Remote access, ELCI and co-production
Inclusive co-production means using remote access technologies to reach some groups of disabled people in their homes if needed.
Chronic Illness Inclusion is proud to feature in an exciting new open access volume from Policy Press on Covid-19 and co-production.
“Groups most severely affected by COVID-19 have tended to be those marginalised before the pandemic and are now being largely ignored in developing responses to it,” say the editors of Covid-19 and co-production in health and social care research policy and practice.
For this ‘rapid response’ publication, Catherine Hale and Alison Allam were invited to share learning from the Chronic Illness Inclusion Project on digital research methods designed to include hard-to-reach communities. Their contribution: ‘A place where we could listen to each other and be heard:’ Enabling remote participation spaces for research and co-production among disabled people with energy impairment beyond COVID-19 forms chapter 14 of Volume 2.
“Some disabled people are, and will remain, housebound, long after COVID-19 restrictions have ended. This is true regardless of the progress in disabled people’s right to participate in society achieved under the social model of disability. Many people with energy limiting chronic illness (ELCI) are in this category,” say the authors.
Back in 2018 Chronic illness Inclusion developed and pioneered a methodology for remote research among people with ELCI, many of whom were confined to their homes. This was part of the DRILL programme of disabled-led research.
The chronic illness community were experts-by-experience in convening in digital spaces long before the pandemic struck. Indeed, our community emerged with the evolution of the world wide web to allow networking through blogging and social media.
Then, in March 2020, the world caught up with us. The COVID-19 pandemic triggered a remote access revolution. It enabled entire populations, newly confined to their homes, to stay connected to each other online through digital platforms such as Zoom and Teams. While disabled people have been adversely affected by starkly disproportionate deaths and other inequalities during the pandemic, this remote access revolution had the positive effect of levelling the playing field for some disabled people. It afforded us equal participation in many areas of life that we had previously only dreamed of.
The innovative online research forums developed by the CIIP allowed people with ELCI to have their voice heard within disability research and policy making for the first time. They were designed for those who, even with reasonable adjustments (for example, travel and accommodation), are unable to attend meetings due to energy impairment and the ‘pay back’ that follows. The extended and asynchronous format of the focus groups provided adjustments to the fluctuation and cognitive fatigue that come with ELCI.
In this chapter we share process and lessons for more inclusive research design and service user involvement in future.
“The pandemic has shown that our exclusion is not inevitable. We must seize the opportunity provided by this unexpected remote access revolution to prevent a return to pre-pandemic inequality and exclusion.”
Read the full article for free in Chapter 14 of COVID-19 and Co-production in Health and Social Care Research, Policy, and Practice. Volume 2: Co-production Methods and Working Together at a Distance, edited by Oli Williams, Doreen Tembo, Josephine Ocloo, Meerat Kaur, Gary Hickey, Michelle Farr and Peter Beresford.