The DACHA study was set up following a series of studies looking at how the UK’s health and care services collect data on the health and wellbeing of people in care homes.
This group of people – often very vulnerable – haven’t always had their needs recognised by policy makers or those commissioning the range of health services visiting care homes. COVID-19 both exposed our lack of data about care home residents and accelerated policies to improve the information collected.
Unlike other countries such as the US and Canada, the UK has no system for standardised data capture for residents in long-term care settings. While care homes have always collected huge amounts of information about their residents for themselves and other organisations, the need is to develop minimum data sets that are usable and useful for those working in and with care homes.
The DACHA study, funded from 2019 to 2024, aims to bring together existing evidence and data sources with care home-generated resident data to deliver the UK’s first care home minimum data set. The study’s focus is older adults living in care homes.
Older residents in care homes are living with a range of health and social care needs, often including dementia. Care homes offer 24/7 care to support people to live as well as possible.
Asking questions about a complicated concept
DACHA was designed pre-pandemic. It recognised that the importance of data about care homes and their residents wasn’t always appreciated.
But when the pandemic struck, understanding of its importance rapidly evolved. People valued high quality, consistent, and accessible data when it came to recording information on the health, care, and security of care home residents. It was clear to everyone that much of that information wasn’t being consistently collected or collected at all.
“We’d anticipated that we would have to educate people on why care home data was important, and then suddenly - with the pandemic exposing how little we knew about residents - everybody understood.”
By late 2021 the DACHA team were in the second phase of their study. Earlier consultations had identified being able to measure residents’ quality of life was important. There was a recognised gap in how this information was systematically collected and a need to consult on what measures were considered helpful.
The concept of what makes people's lives enjoyable and worth living is a complex topic, and the study needed the right range of views to produce results which both reflected the experience of living in a care home and would support and enrich the lives of older people. To engage further with a wide spectrum of relevant stakeholders, the DACHA team involved care home residents directly, old age specialists, care home staff and managers, carers and relatives of care home residents, primary care professionals and commissioners.
Why Thiscovery?
The team saw the potential in a live demonstration of the platform at the annual THIS Space conference in 2021. Earlier in their process the DACHA study had held consultation through online focus groups, but the team were intrigued to see a new way of holding consensus-building work online.
“The user interface looked intuitive and we were also interested in Thiscovery’s new methodology and ranking system.”
Thiscovery also offered greater scope around analysis than other online tools. The team liked the way it was able to differentiate between different groups’ responses, and provide a sophisticated way of managing data.
Two teams working as one
Thiscovery puts collaboration at the heart of any project. We worked with the DACHA team from start to finish, learning about the intricacies of the topic and the participants to ensure they could be engaged well in the consultation. This ranged from support on how questions are best phrased online, through to mock-ups of tasks and support with task design.
We helped them understand that they needed to be specific and clear about exactly what they were asking people to understand and respond to.
“Even our team didn’t have a consensus on what we meant when measuring ‘quality of life’. The process with Thiscovery helped us to get clarity on the topic.”
The first task was designed to find out people’s opinions about two key elements to consider when measuring care home resident quality of life: the features of a quality of life measure; and the most important things to capture through the measures.
The insights from task one helped the DACHA team compare people's views about what is important in a quality-of-life indicator against existing tools. Tools that most closely reflected people's preferences were then presented in task two for review.
Continuous improvement
This project delivered credible results and gave both teams a learning opportunity. The DACHA team found they needed to address the perpetual challenge for online consultation - investing effort and imagination into recruiting participants. Despite challenges the team still found participation more than doubled compared to their pre-Thiscovery round of consultation, increasing from 40 to more than 80 responses.
The platform itself developed from some of the DACHA team’s specific needs, particularly around ways of processing data and presenting it back to participants in sequential rounds. This helped everyone (including future Thiscovery users) to benefit in the long-run, with some of the development completed for DACHA remaining as a core component of Thiscovery.
Getting the right information to make a positive change
The results from these surveys allowed the DACHA team to make rapid evidence-based decisions on what care home measures and domains were seen by stakeholders to be the most important.
This had a swift impact in the DACHA study’s pilot, which used all the quality of life measures identified in the work held on Thiscovery. This pilot is now being rolled out across three integrated care sites in England.
“Thiscovery worked so well for us. It's a new way of thinking about how we partner in research.”
DACHA - Developing research resources And minimum data set for Care Homes’ Adoption and use - is an ARC East of England supported study being led by the University of Hertfordshire. It's funded by the National Institute for Health and Care Research (NIHR) Health Service Research and Delivery programme (HS&DR NIHR127234). Find out more about the DACHA study here.
