Towards a manifesto for digital health #socialjustice

Towards a manifesto for digital health #socialjustice

What would a manifesto for digital technologies grounded in social justice look like? In other words, the development of digital technologies in health and care that enable an equitable distribution of wealth, opportunities, and privileges within society and which balance the interests of individuals, communities and institutions. After all the NHS is a collective endeavour – each of us contributing so that we all have access to health and care free at the point of demand.

A few weeks ago I co-facilitated the first of mHabitat’s three Digital Humanities in Health and Care seminars along with Dr Helen Thornham from the School of Media and Communications at the University of Leeds. Along with a group of practitioners, technologists and academics, we considered the role of ethics and justice in respect of the inexorable rise of digital technologies in health and care. Mark Brown, one of our speakers, talked about the contested notion of social good in sphere of digital health:

“Delivering public services is a political act. The shape of public services and how they feel are defined by political and historical realities. The decision of who pays tax, what taxes they pay, upon whom those taxes are spent and who it is that does the work is political. The ‘social good’ is not an uncontested idea. The culture of Silicon Valley is increasing looking, in the American phraseology, like a dumpster fire. Libertarian ideas run riot, with the very ideas that our public services in the UK are founded upon are seen as a deadly infringement of the rights of the individual to choice. Low tax, low regulation is the mantra. The ethics of digital creators, investors and developers may run contrary to our core purposes and ethics in running public services such as health and care”*

The recent general election saw the main parties making pledges about the role of digital technologies in their manifestos. You can find out what they had to say in a summary which you can find here. Tech UK developed their own manifesto which you can find here. In it they make the case for the government to commit £1 billion capital funds for the NHS and social care to invest in digital technologies as an enabler of transformation. They also recognise the impact of digital exclusion and poor digital skills on digitising public services and they make the case that improved digital skills will have a positive impact on social mobility. All of this is welcome but does this sufficiently address the topic of social justice?

Digital innovation in health and care without social justice at the centre and in the context of budget cuts and the normative assumption that there is not enough money to pay for the NHS, is problematic. The primary focus on efficiency can be a turnoff to practitioners who are worried about their jobs, and with reduced capacity in the system it is increasingly hard to carve out the discretionary effort required to innovate. Whilst Tech UK’s case for capital funding is welcome, purely tech-led solutions are less likely to be successful than those owned and driven by people – and so we need investment in people too.

What sorts of challenges might we want to set ourselves in order to orientate our endeavours in digital health towards social justice? One way is to check technology innovation against the seven principles of the NHS Constitution (2009) which sets out the respective rights and responsibilities of patients, citizens, practitioners and NHS organisations:

 

  1. The NHS provides a comprehensive service, available to all
  2. Access to NHS services is based on clinical need, not an individual’s ability to pay
  3. The NHS aspires to the highest standards of excellence and professionalism – high quality care that is safe, effective and focused on patient experience
  4. The patient will be at the heart of everything the NHS does
  5. The NHS works across organisational boundaries
  6. The NHS is committed to providing best value for taxpayers’ money
  7. The NHS is accountable to the public, communities and patients that it serves.

So here are some questions, aligned to those principles, which may be a starting point:

  • Fairness and equity – who benefits from technology and who might be left behind?
  • Accessibility – is technology enhancing access to services or benefitting some people over others? What about people who don’t have access to the internet? Are we creating or removing barriers for disabled people?
  • Digital skills – what about people who don’t have the confidence, skills or motivation to use digital technologies? How are we meeting their needs either through assisting them to develop those skills or to offer alternatives?
  • Who pays – how is technology funded and are we inadvertently compromising the NHS as a free at the point of demand service?
  • Whose labour – this is a broader consideration about shifting labour and responsibility from the state funded NHS to patients and citizens. We should be asking ourselves if this shift in responsibility and associated labour is fair and equitable and could it put undue pressure on people who are already disadvantaged?
  • Safety  – are we applying high standards of clinical safety to technologies for use in the NHS by ensuring we are careful and transparent about how data is collected and used, and by baking in clinical safety from the outset?
  • Relationships – to what extent is the relationship between a practitioner and someone accessing a service being strengthened and enhanced or impoverished through use of technology?
  • Unintended consequences – are we creating unintended harms or longer term consequences and how can we anticipate and mitigate them?
  • Making the most of our time – does technology help us expedite the transactional labour of patients, citizens and practitioners (for example, booking appointments) as well or better than we do now?
  • Evaluation – are we building in measurement from the outset so we can understand if technology is delivering high quality care and good patient experience?
  • Codesign – is codesign with end users (most often patients, carers and practitioners) built into every stage of technology development, deployment and evaluation? The ISO for human-centred design is a useful resource and a means of evidencing this approach for developers (see section 6 of the NHS Digital Assessment questionnaire for developers).
  • User, chooser and buyer – the person who uses the technology may not be the same person who chooses it and who may in turn not be the same person/organisation who buys it. Is it clear where the technology fits and are the respective benefits for the end user, practitioner, provider and commissioner clearly understood and articulated?
  • Complexity – the NHS and its relationship with other sectors is complex and cross-cutting. It is clear how the technology will work across a care pathway and beyond organisational boundaries?
  • Sustainability – is the underpinning sustainability (business) model for the technology good value for taxpayers and does it enable the most effective, fair and sustainable use of finite resources?
  • Data and privacy – what data do we need and are we collecting it and using it (a) transparently and (b) in the interests of patients, citizens, practitioners, organisations and wider society?
  • Algorithms – are the algorithms within technologies transparent and accountable? And do they inadvertently bake in prejudices and compound biases through the data that feed them?

My hope is for the development of digitally enabled services flourishing in a well funded NHS that doesn’t have a narrow view of efficiency and engages with issues of social justice and equity – one in which we create the best possible future for citizens underpinned by the principles of the NHS Constitution. Decently funded services and secure staff will be in a much better position to innovate. What else ought we to be considering if we’re creating for a socially just digital manifesto for health and care? I’d love to hear from you.

ps. We will be publishing a paper for each of the three  Digital Humanities in Health seminars which you can find on mHabitat’s open library.

pps. You can find the a post with the transcript of Mark Brown’s talk here.

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