[Cause Exploration Prizes] Longer, healthier lives: public engagement around ageing and health

This essay was submitted to Open Philanthropy’s Cause Exploration Prizes contest.

If you’re seeing this in summer 2022, we’ll be posting many submissions in a short period. If you want to stop seeing them so often, apply a filter for the appropriate tag!

Major sources of uncertainty

My major sources of uncertainty are the following:

How to evaluate the outcomes and value of this work – Impact is very complicated, even more so when it involves human behaviour, network effects, culture and societies.
How to disentangle within this proposal discussion of research on ageing from the meta-discussion of public interest and engagement with research, and the future fruits of that research, in the form of treatments and interventions which mostly don’t yet exist.
How well I’ve been able to present this tangled web in this proposal, in the 48 hours I’ve been working on it, in the gaps between work and family commitments.

Summary and background to this proposal

I have over 20 years’ experience leading communications in research institutes, universities, NGOs and charities, with a focus on science, health and development. In my current role at the UK’s National Institute for Health and Care Research, I work with health researchers and agencies such as the World Health Organization, NGOs and other funders, especially in low-income settings. I previously worked at HelpAge International, exploring new solutions for ageing populations and communities, especially in low-income settings.

I am passionate about helping people worldwide enjoy longer and healthier lives, and over the past few months I have been developing this idea for wider public engagement around ageing and health, reframing medical approaches to the diseases of ageing, and facilitating inter-generational dialogues about healthy ageing.

Over the past few decades, despite pessimistic neo-malthusian predictions, advances in food production, material living standards, healthcare and public health have greatly reduced early death from infectious diseases, famine, violence and accidents. Most of the world’s population (which has more than doubled to nearly 8 billion) are living much longer, and mostly healthier lives.

Current advances in science and medicine of ageing (bio-gerontology or ‘geroscience’), have huge implications for our contemporary societies, and (dare I say) for the long-term future of humanity.

Historically, there has been a lot of hype and speculation around this field, with bold claims for the prospect of greatly extended human lifespans based on work in cells or model organisms such as nematodes and mice. Heather Youngs in the 2017 OP medium investigation on the mechanisms of aging raised questions around the applicability of basic research, but also noted “several years of healthy life extension could plausibly be made in the next 10-20 years in some areas, such as senescent cell removal”.

The field has moved on even over the past five years, with new findings published, and promising treatments currently in development. With advances in genomics and computing power, funding for clinical trials and translational medicine, we may expect the pace of discovery to accelerate.

I believe these developments are too important to leave to scientists, doctors and policy geeks like me, let alone to pharma, healthcare and tech industry players. So as not to exacerbate existing inequalities in health and knowledge, and to contribute to policies that promote longer, healthier lives for all, they need to be part of wider public and political debates.

The Covid-19 pandemic has sparked renewed public and mainstream media interest in health literacy, as well as the power of rumour and misinformation. In my own field of global health, there is a renewed focus on international cooperation and communication to promote health-seeking behaviour by individuals and communities.

I am currently writing a book, provisionally entitled ‘Staying Alive: a survival guide for 21st Century humans’ to communicate the latest research and advances in ageing science. Leavened with references to sci-fi and popular culture, and touching on X-risk and AI as well as health and bioscience, I want it to be accessible and engaging, and to explore big questions including:

How and why do people die?
How can we live healthier and longer?
What might the future hold in ‘geroscience’ and medicine?
Are greatly increased lifespans possible or desirable?
How can we as a society survive and thrive in the 21^st Century?

I am also conducting live and video dialogues with researchers working on the most interesting technical problems. I intend to feature 8-10 of these in the book, and so far have interviewed:

Prof. Consuelo Borrás and her team at the University of Valencia, In March 2022, New Scientist reported their findings on the role of extracellular vesicles transported in the blood in slowing ageing in mice. I am visiting them on 5 September.
Prof. Tom Yates and his team at University of Leicester, on a causal link between physical exercise and DNA telomere length in middle age, preprint widely reported in March and paper to be published shortly. I am visiting them on 14 September.
Dr Alex Cagan at Wellcome Sanger Institute on somatic mutation rates and lifespan across mammals (published April 2022)

I am planning to interview:

Prof. Irina Conboy at the University of California, Berkeley, one of the pioneers of studies of ‘young blood’ in mice, who has received over $5 million OP funding since 2017 to support research on the basic biology of ageing-related diseases.
Prof. Judith Campisi of the Buck Institute, a pioneer of research on cellular senescence, one of the key biological processes implicated in aging.
Prof. Vera Gorbunova, University of Rochester, New York on genetic factors associated with people over 100 in the New England Centenarian Study, running since 1995.
Prof. Wolf Reik, Cambridge, on rejuvenation of naturally aged tissues by genomic reprogramming (published March 2022)

I am experimenting with ways of engaging people through blogs, social media, networks, live events and festivals. In March, I launched a blog to share thinking with interested communities.

I am also engaging with young and older science communicators to develop more engaging and accessible presentations for different audiences, interview people in various settings about their hopes for the future, and inter-generational dialogue about ageing and health.

Over the next few months, I will present work in progress at the British Science Festival 13-17 Sep, Reinventing Science Communication Conference in Ljubljana, 13-14 Oct, and I hope the World Conference of Science Journalists in Medellin, March 2023.

Importance

How many individuals are affected by this problem, and by how much?

If we consider the problem as the diseases of ageing, ‘many billions’ and ‘a huge amount’ would seem to be reasonable answers. Everyone who survives early adulthood is affected by ageing, and most are at risk of at least one of the diseases of ageing. According to the WHO, non-communicable diseases (NCDs), including heart disease, cancers, diabetes, arthritis, dementia and neurodegenerative diseases, kill 41 million people each year, equivalent to 71% of all deaths globally.

Many more people, an estimated half of all over 65 year olds, live with chronic and multiple long-term conditions, which limit quality of life and impact on their families, carers and health systems. As populations age, these burdens may disproportionately affect future generations.

Tractability

How can a philanthropic funder help to make progress on this problem? Can you estimate what impact per dollar you would expect for different types of interventions?

There is emerging evidence that most of the diseases of ageing may be traceable to a few basic cellular mechanisms, which are not yet well understood.

In August 2017, the Open Philanthropy Project recommended a grant of $5 million over five years to support research on the basic biology of ageing-related diseases and impairments, led by Irina Conboy at UC, Berkeley, and to promote multi-disciplinary collaborations in the arena of ageing research. It would be interesting to see the outcomes of this grant.

My proposal is about engaging wider publics, and empowering individuals, communities and societies to make decisions that improve their own health through evidence-based interventions such as improved diet, healthy physical activity and access to appropriate treatment as it might become available in future.

Although this is a slightly different framing, it is consistent with a systems approach to public health. I believe they are likely to be at least as cost-effective as traditional/modern medical research interventions. The theory of change involved is relatively simple:

I’m not so naïve as to think that greater knowledge always leads to more agency, better decisions and outcomes, but on average, I believe that this is the case, and this is well borne out in development and human history. With scientific literacy comes better decision-making capabilities and easier navigation through life’s everyday challenges, including making healthy choices for individuals and families.

In addition, there is evidence for what might be termed the ‘positive psychological’ effects of increased scientific literacy, by which knowledge is empowering not merely in an instrumental way, but through enhancing understanding, agency and self-efficacy. There is also evidence that scientific literacy helps protect people from rumours and misinformation about health, that are prevalent particularly during pandemics and other emergencies. This is education for public health as an absolute public good.

I can’t currently estimate what impact per dollar you would expect for different types of interventions. I am not an expert in evaluation of cost-effectiveness for public education or engagement programmes around behaviour change. I have worked with the UK government’s Behavioural Insights Team—now an independent consultancy.

Neglectedness

Who else is working on this problem? Why are other funders not pursuing the strategies you think are most promising?

There is no shortage of funding for research and treatment for the diseases of ageing. Heart disease, various cancers, diabetes, arthritis, dementia and neurodegenerative diseases are the focus of billions of dollars of disease-specific medical research, much of which may not be well spent. However, until recently, there has been relatively little funding is available for basic science on the biological drivers of ageing, and still less on pubic engagement.

Heather Youngs in the 2017 OP medium investigation on the mechanisms of aging noted some of the US sources of funding for ageing research, including:

NIH (with $177 million per year tagged as “aging biology” in 2015)
Buck Institute ($35 million total annual budget in 2014)
Glenn Foundation ($11 million total in grants in 2014)
SENS Foundation ($1.5 million in grants and $5 million in total expenses in 2014)
American Federation for Aging Research ($7.7 million in grants and $10 million in total expenses in 2015)

This is likely to be significantly higher now, despite the distractions of Covid-19. In 2022, NIH’s National Institute of Aging had a budget of $4 billion, this is mostly earmarked for Alzheimer’s disease research, which is currently embroiled in controversy. Around 10% of this, $400 million, went to the Division of Aging Biology (DAB), which supports research to determine the basic biochemical and genetic mechanisms underlying the processes of aging at the cell, tissue, and organ levels and the ways these are communicated among cells and tissues of the body.

In addition to the funding above for basic research, there is funding directed towards radical lifespan extension, such as the Life Extension Advocacy Organization (LEAF), and the Methuselah Foundation. A number of high-profile start-ups and companies are working in this area, including: Calico, Human Longevity Inc., Unity Biotechnology and Alkahest. There are some others outside the USA.

In Europe, most funding for ageing science comes from public (government) sources and funding bodies, and well-endowed private funders like the Wellcome Trust.

Although the field of research and innovation is hardly neglected, there is very little funding I am aware of for public engagement in the area.

In the UK, Wellcome has some resources for public engagement, and together with UK Research & Innovation funds the National Co-ordinating Centre for Public Engagement to help universities engage with public audiences. Groups such as the Science Media Centre and Sense About Science work with the media, parliament and industry to promote good practice.

There are diverse groups and networks engaged in similar activities globally. I work with WHO, the ‘Health Information for All’ network and colleagues at NIHR on our strategy for community engagement and involvement in global health research and Mesh, an online network for people working in community engagement with global health research supported by Wellcome and NIHR. I believe I am well placed to commission or advise on further research on this as required.

I think this is important, given the significant bias in reporting towards the hyperbolic claims and predictions made by proponents of radical longevity, such as Aubrey de Grey and David Sinclair. While this sparks public interest, it also tends to undermine trust in the science.

There is a large and persistent public appetite for ‘miracle’ cures, diets and supplements, for which there is little evidence. Some of the best-selling books in this area are not the most reliable. Authors and journalists often cherry-pick results and quote the latest findings out of context, which can breed popular cynicism about health research.

Some attempts are being made to monitor and evaluate in areas such as attitudes and acceptance of vaccines in different countries.

Example grants

Discuss a couple of example grants that could be made to address this problem. These could involve real or hypothetical grantees. For example, “I’d fund grantee X to do Y” or “I’d want to fund Y if I could find a grantee to carry it out.”

Health and science literacy, like the future, are not evenly or equitably distributed. Ageing and death are sensitive topics in many communities and engagement will need careful consideration, but I think with the right framing, this could be a really exciting and collaborative process, with some great outcomes.

The prospect of longer, healthier lives is exciting and inspiring. It means questioning the traditional education – work – retirement life course, and thinking anew about many aspects of society. I am looking for ways to engage a very wide public audience in this conversation and even a modest grant (£20-50,000 or US$30-70,000) would I believe have a high impact.

A pilot programme of $1 million evaluated over 4-5 years would provide evidence for what interventions work in what settings and why, enabling decisions to be made in scaling up. There are a number of freelance public engagement and science communications professionals working in this space, who could be encouraged to apply for grants on a competitive proposal basis.

As an example, this is what I hope to achieve with a £10,000 grant from the Association of British Science Writers over the next 6 months.

I propose to recruit a network / team of student journalists and engagement practitioners as comms interns and community animators to facilitate engagement with communities, groups and media, and deliver collaborative, participative activities around health and longevity under the ‘Staying Alive’ banner.

I would aim for diversity in terms of age, gender, ethnicity, nationality, religion and community background. I see this an opportunity to develop and foster new talent, providing a safe space and a structure for experiment and participative content creation. Engagement methods might include a mix of media workshops, IRL and online dialogues with researchers, young and older people, sci-art, storytelling, etc. I would also propose teaming up with groups such as Age UK’s Ageing Well groups.

Themes might include:

100 not out – Lessons from super-centenarians
Why we die—Evolution of ageing
Die another day? Modern medicine and its discontents
Ageing societies and silver tsunamis
Young blood, old guts and rejuvenated rodents
Diet, exercise and fun – simple things that we know work
Genomic revolutions and regenerative medicine
Avoiding AI-mageddon and other extinction risks
Beyond human? Androids, avatars & algorithms
Elf and wellbeing—how can we live better?

July-Sep 22	Continue to work up material and discuss with communities of interest including artists and sci-comms folk – plan and deliver engagement activities at British Science Festival and other events (at own/zero cost).
Oct 22	Present and network at Reinventing Science Communication Conference in Ljubljana Recruit and select diverse UK student journalists and engagement practitioners as comms interns and community animators - to facilitate engagement and devise activities in partnership with communities / groups / media Commission photo-stories, video and themed narrative resource packs, including professionally produced podcast ‘Staying Alive’ Develop presentation for World Conference of Science Journalists (WCSJ) March 2023
Nov-Dec 22	Film and edit photo-stories, video and themed narrative resource packs, record podcast Prepare journalists’ workshop with SMC & ABSW Hold facilitated participatory workshops around the UK – like the ‘Death Café’ a couple of years ago in Lewisham, only more upbeat
Jan – Feb 23	Deliver workshops and pilot projects in community settings Convene a day-long workshop at a science museum or centre (e.g. Wellcome Collection) to share learning Hold briefing for UK media with ABSW & SMC Prepare final draft of book & other materials for publication
March 23	Publish materials, videos etc online through selected media partner(s) Present at World Conference of Science Journalists (WCSJ) March 27-31, 2022 Evaluate, celebrate and plan next steps

I have a well-remunerated job so wouldn’t expect any of the money to pay for my time. I would instead use it to recruit a network of ‘community animators’ – paid media and engagement interns from diverse communities around the country.

I will invite ABSW members to join a selection panel and aim for diversity in terms of age, gender, ethnicity, UK region, religion and community background. I very much see this an opportunity to develop and foster new media talent, providing a safe space and a structure for experiment and participative content creation.

We envisage part-time contracts approx. 1 day per week flexible for approx. 20 weeks November to March. The team might have monthly online meetings to share experiences and team up on interesting projects. So:

6 x interns each doing 20 days @ £50 per day = £1,000 each total £6,000
Fund for material and travel expenses, workshops, refreshments, displays and incidental costs e.g. additional video editing, software licences, etc £2,000
Conference expenses and travel (e.g. WCSJ23) £2,000

We will have a small steering group to ensure accountability and value, and I expect there’s a lot that can be begged and borrowed. I also propose to crowdsource additional funding if needed for particular exciting projects, or raise funds from other sources, such as Wellcome.

Once the book is published later in 2023, we will have an income stream that can pay for interesting projects that develop out of this process. Of course, I am hoping it becomes a global best-seller, but even if it enjoys modest sales, there will be interesting opportunities for promotion and for advancement of the participants in the original project. I can’t yet tell what these might be.

Provide a list of questions that you think need to be investigated, but which you haven’t had the time or space to discuss in your submission.

Too many questions! Here are some that spring to mind:

How can we develop robust evaluation tools and frameworks for what is a very complex and distributed set of interventions?
How can we compare the apples and pears of individual / community level interventsions (nutrition and physical activity) with the planet-sized superfruit of AI-related x-risk, for example?
How can we define our core objectives ‘raise awareness of literacy around epigenetics of ageing’ among group Y and benchmark them across populations?
With what probability and on what timescale could success be achieved?