality, in particular, handraising and turn-taking for all, 9 and the ability to use chat functions to comment. Jones and colleagues 19 argue that these features gave participants 'confidence that their contribution will be acknowledged in an appropriate manner'. There is some dissent, however: difficulties in reading body language and picking up prompts 5 have been cited as challenges to the discussion, and one study found that where the turn-taking was not observed, this was experienced negatively. 19 One potential challenge is that the online format may raise new obstacles to interaction given reduced opportunities for informal encounters that can support group formation. We aimed to address this with virtual coffee and smaller groups; others have gone further towards building 'personal relationships' through telephone contact, technical support and setting up the atmosphere of a break by sending drinks and snacks to participants' homes for use on the day. 21 PPI processes and the online environment should be safe and comfortable for all. Some topics will invite participation by those with significant health needs or vulnerabilities and/or their carers.
Participants have indicated a preference for meeting environments in which they are not required to maintain a constant visible presence. 24 This offers control over what is and is not shared.
Cameras and microphones can be discreetly turned off to deal with distress, discomfort, pain, equipment or to give or receive carer support. Parents may step away as needed when joining from home. This ability to self-manage is especially important in sensitive situations, as addressing emotional needs in online settings is a possible challenge 25 ; it may be difficult to see someone struggling emotionally and to reach out and offer support. This does not though remove the responsibility to respond to distress triggered by PPI discussions. Breakout rooms could be offered to allow participants to talk to a designated support person. Meeting set-up materials might walk participants through these options. These actions do however require proficiency in online environments.
The facilitator can influence the quality of proceedings and discussion 20 by being welcoming, observant and responsive. They may be an active presence or may miss hands raised or important comments in chat boxes. Multiple facilitators per meeting have been recommended, and facilitator training is proposed as essential to the quality of online PPI. 19 We suggest that developing and attending such training would mark a commitment to making the altered dynamic of the online PPI environment a safe and effective space.

| CONCLUSIONS
PPI is evolving and new online approaches may help avoid some of the biases within traditional PPI. 26 Chew-Graham argues that 'we need to continue to do things differently'. 27 For the ESORT Studies, an online approach encouraged participation by some who would otherwise have been excluded. It generated broad discussion and helped refine research outputs. There may be important methodological challenges in studies where topics are sensitive, or PPI partners are marginalised or vulnerable.
While our experience of developing online PPI methods raises some conceptual and practical issues likely to be of wider relevance, it must be recognised that the methodological choices for other studies will be context-dependent. Research teams will need to consider the interplay of research questions, the PPI population, and online proficiency, to navigate their particular challenges. While we cannot speak for every panellist, as there may have been needs and dissatisfaction not shared with the team, we felt that, for these studies, in this context, with these methods and participants, online meetings facilitated and supported collaboration and contributions.
Online PPI is not simply a matter of moving people and materials to a different setting. For complex topics, there is a disconcerting trade-off between developing methods to promote engagement, and placing additional demands that may act as a barrier to participation.
It is important that wider methodological challenges are addressed, and researchers continue to provide detailed examples of novel and inclusive methods for discussion and empirical study.