doteveryone

Why we can talk about this

We spent the last eighteen months researching and redesigning care systems with people on the front line of care – people who give care, who work in care, who receive care, who organise care and who fight for better care, and those who do several or even all of the above. 

We came up with three key principles that were necessary prerequisites for technology developed for care to be responsible:

• Better data: understand the reality on the ground, beyond targets and headlines.
• Better skills: support and train those who work on the front line of care to use the best of technology and the best of human compassion & ingenuity.
• Better culture: respect the knowledge and needs of those who receive care and support. Reject the culture of fear and suspicion which prevents disabled, chronically ill, elderly and frail people from participating and thriving in society.

All of these remain true and necessary in a global pandemic. 

It is tempting to rush ahead and discard responsible principles as ‘nice to have’, as a luxury for better times. But these principles will help us do more good, more effectively, and avoid the waste of pouring resources into the wrong solutions.

The social care sector has been experiencing a slow motion catastrophe for a long time; underfunded and overlooked to the point of massive unmet need, exploited workforce, bankrupted providers handing back contracts to near-bankrupt councils. These principles were relevant then and they are relevant now.

Working with the wrong data, from guesswork and arrogance, without checking in with the experience and knowledge of those on the ground will lead to bad policy and bad or broken solutions which will kill. 

Failing to support the workforce appropriately and effectively will cause bottlenecks and pressure people to work while infected, which will kill. 

Fostering fear and suspicion centred on vulnerable and high-risk people, and on marginalised people, blaming some populations and treating other populations as disposable will drive hysteria and result in advice not being followed, which will kill.

It was good to hear, on 17th March, that the Prime Minister broadly agrees with the need for “greater support for NHS and other staff. And it means much better data and much better technology.” But this must be extended explicitly to social care.

We are not epidemiologists, and will refrain from commenting on specific mitigation strategies of COVID-19 itself. But building on our previous work, and on continuing interviews and research, we have recommendations for civil society and technologists relating to tech for care and tech-related care policy in the UK at this time.

Don’t build based on bad data

As has been widely reported, on Monday 16 March, it was revealed that the UK Government had based their initial response to COVID-19 on incorrect data and modelling. A widely circulated report from Imperial College’s COVID-19 response team concluded that continuing along this path “could have led to an estimated quarter of a million deaths in the UK.”

The data currently available about infection is partial, gappy and biased; celebrities are tested while key workers with respiratory symptoms are not. Asymptomatic carriers pass undetected, carriers with non-respiratory symptoms are misdiagnosed. Any app or guideline which takes current numbers as gospel truth will misrepresent the situation, produce false conclusions, and cause harm.

We’re pleased to see that the Government appears to have reacted to this initial error by pivoting to invest in better data and their 18th March proposal to increase testing to 25,000 a day will improve our understanding of the virus and its spread, even if it takes time to implement. 

Those who still want to work on or with COVID-19 data might consider proxy data. In the absence of COVID-19 tests, some centres are instead tracking emergency room visits with ‘flu-like symptoms’, in the full knowledge that these will be incomplete. Potential paths for virus spread are being investigated through instagram– again with the knowledge that details will be missed. 

Responsible tech, grounded on real needs

It is natural to feel driven to spring into action and rapidly leverage existing skills and resources to serve the most obvious and urgent needs. But making a significant positive impact requires that we target resources effectively.

For individuals who want to use tech to support care, we recommend joining a network like the coronavirus tech handbook, where people are pooling understanding and resources. The solution you came up with may already be in development- join to contribute, or build on and localise someone else’s solution. Look through collected reports of unmet needs and bottlenecks being reported, and identify where your skills could do the most good.

For organisations trying to act responsibly; be flexible and willing to redeploy resources in response to needs reported by those on the front line, rather than working on guesses, or rigidly defending previous working practices or power structures. European brewers for example, noticing bottlenecks in supply, are pivoting their production from booze to hand sanitizer. One Italian start-up has helped save the lives of ten Covid-19 patients by 3D printing ventilator valves.  Research laboratories are pivoting to support testing, publishers of medical texts are making them openly accessible. 

While social care sector has some universal, urgent needs like support for self-isolating workers, and protective gear, many needs will be more local and contextual; freeing up staff to care for loved ones, delivering food and prescription medication locally, supporting people to stay connected by phone or online.

And despite pressure, continue reflecting on the potential consequences of tools and solutions you develop. A quick Consequence Scanning exercise may help you improve designs and avoid harms – could the app you’re developing to track infected people’s contacts actually open them up to stigma, abuse, even attacks? Could a tool to monitor critical supplies for healthcare workers be accessed and manipulated by price gougers?

Considering consequences does not shut down or slow down innovation during a crisis; it improves our ideas, and gives time to consider the different possibilities of our new situation and new opportunities to help.

Most importantly, if you are creating tech solutions to support health and care workers, or chronically ill, disabled or elderly people, listen to people who will be using it or impacted by it. 

Don’t let fascism creep in with quarantine

Responsible tech for care will soon be responsible tech for everyone. 

Disabled and chronically ill people in the UK have faced intense surveillance, suspicion and hostility under austerity, with the UK Government’s “grave and systemic violations” of their rights criticised by the UN. 

Learning from their experiences and listening to their expertise is vital if we are to balance safety in a crisis with the protection of human dignity and fundamental rights. 

The anti-terrorist legislation that granted the executives of many countries additional powers in the wake of 9/11 is still in place and continues to disproportionately affect marginalised communities. New measures put in place for public safety during the virus must, despite the pressure and urgency, be properly scrutinised and include time limits for review. 

There are reports from Wuhan that facial recognition and body temperature tracking technology put in place during quarantine are not being removed, and are already being repurposed for human rights abuses.

“Quarantine becomes arbitrary detention when there is no doubt or legal reason a person is forced to be in a particular place and not allowed to apply for judicial review,” said Ford Liao, professor of law at the Academia Sinica in Taiwan.

Palantir & Clearview AI, both of whom have faced criticisms from human rights and ethics campaigners, are already in talks with the US Government for rapid roll-out of far-reaching surveillance tools. 

The UK Government’s Coronavirus Bill permits for mental health patients to be held in detention for an indefinite period of time (current legislation includes time limits), under the recommendation of just one doctor (current legislation requires two). The Bill also permits the police and immigration officials to detain people who they suspect are infected. The potential for abuse and disproportionate impact is massive and potentially catastrophic. 

As the crisis continues mental health services may need to operate with fewer resources, and people who wilfully risk others’ health may need to be detained. But these powers must be scrutinised and include checks and balances as well as clear time limits.

Support NHS and social care staff

Identifying and paying care workers

The Government has provided assurances that NHS staff will be paid while self-isolating. Over 100 MPs have signed a letter to Matt Hancock to provide assurances that social care workers will receive full pay while self-isolated or sick. 

But measures to support those who work closely with high risk groups must acknowledge the complex, often murky reality of the care sector: 

• Pay is already low and exploitation – including wage theft and use of loopholes such as unpaid travel time – is endemic. Delays in payments or promises of future rebates will not be tolerable for families already on the edge. If sick pay is managed through agencies, rather than paid to workers directly, it must be administered with care so as not to be absorbed by unscrupulous agencies.
• Work is irregular and complex, so determining a worker’s ‘full pay’ will not be simple. Around 60% of home care workers employed by an agency are on a zero hours contract. Many workers sign up with multiple agencies and private clients concurrently. Replacing a person’s pay through just one agency, or based on just one past week’s wages will not reflect their true income.
• A significant proportion of care work (estimates range from 20% to 50%) is provided through the grey market, as opposed to a registered provider. Many find work advertised in shop windows or on Gumtree, or through word of mouth. Many workers facing the highest risks – both for themselves and the people they work with – have no formal training and few records of employment. Failing to support these people will mean more infections.

The UK has the second lowest statutory sick pay in Europe, and does not offer  self-employed people any sick pay. This needs to change. In the instance that such broader change does not come rapidly, specific targeting must be done intelligently, recognising the complex reality of the sector.

Respect the expertise of marginalised people

The general public has responded to reports on the strain facing the care sector with outpourings of support; thousands of mutual aid networks have sprung up.

These new mutual aid networks are likely to gain from looking at the work and lessons of their predecessors including queer care networks, rare disease support groups and their alliances, and marginalised and minority care networks. People who have been overlooked, stigmatised or disbelieved by officially sanctioned healthcare have ideological and practical expertise to share. 

Respect the expertise of care workers and support newcomers

Suggestions have been put forward to redeploy healthy people employed in industries impacted by social distancing, hospitality and entertainment industries in particular, to care work. 

This may be necessary, but any such hiring must include support and training. It would be easy to assume that a person moving from a highly qualified, high status role to a job with few qualifications, will find the transition easy. But this will not be the case.

There are few guaranteed simple jobs in care. A newcomer might be scheduled to make a pleasant and brief visit to give lunch and medication reminders to a frail person, but then find they have fallen badly, become incontinent, or have a fever that is causing hallucinations accompanied by paranoia and agitation. 

It will be essential to draw upon, recognise and recompense the expertise of experienced care professionals and registered managers. This will need to be amplified with appropriate technology; such as webinar learning and on the job mentoring; someone who is self isolated can coach and council over the phone.

Better care, skills and culture remain critical for social care

The pandemic has caused changes of a scale and speed few could imagine. But our principles, written when the social care sector was already in crisis, remain relevant. 

These principles are not ‘nice to haves’ or luxuries for easy and simple times, but key signposts to ensure precious, scarce, resources are not wasted on ineffective solutions and perverse incentives. 

• Better data: understand the reality on the ground, beyond targets and headlines. In a pandemic: remember many cases will be missed and all data is partial.
• Better skills: support and train those who work on the front line of care to use the best of technology and the best of human compassion & ingenuity. In a pandemic: support workers to remain healthy, and train new and redeployed workers
• Better culture: respect the knowledge and needs of those who receive care and support. Reject the culture of fear and suspicion which prevents disabled, chronically ill, elderly and frail people from participating and thriving in society. In a pandemic: refuse to permanently sacrifice fundamental rights, refuse to blame or stigmatise vulnerable populations, listen to the expertise of people who have been running care networks in the margins for many years.

Care was critical to the functioning of our society and economy before the first positive test on January 31st, and it will remain so when a vaccine is available. As author, Matt Haig tweets: 

It’s a strange irony that the people whose wages have been suppressed for years by governments who have devalued them, are the ones expected to be on the front line in a time of crisis. The teachers, the nurses, and all those public sector heroic workers who serve society itself – @matthaig1 17 March 2020