We need better evidence if we are to have better care

Social care data is not producing enough value to justify the effort. Here’s what we can do to change that.

Photo by rawpixel. Adapted by James Barclay.

Doteveryone cares about evidence for care because we are interested in how new technologies can and should change social care in ways that work in the best interests, and respond to the real needs, of people who give, receive or who work in care.

Since the beginning of the year, we’ve conducted interviews, workshops and site visits with people giving, receiving, or working in care. Then we commissioned leading data scientist, Giselle Cory, to investigate some of the questions their stories raised.

What we found, as described in detail in Giselle’s report, Better Evidence for Better Care is that there is not enough evidence currently available for commissioners and providers to effectively roll out new technology interventions into social care services.

Insufficient data is collected on the areas that matter most, including the outcomes for people who receive care. Much of the data that exists is fragmented between services, locked in proprietary systems or trapped on paper in filing cabinets. The data available is not sufficient to support effective decision making on the front line or at strategic levels. It is not possible to understand what is happening across the social care sector and inside the systems it is made up of.

With so little information, commissioners and providers must make critical decisions armed with little more than marketing hype or political pressure. With so little information on the wellbeing of communities, there is little incentive for long-term, joined up thinking that can build capacity and reduce future needs.

“There’s a striking lack of evidence about outcomes from robotics with older adults and social care… My hope for the future is that we’re evidence-led, that we’re not doing robots for the sake of doing robots. That we follow evidence not politics”

— Dr Chris Papadopoulos, Caresses (Culture-Aware Robots and Environmental Sensor Systems for Elderly Support) Project

Moving data from burden to benefit

As we make these changes, we must keep the experiences of people on the front line at the front of mind, investing in skills and tools that work well, rather than increasing the already crippling administrative burden.

On average [care workers] spend about one and a half hours per shift on paperwork. But there’s rarely time to evaluate. It’s all tracking — no checking its actually working. The CQC talks a lot about learning lessons. In order to do that you need to take time to look across the data.”

Morten Mathiesen from Digital Care Planning Service, Sekoia

This is both a technical and cultural problem: when a system is under severe pressure, it can be natural to prioritise doing the work that is most visible to managers, that may result in a poor inspection or even services getting shut down.

Whilst data can help us to understand problems and imagine possible solutions, the act of collecting data takes time and effort. Targets inevitably affects what we prioritise and the decisions we make. They also impact on the culture of providing care, and the relationships between services, staff and people within the system.

The n=all fallacy: the belief more data always means more understanding

This is what Mireille Hildebrandt describes as the “n=all” fallacy — the trap of believing that since a bit more data can help us understand a system a bit better therefore collecting more data will always lead to more understanding… until eventually we collect all of the information about the system, have perfect understanding, and can make perfect decisions and design a perfect system. This belief, running through highly complex, heavily bureaucratic systems becomes a pressure to collect ever more information, with the information eventually becoming more important than the work.

But data is never complete and decisions made with the assumption that it is complete will be flawed.

Data is intended to be a tool to support human decision-making. We can and should regularly review what effect data collection and analytics practices are having on work, and to check whether they are serving our evolving needs.

Collecting better data for better care

Right now the data we capture is fragmented between systems, so does not support understanding of how changes in one service might affect others. Like how cutting respite services for family carers can mean their health suffers and they have to move their loved ones into care homes at far greater expense, or how cutting early intervention services can lead to higher long term costs elsewhere in the system as people’s health conditions worsen before they find help. Investing in interoperability is vital for a holistic understanding of the system.

Whilst the NHS and Adult Social Care services laud early intervention, person-centered services, managing and developing community assets and moving towards sustainability, the data landscape needs to catch up so we can focus resources on making these a reality on the ground. Measuring wellbeing outcomes for individuals and for communities could go a long way to incentivising this work.

We need a profound change in how we think about data in care.

We need to move away from a culture of endless tracking and towards a more flexible and responsive system that enables learning and improvement.

This requires us to make a decision, as a whole society, about the outcomes we want to optimise for in a world where more of us live longer with disabilities and chronic health conditions. Whatever the rhetoric about choice and sustainability, in the end, we manage the things that get measured.

We need to decide as a society what social norms, services, and information systems we want supporting us, all to contribute and connect throughout our whole lives.

The above recommendations are based upon findings from a report we commissioned by Giselle Cory, Executive Director of Datakind UK, which explores the limits of what is currently possible with the data available in the care system. Read the full report.

About Better Care Systems

Better Care Systems is a project by Doteveryone exploring how we can build better and fairer care systems in a future of robots, automation and smart technology.

Throughout the project, we’ve been asking carers, technologists, activists, and people who use care services, (and many who fall under more than one of these too-limiting labels) to imagine new futures of care in which the system is fairer, more sustainable and more effective.

We’re thinking holistically about care, exploring its role in the social infrastructure of many different aspects of people’s lives — not just in the paid social care sector, or for the elderly.

Photo by Roman Kraft on Unsplash. Adapted by James Barclay.

We need better evidence if we are to have better care was originally published in Doteveryone on Medium, where people are continuing the conversation by highlighting and responding to this story.