Why health ethics (and other issues) need a long-term, system-level framework for debate. And what we’re doing about it
We’ve recently been involved in some interesting discussions about the ethical implications of the Beyond the Fog framework. They have shone a light on how difficult it is for people to grasp a future-focused system-level perspective within which to have ethical (and pretty much any) debates about the longer-term future.
Discussions have tended to focus on a single concern about the picture painted in the BtF report of a technology-enabled, person-centred– the concern was all about ownership and usage of the individual’s data.
In particular, there is concern about privacy and what might be done ‘to’ the individual by other organisations as a result of access to the data. And it’s also something that is high on the news agenda as potential routes to coming out of Coronavirus lockdown include various potential levels of surveillance of individual’s activity and health status.
These are important ethical questions — and worthy of discussion amongst those interested in health ethics (after all, the availability and potential for smart usage of the huge amounts of data that are becoming available along the cells to cities spectrum identified in BtF is the underpinning enabler of the sustainable system of the future).
As a result, worries over data are the most common objection when people first see BtF.
But to focus on this risks missing the point.
BtF isn’t a description of what we think will — or should — happen. It is an attempt at an extrapolation of the current megatrends that describes — at a whole-system level — what a sustainable health system could look like if the capabilities promised by the trends were to land at scale.
When you look at it at a whole-system level, the combination of the trends makes possible a system that represents the biggest revolution in our approach to health and care for hundreds of years — a whole new set of organising principles: focused on wellness, not just illness; geared around the patient/person/individual; providing, through a combination of always-on rather than episodic relationship with the system and new clinical and care roles in a re-imagined system; among other key changes shown in the table below.
We believe (and pretty much all of the more than 200 leaders across the sector to whom we’ve shown it largely agree) that it is the logical conclusion of the huge amount of innovation and development happening across areas such as genomics, personalised medicine, medical technology, AI/machine learning, the greater understanding we have about the psychology of health and the general socio-technological developments happening across may areas of life.
But these developments are happening at pace in an uncoordinated manner; and the response to them is happening in a piecemeal, reactive way based on today’s understanding of healthcare and today’s concerns. The Coronavirus is accelerating progress towards some elements of the system envisaged in BtF; but without the thinking having been done about the long-term implications and how to make them positive rather than dystopian.
So the question is not: “do we want or like this? Should we stop it?”. But rather: “this is happening: what are the issues we need to resolve and how do we do that?”
The only way to have that discussion effectively and get ahead of the issues is to do it within a system-level framework and shared language for understanding where things are going in the longer term.
And Beyond the Fog is the only such framework that we — and all of the people to whom we’ve shown it — have found.
We believe that there are a huge number of issues that need to be resolved and debates that need to be had. In Beyond the Fog, we’ve identified fifteen key building blocks (with many sub issues within them).
There are all kinds of ethical, practical, structural, societal, philosophical, economic and political issues that need to be addressed.
A presentation on ethical considerations by my co-author Andy Wilkins identified the following as a start:
And that’s just an ethics framing. Beyond the Fog provides a framework for thinking about these and many other issues within a truly long-term, system-level context.
It’s vital that the people at all levels of the system — from policy makers to system managers, healthcare professionals and educators, commercial organisations, the media and even the public — have a shared way of understanding what is coming so that we can build consensus around what we want to do about it and enable decision making to be aligned across the diverse siloes in a common direction.
To this end, we’re setting up Vision4Health as an independent not-for-profit with a mission to drive and widely promote this kind of longer-term, system-level thinking. We want to put more flesh on the BtF framework — to develop the thinking to the next level of detail and add more depth in key areas; we intend to provide a forum for debate on the big issues; and we’re keen to work with organisations across the sector to help them think about change in the context of the longer term.
There is currently no forum for this kind of cross-sector long term thinking. But it is needed if we are to realise the potential of advances in technology and medicine to drive a sustainable system fit for the challenges of the twenty-first century.
If you’d like to support us in this work and/or see how we can support your organisation with longer-term, system level thinking, please do check out the website and get in touch.
