Involvement off-line during COVID
By Penny Vicary (PPI contributor) in conversation with Elspeth Mathie (University of Hertfordshire, ARC East of England)
Penny’s last blog in July 2020 reminded researchers to include those who do not use the internet. Now in 2021, we are in another lockdown and we revisit our conversation about involvement (Patient and Public Involvement (PPI)) in health and social care research. The shift to using digital tools such as Zoom and Teams has largely become the default and virtual methods have benefitted many. However, Penny reminds us that it is important to keep offering people choice, especially for those who do not use or have access to the internet. She wants to remind researchers that if they want their research to reach different populations, they need to think about people who do not respond to emails and cannot use their phone data.
Penny has a mobile phone that she uses to communicate with researchers either by conversation or by text. Penny does not use the internet, or email and does not have a laptop due to lack of economic independent choices. Broadband is not a priority versus the challenges of health needs, affordability of healthy living to keep well. She wants to remind us that using the internet should not become the only way of communicating.
My involvement over the past six months
I have continued to be involved in a couple of studies whilst another paused due to COVID. Researchers and my PPI lead have enabled me to continue to take part. I am sent papers by post (from a researcher who is working at home) and I have felt included, it is manageable. I still go to my friend’s house sometimes to use their home phone (or I did before lockdown) to join meetings. I know the researchers appreciate my input and it is reciprocated, there is a mutuality. The researchers are very open to suggestions and there is a good perspective of what is going on.
In another study, I could have joined the meeting but I felt quite happy to approach the chair, and he represented my views at the meeting. Before the meeting, we had two long conversations, some text messages and he also wrote to me and it was possible to contribute although not at full capacity. Things sometimes do get misinterpreted and I could see that in the minutes, but I clarified the point and he amended it. It offered another way of being involved, without having to join a long meeting which is especially tiring for someone with health conditions and when talking with others, which includes professionals.
Lessons from education and access to internet
There is a correlation between issues around education and involvement in research. The issues about school children and their access to the internet highlights the importance of enabling people to contribute and participate. As COVID continues we see the same families, who are trying to connect with on-line schooling and who do not use the internet or do not have enough data. I think the debate about free data and access is really interesting and has similarities for those of us involved in research.
Research involvement requires diversity, which covers social, economic, ethnicity and others, and it comes down to economics, it is really important to support PPI members who don’t have access to the internet as they are representing the most vulnerable, especially during COVID. People are now realising how difficult it is to participate where families share a mobile device, do not have fast internet and an up to date laptop.
People with low incomes, may have poor internet connections, old mobiles passed down from others and no back up when things go wrong, such as IT support. Educators and researchers must recognise they are asking people to use their personal phones or devices which can be like cars, the more you use them, the more the batteries run down! It costs money (and uses data) to home school or join a meeting.
What choices are available is key, if you are on a low income you face daily decisions on what to spend our money on. For example, choosing a packet of biscuits (with low nutritional value) as they are cheaper than an apple or choosing food rather than data. Signing up for a long-term internet contract can be cheaper than buying data on a one-off basis. These choices, challenges and inequalities have been illuminated by COVID and something the academic community may not fully appreciate. Some choices are not available to those on low incomes. Choice is contextual and might be limited by economic factors, ability or confidence.
Wider Implications for Health
There is also a wider debate about access to health care if you do not have internet access. Is it about having really good broadband, about speed (bandwidth) and the cost of data. For example, GPs who ask people to send photos of health conditions via their phone costs money and the NHS is supposed to be free to all. There are also possibilities for misdiagnosis if people are not seen in person. It is important to consider how health appointments are carried out in the future and that all people have equal access to health whether they have the internet or not. We cannot all search and access information on the internet or respond to health appointments in that way.
Virtual Involvement: The Social Aspect
Having virtual meetings has enabled some people to connect during the COVID. Chairing a virtual meeting compared to face to face may require different skills. We may miss body language on screen and some people may find it harder to have their voice heard in a virtual meeting. You do not have the physicality of recognising that someone is being left out. Those whose visual ‘image’ is not represented on screen, those who do not have their cameras on (through choice or older devices which do not have cameras) may be ignored. It is important to recognise that it is difficult for those joining on a mobile phone rather than a device with a larger screen.
We are also missing the social aspect of meeting people face to face, the small conversations and interactions before, during and outside the meeting. It is hard to make and build new relationships with individuals whilst attending virtual meetings. The social interaction is missing. Involvement in research also used to have other benefits for me, for example, paying for a travel to a city and after a meeting I could go to the cinema, have a nice cup of coffee and meet up with others.
If someone said to me, PPI was always going to be in the house, you are never going to socialise with anyone, just a square box, I would say forget it!
Looking forward, I would ask researchers to remember to offer choice and not let on-line become the default.