Since the Covid-19 pandemic, the UK’s health and social care system has increasingly relied on data-driven systems to deliver medical care and public health intervention to tens of millions of UK residents.
After developing a reputation as campaigners on Digital Exclusion, The APLE Collective were approached by Ada Lovelace Foundation and the Health Foundation to fully understand the impact relating to the rapid move towards data-driven systems and begin exploring to what extent the increasing reliance on digitalisation within health services affected already existing inequalities.
Initial discussions shared APLE Collective’s approach to addressing poverty WITH lived experience and how if we were to become involved in research with Ada Lovelace it was key that we incorporated a participatory approach and were involved in the design, delivery, and analysis of the research. Fortunately, Ada Lovelace staff (Kira) were very much on board with participatory approaches and meaningful engagement. Approaches to research were discussed and negotiated, with a budget developed by APLE Collective to cover the full costs of member engagement in research. This process was emergent and both Ada Lovelace and APLE Collective developed the ways of working as part of a conversation that developed into a strong working relationship.
The involvement of peer researchers helped shape the research methodologies and ensured it was relevant to the experiences of people who were on the receiving end of this growing reliance on data driven health care systems, thus adding value to the research process.
On completion of the research element, members of the APLE Collective had an opportunity to meet back up with Kira and reflect on their experiences and time whilst working alongside Ada Lovelace and the Health Foundation. Through the creation of a podcast, a lively and engaging debate captured some thoughts, memories, and highlights of this amazing journey.
To contextualise some of the APLE members reflections, it is worth noting that generally, people with lived experiences of issues that continue to keep them marginalised and/or trapped in poverty are often approached by external third parties and stakeholders. Their ‘lived experiences’ are sometimes felt like a topic of the month or sought after as part of the wider emphasis being placed on the involvement of utilising this buzz word/phraseology. Our communities have, in the past, felt like their insight and experiences have often been ‘extracted’ with little emphasis placed on developing relationships, presenting back findings, and providing information as to where the data has been disseminated. We have often wondered if ‘our data and insight’ has made a difference to the issues we face or how it has, in fact, been received or used. So why then did APLE members get involved and embrace this opportunity?
“I was frustrated on how the system (accessing health services) is at the moment. It was important to share my insight and experiences to help improve access to services for people“.
TK, Expert Citizens
“Going digital is good for some people but when you are in poverty, it creates too many barriers. If you are not digitally savvy or can’t afford the internet or a device, you are excluded. You can’t send photos to your doctor, you can’t complete e consult forms….It is important that people realise this and I felt I could talk about this.”
CM, Scotland Poverty Truth’
“It is important {to do research}, but it is only as good as the data collected, it’s dissemination and ability to positively influence policy and practice. It is also important to think about how it is ‘presented’ and should consider its audience.”
“For APLE it was important to remain true to our core values, ensuring we worked collectively and respected each other’s varying skills, abilities and experiences. Adopting the peer research approach ‘was an invaluable aspect to this piece of work’, as it was able to be conducted by people who are experiencing the problem being researched.”
“We weren’t officials and were already part of the community which ensured a more comfortable setting, whereby people felt able to share their insight and experiences and we were skilled in the ability of getting people to feel at ease and able to open up’.. Gathering the data became ‘quite conversational, yet remained focussed and was well received.”
APLE Collective members
This collaboration was entered into with an open mind with APLE members defining their understanding and experiences relating to ‘inequality’, ‘data’ and ‘digital health inequalities’. It was important to own this terminology and give meaning to ultimately create positive change through understanding. For APLE:
‘Data is a collection of knowledge and experiences – often portrayed in a statistical format with less emphasis on the qualitative information and insight’
Insight and understanding are more than statistical outputs and giving meaning to the information gathered is invaluable to create the progressive changes needed. However,
‘It can be misinterpreted and/or misused and can be quite clinical in how it is presented’
SP Experts
‘What would have added value, is if APLE members could have been part of the evaluation process, ensuring our voice was interpreted in the way in which we wanted’
Tracey, Thrive
For APLE:
“inequality is not having equal access to services”
“not having your voice inform debates to lead to better advise solutions”,
“It is the ‘unequal distributions of funds and resources to deprived, left behind or forgotten communities..”
“It is ‘waiting months for appointments for mental health issues….dying younger’, living in damp housing or not having the bus fare to get to the doctors”
“It is many things … it is everything that holds us back”
APLE Collective
In summary, APLE members reflections of this approach and relationship was positive:
‘I enjoyed the research and learnt a lot .. I look forward to the conclusions and hopefully – solutions’
C.Mockford, Scotland Poverty Truth
‘I enjoyed it and hopefully it brings solutions to modern day problems’
T.Knight, Experts
‘The research made sense. It was a really good piece of research and a lot of information came out. I hope people pay attention to it and not just put these findings ‘on a shelf’. Decisions should not just be left to those who have some kind of vested interest … but made with people who are reliant on healthcare services’
APLE Collective members
‘Some people were so grateful to have their voices heard … {their contributions} were in response to the anger they felt and how upset they were with primary care etc… hence their voice was important… I also think that there was learning on both sides
BS, Scotland Poverty Truth
