by Penny Vicary
As COVID-19 research has increased and there are more Zoom meetings, it is important to include the voices of those who are not on the internet.
Penny has a long history of involvement work and contributes to a number of different organisations and research studies. Elspeth is co-lead of the ARC East of England, Inclusive Involvement theme. Penny and Elspeth have worked together on research since 2014, Penny lives in rural Norfolk and uses her mobile phone and post as her means of contact. She does not have the internet or a computer at her home. In early days of COVID it was not easy to access the post office.
Penny and Elspeth had a chat on the phone about her involvement during COVID-19, Elspeth wrote up some notes, printed them out and posted them to Penny (with extra envelopes and stamps). Penny then came back with comments and they posted it back and forth a few times, with texts in between. Here is the final version.
How has the pandemic affected involvement?
Overall, my involvement work has decreased and I have not been able to join some research meetings. The pandemic has magnified issues that were there before, ‘professional’ people are enabled and used to working at a certain capacity, due to their paid position, however, this new way of virtual working has assumed we want to be involved, or we have the strength or willingness or have been initially approached to see how we could be involved. To be part of PPI during COVID, some of us have been marginalised or forgotten. I am being asked to join Zoom meetings, use the internet, that is not representative and does not enable professionals and society to acknowledge that there is a small group (or a significant group in demographics) whose voice, and healthcare issues, has been highlighted by this moment in time during this pandemic but who are not being heard. Some individuals do not have the time, focus, knowledge, capacity, energy, inclination, financial ability to access their health care through the internet or do not wish to use it. While there is also the possibility that contributing by Zoom, individuals may not represent themselves as well, through this medium.
How have you been involved?
I am part of an established group, they were really good, sent me paperwork in advance, I had all the details to ring into the Zoom meeting (everyone else was doing Zoom) but I would not be, which was fine by me, although I am not keen on being on a mobile phone for hours. I thought I could use my phone but I have a contract which gives me unlimited texts and calls, but only a small amount of data. I cannot be part of research WhatsApp groups as I do not want to use up my limited data. I do not have Wi-Fi and do not know how to get onto Wi-Fi, I am just not interested. So, when I joined the Zoom meeting, (I have a set tariff), unknown to me I didn’t have enough money on my phone contract. I could not just phone in and no-one had thought about it. I was embarrassed, I felt bad and it gives them an insight into the limitations even on a mobile phone.
For a second meeting, I went to my friend house and they had a room I could use. I had to negotiate that, to use their house phone and then clean up after myself (COVID). I was going to ask another close friend but she was too poorly so I could not. I spoke to the PPI facilitator for an hour before, then then the two hour meeting and then another 30 minutes afterwards. I was on the phone for nearly four hours and I felt very poorly the next day. I had not considered being hands-free. This was a meeting about COVID research. The meeting was intense, I suffer from health issues with my face and I had not realised the strain I was under using even a telephone.
Compromise and Solutions to Involvement:
The PPI facilitator has realised there are studies she cannot include me in (as I am not on the internet), and she wants to include my voice, without me feeling as if I am compromising myself and becoming ‘professional’, as I would rather not participate. The compromise has been, the PPI facilitator has done all the hard work and found out how to get extra data on my phone, so I didn’t have to worry about finding another provider, sorting out how to do handset free (so I can talk into it) and that is a good compromise that I agreed. I wish to only be involved if I can receive a hard copy of the information and talk with researchers to give feedback on proposals. I have had to change and adapt and for the next meeting, I will go round to my friends again. There seem to be lots of conversations and negotiations before you can be included. Some focus on individual prescribing of involvement can happen if there is commitment to it and the time and energy on both sides. The PPI facilitator has been really helpful in finding solutions, she investigated mobile phone costs, etc. This requires PPI leads having an understanding of our circumstances and being able to be flexible and adapt to circumstances.
I would like to thank my friends (for using their house) and give them a thank you as a gesture. As I am no longer travelling to London, can I claim travel expenses to go to my friends? I understand payments have been slower because staff have not been around. However, I miss the small rewards, which were part of my involvement work, which has now stopped. As I am on a limited budget those small amounts I choose to receive only help in paying for my mobile phone, contribute to enabling me to purchase items that I would otherwise look to family members to gift to me. I feel I have some self-autonomy, financial independence though my involvement – as I enjoy the social mobility it has given me – confidence and knowledge!! and those small benefits like nice coffee, my expenses, which I could not afford, that enhance my quality of life which I feel is the reciprocity that gives me value, living with a cluster of health problems for many years, while I appreciate those looking for more financial reward.
I am concerned that there is an increase in studies which can only include those individuals who are on the internet, I feel that this would not be a good balance. There are lots of us who do not use the internet, would be unable to, would not wish to and we should have the right to choose.