Protecting patients’ data in a digital NHS
At Doteveryone, we believe that technology cannot replace care, but used well it could support radical social and structural change, taking us towards a future care system that is sustainable, fair and effective.
Decision makers must recognise that technology can change and improve lives, but not without human support and not without a robust care innovation strategy that accounts for it.
Since the beginning of the year we’ve done extensive research with people who receive care and their families, care professionals, clinicians, policymakers, start-ups and providers to understand the current impact of technology in the social care and its potential to shape the future.
The outcomes are published in Better Care in the Age of Automation, which outlines three low cost solutions that must underpin the responsible use of technology in the social care sector; a long-term investment in better data, more relevant skills, and empowered communities:
The care system currently collects vast amounts of data yet current metrics focus on costs and processes and not outcomes for the individual, family or community.
And with 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.
Earlier this year we commissioned leading data scientist, and DataKind Executive Director, Giselle Cory, to review the social-care data landscape. The report, Better Evidence for Better Care, finds current data collection to be inadequate and that there’s not enough evidence currently available for commissioners and providers to effectively roll out new technology interventions into social care services.
Future innovation will be developed on the basis of these current, inadequate metrics, resulting in biased and uninformed decisions. It is therefore in the interests of the entire social-care sector to support a better care evidence base.
Recommendation: Measure what matters
What is measured matters. And better measurements can make a better care system.
That doesn’t necessarily mean more data. But it does mean more useful data, coordinated through a national strategy.
Doteveryone recommends the Department of Health and Social Care supports a new national data strategy for social care. This would sit within a new, well funded social care division within NHSX. It should measure the wellbeing and productivity of individuals, families and communities and incentivise the creation and use of technologies for long term benefits.
While this may cost money in the short term, this investment will ensure future care expenditure is truly cost effective.
Technology can never replace human care professionals and the complex, relationship-based and creative nature of their work. But used well, technologies can assist in mundane tasks, augment the job of caring, keep people connected, support access to community and economy and improve people’s lives.
Technology has the potential to change the way the care sector works, to improve efficiency and transparency and help people connect and support one another.
But more technology will also mean more tech support and more complex decision making on the front line. Care professionals will need the skills to do this.
Recommendation: Invest in skills
Doteveryone recommends the Department for Health and Social Care should establish a Royal College for Carers to professionalise the care workforce so they can effectively use technology to augment their vital skills of empathy, creativity and social intelligence.
The college will require funding, and more qualified staff will mean higher pay. But this approach will save money over the long term for both individual providers and the wider health and care sector. More well trained and supported staff will mean greater productivity, less spend on agency staff, lower turnover, higher quality care, and more capacity to use new technologies effectively.
What would a future care system with more empowered workers look like?
In a short film, 2025: A Future of Care, developed with Superflux and using themes that emerged in workshops with those on the frontline of care, we’ve imagined a positive future of care; one with empowered, trained staff who have the time and resources to listen to the people they support and work with them to identify problems and proactively find solutions.
Many benefits claimants are reluctant to adopt new technologies because they fear any change in their lives could jeopardise vital support packages.
Meanwhile older and disabled people often don’t see their own goals, needs, and ideas reflected in the technology available to use so aren’t motivated to adopt them.
Our research participants wanted to “flip the script”; challenging a culture of hostility, suspicion and condescension that prevented them using technology. They wanted to experiment, to share their own ingenuity and ideas in using and adapting technology to their needs and to celebrate ways technology could be part of improved access to the economy and community.
Recommendation: Empower the people that matter most
If technologies are to support people to live well, people must be empowered to adopt, use and improve them.
Doteveryone recommends that NHSX, with advice from a consortium of self-advocacy groups, funds a series of Enablement Panels run by and for disabled people, carers and families. This proposal reflects the ideas and hopes of our workshop participants as well as the critical need for a culture change so that more people can benefit from health and care technologies.
Rather than focussing on deficits, these panels would concentrate on the capacities and goals of the person being supported, their family, their community, and their support team. Over the course of several months, the enablement panels should listen, reflect, and explore how new technologies and services can help people achieve their goals and improve access to community and the economy.
The UK’s social care system is in crisis. And as we live longer but our healthy lifespans decrease, pressure on the system will continue to grow. Technology is one, but not the only way to “bridge the gap between finite resources and the growing demand”.
Better Care in the Age of Automation sets out how technology, used responsibly, can be part of the solution. And this is possible without necessarily throwing enormous amounts of money or costly new tech solutions at an already bankrupt system.
Investing in better data, better skills and a better culture will strengthen the care system so that future investments in technologies make meaningful change. This investment is needed now, as is the courage and imagination to see beyond immediate crises, to ensure we build a social care system fit for the age of automation.
Originally posted here.
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