Blogs 17.07.2020

Using Zoom: Views from Patient and Public Involvement Contributors

This blog is about our Public Involvement in Research group (PIRg) based at the University of Hertfordshire and its first use of Zoom for meetings. Overall, as members of the PIRg we feel positive about Zoom which has advantages of being good for those of us with health conditions who otherwise might not be able to join a face to face meeting, offers flexibility, reduced travelling and the benefits of being in the comfort of one’s own home. However, we also recognise that in virtual meetings you miss out on social contact, some of us will need technical support and Zoom may also make some people anxious. As public members we do not have access to the same technical support on our own computers as members of University staff. The issues of phone calls and internet costs was also raised.

The Public Involvement in Research Group formed in 2005 and meets face to face five times a year in a University building. We usually start around 11am and have a break for lunch and then continue until 2pm.  We provide updates on the studies we have been involved in, researchers come and discuss their studies and feedback is given (to us) on changes researchers have made due to our input.

We were due to have a meeting on 30 April and the pandemic meant that all staff were told to work from home and cancel any face to face meetings.  The chair and administrator assumed (incorrectly) that PIRg members would not want to hold the meeting online, such as by Zoom. However, one PIRg member persuaded the chair and facilitator that it would be good to go ahead with the already scheduled date and try to hold the meeting by Zoom. We shortened the meeting and started it earlier, so it ran for two hours instead of usual three and it was scheduled to start at 10:30am. The helpful guidance by National Coordinating Centre for Public Engagement (NCCPE) was used and people were offered the opportunity to have a “Zoom” practice beforehand with the administrator and two members took up the offer.  One member who was unable to join fully by zoom due to audio and visual difficulties on her computer (she could see and hear us but we couldn’t see and hear her) joined the meeting by phone on loud speaker. The administrator facilitated her joining and kept her informed throughout, including the administrator raising her hand to obtain the Chair’s attention when the member wanted to speak or ask a question.  There was a total of 11 PIRg members (out of a possible 13) at the first meeting and two had not used Zoom before.  The majority had video cameras on, although one member chose not due to unstable internet connections.

Elspeth Mathie (from the Inclusive Involvement in Research theme, Applied Research Collaboration, East of England) suggested we share our experience;

Diane Munday: For around 15 years I have brought to University of Hertfordshire Patient and Public Involvement (PPI) group, and more recently to its Service User and Public Involvement (SUPI) committee, knowledge about diabetes and long-term experience of caring for relatives with dementia and strokes. This has led to running/working within organisations supporting people with these afflictions and enabled me to work in a variety of roles (e.g evaluator of bids, membership of management committees, co-researcher, lecturer and presenter).

Now in my ninetieth year and as a diabetic for the past fifty years I have been self-isolating although my youngest son and eldest grandson, who both live with me, have continued working during the pandemic; grandson from home and son at his usual place of work. Although, as three generations in the same household we usually rub along together well enough, some problems have been magnified and others created   -   e.g. getting on each other’s nerves; keeping the premises clean and (hopefully) virus free.

I seem to be doing around the same amount of PPI work as previously but it is becoming increasingly difficult to motivate myself to get down to it  and takes much longer to complete ; my brain has turned to mush, I am becoming lazy  and  have no sense of time passing despite not going off the premises and overall doing much less!

I take part in a number of Zoom meetings  linked to different organisations and actually now find it much easier than  driving to and  attending meetings,, The technology works well  except when grandson and I  both have Zoom meetings in progress at the same time – our computers send  messages about the line becoming unstable but so far have continued functioning.

Overall I find some practical advantages of working this way (e.g no need for travelling and lipstick) but other “social” disadvantages (eg lack of contact and socialising with “outside” people). I have found that the Zoom meetings (the PIRg and SUPI) arranged by the University  have worked very well (in no small part due to the meticulous preparation and organisational work of Julia (Chair) and Sonya (Administrator).

Wendy Ball, Wendy Ball, an Expert by Experience with PIRg since 2018. I live with my parents who are in their 70s and we have lived in accordance with Government guidelines for COVID.  

My PPI experience has increased over the past 3 months as I had more time during lockdown and was very keen to be involved especially in any research which involved learning from our COVID experiences. 

This has been done mainly via email contributions and participation in research by phone.  I really enjoy face to face meetings generally and also struggled a little at the beginning getting used to video conference technology, mainly anxiety and problems with the internet connection, but once it had all settled down, found that I really enjoyed it. I found the two PIRg meetings to be very well organized and professionally run just like the face to face meetings. 

Zoom enabled me to continue to be involved during lockdown and I actually prefer it now especially as it saves me approx 4 hours travelling on 6 buses to attend meetings. It used to be very stressful waiting at bus stops with all the problems of public transport and quite tiring.  Now I can participate from home and would like this to continue as it enables me to spend more time on other projects instead of travelling and helps me to manage my mental health conditions much better. 

I think the use of email, phone and Zoom are all excellent ways of including more people in research, particularly those with disabilities, health conditions or caring responsibilities.   It gives greater flexibility, eliminating the time involved in travel, the stress of car parking and enables people to manage their environment to suit their health conditions or preferences, e.g. comfortable chair, adjusting devices for the hard of hearing, visual impairment etc. 

Kate Gray:   I work in patient service assessment, I’ve been a Crohn’s patient for 17 years, and I joined the PIRg last year after starting to work with the School of Health and Social Work at Hertfordshire University.

Because of the medication I take, I have been shielding since April, working from home alongside my husband. 

I actually feel like the Patient and Public Involvement (PPI) work has been pretty consistent under the circumstances - I’ve found researchers and facilitators were quick to find solutions and zoom/phone meetings have worked well. I don’t feel like anything has been lost working in this way - I’ve still been able to contribute in the same ways I would have in face to face meetings and interviews.

I think working remotely gives more scope to be flexible - it’s been especially helpful recently when I’ve been having a flare up of symptoms and otherwise might not have been well enough to attend a face to face PIRg meeting. 

I think if people can be supported to be confident using new ways of meeting, there’s potential to be even more inclusive - particularly for those who have frequent periods of poor health or mobility. 

Marion Cowe:  I have been a PIRg member since the beginning and hope to bring the group my past experience as long term caring for people living with dementia, knowledge of voluntary sector and health services.  

During the pandemic I have started using my laptop to continue my exercise class and join Church services. I accessed lecturers on my laptop e.g. museums, theatre productions (via You Tube) but it would have been helpful to have Zoom. Unfortunately, I although I could join a Zoom meeting, I could not be heard and people could not see me. It was to do with my microphone and camera settings on my laptop and I was unable to solve the problem. I joined the PIRg meeting and could see and hear everyone on the screen, but was unable to join in.  As a solution, we agreed that I would ring the PIRg administrator who facilitated my joining in, and my phone call could be heard.  It was not ideal and I could not join in “chit-chat” but it worked ok.  Cost is not a problem, but I am aware that other members of the public will be restricted due to phone costs and internet costs. I would suggest groups also use conference calling facilities, we used to use previously on research projects.

A fellow member of the PIRg (technically computer competent) offered to help by phone but we were unable to resolve the issue. It seemed they needed to work on the laptop, however, due to COVID-19, people were unable to come inside the house. A colleague (Elspeth) has now collected the laptop, took it home and her son has now fixed the problem.

It is an important issue that patient and public members do not all have access to the internet and do not have access to the same technical support that academic staff have with their work computers. It demonstrates that social isolation can be lessened by this means and personal interaction in meetings could be continued.

Julia Jones: (Chair PIRg): We are delighted with the feedback about our two recent PIRg meetings by zoom since we went into lockdown and are so pleased that Tony (PIRg member), encouraged us to go online!  Attendance at the meetings has been good and it clearly offers more flexibility for some PIRg members who, for different reasons, found attending meetings at the University a challenge at times.  Moving forwards, this is a good opportunity to think about reorganising our meetings to offer people the opportunity to join by Zoom in the future. 

Sonya Prime: (PIRg Administrator): We are looking at the NIHR guidance to offer an extra £5 to all PPI contributors for remote working costs. At the beginning of July, our payroll team have confirmed this can be paid as an expense separate to other paid hourly rated pieces of work. This is currently only payable during the covid-19 period, the regulations are likely to change again once we get to the end of this tax year (5th April 2021) so will be reviewed regularly in line with University policy and guidance.

By Diane Munday, Wendy Ball, Kate Grey and Marion Cowe (PIRg members), Julia Jones (PIRg Chair), Sonya Prime (PIRg administrator) and Elspeth Mathie (Co-lead Inclusive Involvement Theme, Applied Research Collaboration, East of England).