Imajine scenario response – Colette Marshall, Director of Operations at Diabetes UK

In the latest response to the IMAJINE scenarios exploring the future of European regional inequality, Colette Marshall, Director of Operations at Diabetes UK, explores the future of diabetes, its treatment, and management in each scenario.

Looking over the IMAJINE scenarios, my first thought was that the importance of place was very evident. Place-based thinking has become very important to our work at Diabetes UK, reflecting on the sense of what is local and what is community, and what that means for diabetes. 

There’s also a question around who holds the levers of power and money when it comes to healthcare – and who would have the desire to shape the healthcare agenda. The pandemic has taught us that health is an absolute priority for both individuals and communities, in terms of quality of life but also issues that preoccupy national governments like the functioning of the economy or issues around homeland security. Poor health in your population will make you vulnerable, no matter how good your healthcare system is.

In much the same way that our UK Space Agency respondent revealed the ways that activity in outer space was potentially significant for the future of regional development, healthcare and population health is revealed to be an even more important issue than regional policymakers might previously have thought.

Why is the place-based element so significant?

It’s a question of who is making the decisions about health inequalities. Who cares, and has the funding and the traction to do something? And what do communities do, how are they heard.

Healthcare is really interesting because it deals with issues from a medical and clinical viewpoint, but it’s also about how people live, what agency they have, and what facilities are present in their local communities. In the UK context, there’s a move towards healthcare decisions being more geographically localised. That can lead to much better targeting and responsiveness to local needs, but it can also be a way for central authorities to devolve responsibility without providing sufficient resources or expertise.

The other aspect is the power of digital technology to offer new ways for people to work remotely, to access resources remotely, to find peer support and make new connections – a community that is not place-based but topic-based or meaningful in some other way. Yet, we still find that online communities discussing diabetes often group together by region; they want to meet and speak locally, because there’s a commonality of shared experience and identity which matters to them. We think local engagement is going to be critical over the next 10-15 years.

That’s fascinating, that regional identity is so significant even in online spaces.

Diabetes is an interesting condition to explore in these scenarios because it’s like the canary in the coal mine. Type 2 diabetes, in particular, tells you the general population health, while Type 1 diabetes tells us about how society is dealing with a smaller group of people who have a condition which is eminently curable or preventable with the right level of research over the next 20 years. Our feeling is that within that timeframe, biotech and hard tech could both advance enough to make huge changes on that front. So diabetes becomes an interesting bellwether for social inequalities in each scenario, and for good sharing and rollout of the latest advances in healthcare.

Can you say more about tech?

By hard tech, I’m thinking about the devices and software and other technological resources which can help someone manage a condition, but also the wider scientific research from which those things arise. It’s a question of what knowledge we have, and how it is shared and used.

I know there are other issues beyond technology which also stood out to you.

In each scenario, I’m interested both in who is making the decisions on health policy and how important is health as an issue to politicians and policymakers – from welfare through to national security and everything in-between? 

The economics of each scenario also raise questions of how much money there is in the healthcare system for each version of 2048, how much money is in individuals’ pockets and what agency do people therefore have.  And what has happened to the food supply chain? 

It’s interesting, perhaps, to cross-reference our discussion with Luke Tay’s IMAJINE response on agrifood futures…

From a social perspective, we can think about the social determinants of health and how demographics impact on the prevalence of diabetes in each scenario, but also how people’s behaviours and values, and their notion of wellbeing, will have an impact. Agency is key: what space are people given for people to make decisions for themselves?

What did you learn from exploring SILICON SCAFFOLD?

In this scenario, those levers of power have shifted across to corporations, and substantive decisions about healthcare, beyond the absolute basics, will be in the hands of for-profit entities. Strategic decisions are likely to be market-led.

Cities thrive in SILICON SCAFFOLD, but the processed food supply chain will mean that there are still issues about poor quality nutrition with a great focus on processed foods. Prior to beginning our own scenarios work with Diabetes UK, I’d seen processed food as a consumer choice issue, but in fact processed food chains become a necessity as cities become more removed from the sites of agricultural production. Infrastructural necessities drive the provision of calorie-rich processed food which then is a key contributor to obesity; there’s a vicious circle there.

There is a big question on where public funding comes from.  Would corporates pay significant levels of tax in this  deregulated scenario.  Would a  nation-state fund welfare and high quality healthcare, if nation-states have survived at all in this world of corporate jurisdictions and digital citizenship. As inequality increases, and where you live becomes increasingly critical, an issue arises which is important across all scenarios: what degree of social mobility is there? Because the flipside of the coin is that place-based issues could potentially become a prison as well as a source of local support.

It also raises the question of whether health is seen as society’s problem or an individual’s problem; in this scenario, probably the latter. If you’ve got the agency and the opportunities to navigate this individualised healthcare system, and the freedom and resources to make choices, then there’s real potential to find a solution that fits you – but while some people will do very well out of this, finding perhaps better options than exist today, for others it’ll go less well. We might expect to see increasing stigma for people with type 2 diabetes and for those that have obesity or have overweight, and that stigma limits agency: the more guilt and shame increase, the less agency someone feels, and another vicious circle forms there. 

With the healthcare system privatised, we might expect to see research and service priorities to “follow the money”, but also the personal values of particular leaders and enterprises. In either case, it means that a small number of people are making big decisions for the rest of the population, even if some of those corporate leaders are altruistic. The fragmentation of this future Europe might also make the regulation of new drugs across jurisdictions very difficult. Corporates will follow the markets that are easiest to serve. And we might not see information being shared between rival organizations; research and technology breakthroughs might be missed because the interplay of ideas is restricted.

This issue of stigma and guilt, of social values, is fascinating precisely because we can’t just plot it on a graph projected into the future. It’s about the changing landscape of people’s priorities and feelings.

Health and wellbeing is a priority for many organizations, even at the basic level of the impact of sick days or poor wellbeing on productivity. I do wonder, given this notion of citizenship being entangled with employment or business relationships, whether some health and wellbeing conditions would be imposed as part of your employment agreement with one of these “corporate city-states” of SILICON SCAFFOLD. That could be about incentivising certain behaviours or penalising others.

It’s interesting, given how fragmented this future is, to wonder whether interest groups would form across the corporate boundaries. Would people with diabetes be able to come together across the lines of these new jurisdictions?

This is interesting, because we find that people will use our online forum to talk anonymously about their experiences with type 2 diabetes, where they won’t on social media, because of the stigma. In SILICON SCAFFOLD, a big question would be what kind of scaffolding existed for the social sector? Presumably it would be funded by the corporate players, but how democratic would that be? And would the scaffolding join up across different regions? We might be back in the world of Bournville: model communities designed by corporate philanthropists with the agenda of cultivating a loyal, healthy, industrious workforce. 

You also have me wondering whether the vestigial EU of this future, which focuses on energy and telecommunications, might also provide some of this “social scaffolding” in online spaces that cross jurisdictions.

Who would own these communities of interest, and who funds the platforms on which they meet? That’s key – and the question for some corporates might be how are those communities commoditised and to what end.

It might be that a number of corporates join forces to set up a “diabetes community” which would also help them to get data at a bigger scale.

That also plays into the issues around science sharing, which would be hampered.

IMAJINE scenarios
IMAJINE scenarios

PATCHWORK RAINBOW is the other fragmented future. What did you make of this?

Community resilience is potentially much greater in this scenario, but it’s so deeply localised. So much in this scenario depends on where you live. In this world, where the institutions aren’t there at the same strength, and healthcare is very much the responsibility of the community, you could expect to see myths propagating, with some quite unusual and improbable herbs and spices being promoted to treat your type 2 diabetes. In this future, if you want decent health tech, you want to be in a corner of the patchwork which has strong relations to the leading-edge tech powers in China. That might even mean the Chinese-sponsored North Africa of this scenario.

When we looked at deeply local, maven-led communities of the future, you could do quite well if you had good  resources and decent leadership, and the real plus point would be seeing people as whole people, not just a condition to be managed by the system. However, I’m not sure what proportion of the wider population would enjoy such benefits in this scenario. For the less shiny corners of the patchwork, there is limited access to health technology and resources – perhaps even problems getting insulin? That might even be an issue in SILICON SCAFFOLD’s privatised system, as in America, where the price of insulin means that many people can’t afford it.

Given that behavioural interventions can really head off or mitigate some of the most severe impacts of diabetes, it might be that some of these tight-knit, wellbeing-focussed communities in PATCHWORK RAINBOW are very good at caring for people before diabetes reaches a point where there are serious impacts on, say, eye health. A changed notion of what it means to “live well” might help people to live, move, and eat in ways which reduce the prevalence and impact of diabetes.

It’ll depend on the local leadership: those who have the vision, and the values, and ability to care for the population, to recognise welfare needs and intervene, rather than managing for other motives.

Given that this is a future where some of the worst-off Europeans might become economic migrants heading south across the Mediterranean, I also wonder how diabetes care and especially insulin supply work for people while they are on the move across borders and between jurisdictions.

The question of diabetes and migration doesn’t come up much in our work in the UK, but certainly refugees  who have type 1 diabetes or need insulin for type 2 diabetes do very poorly; access to regular healthcare and supplies, especially insulin which needs to be kept refrigerated, can be very difficult.

It might be interesting to look at healthcare provision in places like today’s migrant camps in places like Calais, or Australia’s offshore detention, and reflect on how that might inform the vision of migration in PATCHWORK RAINBOW.

The scenario raised for me the question of how we build trust in healthcare messaging, today and for the long term, so that if such a scenario as this plays out, we’ve already laid the channels of communication that can go across communities. PATCHWORK RAINBOW is in some ways a very wasteful scenario, despite having some bright points. Despite some very good utilisation of local assets in some areas, others will do less well, and things won’t operate at scale:there will be a lot of effort spent on reinventing wheels.

This use of the scenario interests me deeply. In Esther Peeren’s book THE SPECTRAL METAPHOR, she talks about the ghostly or spectral figures who get overlooked or marginalised in our society, which could include people stigmatised by certain conditions. One of our other health respondents helped us see that Esther’s insights were relevant to using scenarios in healthcare: who would be vulnerable in each future? How might we act to prevent or mitigate that vulnerability today? And, as you point out, in PATCHWORK RAINBOW, the vulnerability in fact stems from loss of trust.

In contemporary health communications, there’s a sense of needing to find relevance, that being the “trusted expert voice” is no longer enough. You need to give good, sound information, and be relevant too. We found a lot of people coming to us online at Diabetes UK during the pandemic, concerned about their potential vulnerability to this new virus, and one of our advantages as a relatively small organisation was that we could swiftly churn and adapt the messaging day by day, turning communications around overnight in a way that big institutions couldn’t do.The challenge of trust in science and in evidence is a very live one and was highlighted during the covid pandemic.

I like the definition of trust as “confidence that partners will not exploit each other’s vulnerability”. There’s something there that takes us beyond trust in expertise: it’s about mutual recognition of vulnerability, and the motive for action, whether it’s exploitative or not, the power dynamic, which seems highly relevant.

In this scenario, I think you’ll trust the local community who are close at hand. Seeing is believing. 

SILVER CITADEL feels like it’s at the opposite end of the spectrum. Everything is centralised, everything is measured, it’s all about GDP, and the central decisionmakers, supported by AI, are seeking to ensure all regions prosper equally.

Social conformity is massive in this scenario, which made me think that stigma would be huge. Data would be very good at predicting who would develop diabetes, particularly type 2, and this society might hold a general belief that having data would be sufficient to change the behaviours. It’s a very process-driven attitude: as if we were just algorithms ourselves, and if you just get the triggers right and change people’s habits, you’ll address the condition. There’s truth in that, but it’s not the totality of the truth.

Hard tech does very well in this scenario, which means type 1 diabetes would be very well managed; biotech developments and research might be more restricted, so the long-term prognosis on ending type 1 diabetes forever, or addressing type 2 diabetes via this route, would be less good.

Perhaps diabetes is seen as a problem when it’s a productivity issue or an economic burden, given the values of this scenario.

Depending almost on the ruthlessness of the machine intelligence that is part of policymaking in this scenario, you might see this kind of calculus: early-stage interventions in diabetes are very cheap and effective, the later stages of the condition are much more expensive. So the focus might be on shortening the expensive bit, through prevention, through getting people into remission as fast as possible, through pushing out the complications for as long as possible: the AI would be doing the sums to figure out the balance of what was most cost-effective, and it might involve addressing the question of whether the machine thought early mortality reduced cost. So there would be a big ethical component into how these calculations were being made.

It makes me think of the IMAJINE respondent Caroline Baylon’s comment:

We don’t necessarily understand how AI systems come to the conclusions that they do – that is, how they ‘think’ – and their outputs can surprise us. What if the AI system decided to allocate more funds to regions with fewer immigrants, deeming these regions to be more deserving of funds? Or to ones with a larger male population? AI algorithms learn to make predictions based on patterns that they observe in the datasets they are trained on, so they can replicate biases that are present in the real world. This includes displaying racist and sexist tendencies.

We already know that AI operations are often flawed by the skewed population data that goes in, and then distrust can arise as those flaws play out or compound. Especially data from multiethnic groups or well balanced gender datais not necessarily included appropriately or coded properly, so therefore the AI decision that comes out does not reflect everyone’s needs.

It reminds me of the issue we saw with the scenarios for the future of Norwegian schools, that with a heavily surveilled system, it was conditions like Munchusen’s Syndrome by Proxy, so-called factitious disorders, which confused the algorithm. Again, incalculable social factors like trust and deceit played a part in shaping the future automation of health.

I think it goes back to the question of how much agency people have. Having a long term condition can make people feel depressed, not just because it’s so hard living with it, but physiologically as well. If you feel that your condition is being managed well, but only because you’re trapped into following a certain routine, your wellbeing will be poor. We had a global tech scenario at one point, in which a character was forbidden to eat chocolate on a certain day by her health tech, which she had to obey for the sake of her health premiums. That resonated across everybody who ever looked at the scenario with us! That loss of power, the ability to choose in a particular moment to eat a particular thing, was deeply troubling. You might be physically well, but psychologically burdened.

Now we come to GREEN GUARDIAN, with its thriving rural areas –

Elysium!  The focus on wellness and on going back to the land, for those who can, will bring better diets and potentially more physical activity with rich dividends in better health and the prevention of diabetes, many cancers and heart disease.  In this world, with its values of frugality and looking after the natural world, the corporate food sector will perhaps be incentivised to promote good health.  

However in the more deprived urban areas there will be more reliance perhaps on farmers markets and the kindness of rural communities to bring in fresh produce and to combat processed food supply chains.  The challenge will be how to make sure that these supplies are at a price that people living with inequalities can afford. 

In this postcapitalist world where wellbeing is all, this world of ecofrugality and jurisdiction by “bioregions”, and disdain for waste, what does that imply for the ways in which people with diabetes are cared for?

This is potentially a world where the incidence of type 2 diabetes diminishes – especially in rural areas.  You might have communities where diabetes is less likely to arise, because of the way people live in GREEN GUARDIAN.  Will cities continue to be obesogenic environments where it is a constant challenge to stay at a healthy weight.  And if so, will people continue to be vilified for having overweight or obesity especially in a world where over consumption is frowned up. In which case diabetes care and research and treatment will continue to be under resourced leading to major health challenges for individuals.  Or will there be genuine compassion and understanding and a collective move across society to help and to understand the role of the environment and to find ways to cure and prevent type 1 and type 2 diabetes. 

Thanks to Colette for her time and her insights. You can read the full scenario document online here, and explore another health-focussed response to the IMAJINE scenarios in Gail Carson’s commentary on the future of infectious disease in each scenario.