In order to meaningfully transform our relationship with death and dying – to make it more human-centred, socially-connected and interconnected – we need to take a more relational approach to end of life that encompasses the wider, non-medical ecosystems of care. In other words, we need to take a systemic approach to end of life care.
The general medical journal The Lancet, holds a Commission every few years on a specific topic. For 2019, it is dedicated to The Value of Death. The Lancet Commission on the Value of Death will have a global focus and concentrate on four issues: the medicalisation and possible demedicalisation of death; how people die and think of death in different countries and cultures; whether the battle with death is beggaring us financially and spiritually; and the utility of attempts to tame death, including advance decisions, assisted suicide, palliative care, the concept of a good death, and the pursuit of immortality.
I am very proud to have contributed a short article about the role design can play in transforming our relationship with dying, death and loss. You can read it here.
I'm delighted to join my friend and colleague, Marco Ferrari in his new research unit at the Royal College of Art. I am going to deliver some lectures on the urgent and necessary topic of Climate Grief. These lectures will be situated inside a thorough investigation into the politics of the atmosphere. This marks a new period of research for me, looking at how palliative care and end-of-life practices, indigenous cultures and emerging ways of being can transform and scale to affect the collective experience of communities and nations as we slowly begin to reckon with the effects of climate breakdown.
The unit will look at the atmosphere as its main field of investigation. As the domain where the different vectors of the current climate crisis meet and interplay, and where conflicts around its policing are emerging, the atmosphere also produces multiple localities where these transformations can be observed—and sites of intervention that can be imagined. Far from being understood in all of its complexity, the atmosphere continues to elude our ability to model its dynamics or to compute future scenarios. In an attempt to question and drift from the current understanding of planetary-scale ecosystems, this studio will aim to produce alternative cartographies of the atmosphere and in so doing, produce a different blueprint for architectural mediation.
You can more about the research unit, led by Marco Ferrari & Elise Hunchuck with Jingru (Cyan) Cheng here.
This Autumn, I was invited to join Zinc VC's third mission, as Fellow. Zinc builds new tech companies that solve the developed world’s toughest social issues. I am going to be helping Founders as an expert advisor to build their new business, creating new solutions which specifically meet the needs of the ‘oldest old’, maximising their dignity, comfort and stability in their final years of life.
Over the past four years, at the Helix Centre I've helped develop or support new ways to deliver better end-of-life care such as the emergency care planning initiative ReSPECT or our advance care planning platform, Amber. From this work, I've learned some important things: the dying process really is a holistic one and that death should be a predominantly social, rather than clinical, experience. I've also felt - as a group of designers, clinicians, technologists and researchers working in this area - that we have come up against the limits of some of our methodologies. I want to work towards a more holistic, systemic type of care.
So we have been putting together our latest findings, prototypes and headline conclusions to describe where I believe we should be focused on, going forward. We recently published three articles that describe what we've done. The first, an introduction to contextualise our thinking, sets the scene.
Our second article is about our recent research and prototyping work to provide better psychosocial care for patients living with a life-limiting illness and professionals experiencing burnout, through mindfulness for palliative care.
The third article reveals the research we have done to understand how to normalise and make equitable some important clinical end-of-life care at home, delivered by supporting laycarers that utilises both policy and design, in the use of injectable medications.
This work both marks the close of one phase of long-term work, and establishes initial projects for a new phase that will continue over the next few years. These two projects are one of many that I intend to develop at the Helix Centre and the wider Institute of Global Health Innovation at Imperial College London.
The articles were co-written by myself and Imogen Eastwood, our clinical nurse specialist in palliative care.
'Chiara' is a short design fiction film that presents a near-future service that utilises contemporary technologies to support families caring for a child with life-limiting conditions. We believe technology - such as intelligent support assistants - can play an important part in providing care and support to geographically and socially isolated families across Europe.
Chiara is the first prototype we have developed at the Helix Centre, as part of our work with Fondazione Isabella Seragnoli, Dot Dot Dot and Renzo Piano Building Workshop to create one of the the most advanced children's hospice in the world. Throughout 2019 and 2020, we will continue to develop more prototypes that tangibly describe innovative new products, services and experiences that support children, families and healthcare professionals.
The film was written by myself and Greta Castellana. It was shot and edited by Cloud Film. With generous support from various families in collaboration with Together for Short Lives.
In February 2019, I spoke at the annual Interaction Design Association (IxDA) conference, held in Seattle, at a session entitled 'Designing Living, Designing Dying'. In this 30 minute talk, I discuss my experiences spending time with people at the end of their life, and how those insights have enabled us to design services - like Amber Care Plans - to support people in engaging with and planning for the end of their life. I conclude by describing how - as designers - we have to develop new methodologies to support these complex, holistic human experiences, to really begin to tackle the systemic problems we face at the end.
Additionally, there was a panel discussion with my fellow speakers, where we unpacked some of the issues raised in our talks, and elaborated on some of the ideas with the audience.
Every two years Nesta and The Observer showcase 50 radical individuals and organisations changing the UK for the better. I'm incredibly proud to be one of this year's 50 Radicals.
I believe that design can make radical improvements to the ways we live and die and I'm really excited that Nesta and The Observer supports this belief.
I'm doing this work across institutions, companies and places. As a designer at the Helix Centre within Imperial College London, as a co-founder at Digital Care Planning and Humane Engineering, and as founder of Being and Dying. I'm not doing this alone. I work with many talented and dedicated people across the UK and Europe to change the way we live and die, for the better.
New Radicals is a search led by Nesta, the innovation foundation, and The Observer to find the top people, projects and organisations offering innovative ways to tackle social challenges. It was launched in 2012 and runs every 2 years.
The Helix Centre is featured in the Harvard Business Review as one the world's leading healthcare innovation centres, along with the Center for Innovation at the Mayo Clinic, and the Consortium for Medical Technologies at Massachusetts General Hospital. Our work in end-of-life care is specifically described as "an embodiment of human-centered design". You can read the full article here.
I co-founded Digital Care Planning (DCP) with Matthew Harrison in 2017. It is the first spin-out venture from the Helix Centre, and its first product, Amber Care Planning is now available.
Our mission is to encourage more advance care planning so that healthcare can be aligned with patients’ wishes.
An Advance Care Plan eases the burden of decision making for your loved ones. It is a written guide spelling out your likes, dislikes, wishes, and the treatments you want to refuse or rituals you want followed - whether during illness or at the end of life. They are also known as Living Wills or Advance Directives, and can be referred to if you become too ill to communicate.
Everyone should have one.
You can create an advance care plan on the website in less than 30 minutes. It’s completely free. You can share your plan at the touch of a button, discuss it, and then get on with life knowing your wishes will be taken care of. You can update your plan as often as you want. It’s quick, easy and free to do.
Digital Care Planning is supported by SBRI Healthcare, an NHS England initiative.
The experience of dying is a deeply human one. It is a uniquely emotional, psychological, spiritual - even mystical - time that everyone will go through. Death will always be a terrifying prospect, but good end-of-life care can make a huge amount of difference.
At the Helix Centre, we believe that to make radical improvements to the holistic care of the dying person, there is a greater need to support dying people with their psychosocial – spiritual, emotional and psychological – needs. It is vital to not only serve those person’s needs, but broaden the abilities of those caring for them to support and attend to them, both professional and non-professionals.
I am leading a new project at the Helix Centre that aims to address and improve the psychosocial care needs of people at the end of their life. By combining human-centred design, relationship-based care models, evaluating and implementing existing and emerging technologies with evidence-based research, we can transform the experience for patients, their loved ones and professionals. We think this will help improve clinical outcomes and effectiveness of end-of-life care services, particularly for hospices.
For more information visit helixcentre.com
After a year of lectures and keynotes, it was a real privilege to speak at the inaugural End Well Symposium in San Francisco in December.
End Well is a first of its kind gathering of design, tech, health care and activist communities with the goal of generating human-centered, interdisciplinary innovation for the end of life experience.
The single-day symposium's fast-paced agenda of provocative minds and empathic priorities provided a unique immersion in the cultural, clinical and systems issues and opportunities relating to the end of life experience – and it marks the beginning of a movement to actively change our relationship to living and dying.
I will continue to contribute to the symposium as an advisor alongside other leading practitioners such as BJ Miller, Lucy Kalanithi and Paul Bennett from IDEO. You can read a review of the symposium here.
This summer, Humane Engineering launched a brand new version of Cove. It represents the biggest update since launching in November 2015.
Cove was featured in The Guardian, as part of World Mental Health Day in October, and named as one of 'the best mental health apps'.
With Cove, you can capture your mood or express how you feel by making music and storing it in a personal journal. Cove has been designed as a tool for young people who have experienced bereavement or loss, but adults may find it equally useful to express and capture a mood or emotion. We are using an evidence-based, human-centred design approach to build an app which encourages self-expression during difficult periods of life, which we believe can improve emotional and mental health over time.
You can download Cove on the iOS app store for free.
In April 2017, Cove was added, amongst 20 other health apps, to the new NHS app library. In partnership with NHS England and mHabitat as part of the Digital Development Lab, we have received funding to evaluate Cove for approval by the NHS.
We have partnered with clinicians from Imperial College London and the charity Child Bereavement UK to evaluate Cove as part of the Digital Development Lab for NHS England. By adding Cove as a digital support tool for young people experiencing bereavement, we believe we can help support young people to cope better with their experiences. In conjunction with professional therapy, is the goal of Cove to empower young people to self-express and grow from their experiences.
Read more about our announcement on the Humane Engineering website.
I designed the first major monograph on Turner Prize–nominated Glasgow artist Jim Lambie, for Skira Rizzoli with The Modern Institute and Sadie Coles. It features contributions by John Giorno, Suzanne Cotter, Daniel Baumann and Sophie Woodward.
This long-awaited volume surveys the career of Glasgow-based contemporary sculptor Jim Lambie. From his distinctive floor works, striped from wall to wall with vibrant electrical tape, to his paint-soaked mattresses, Lambie adroitly sculpts humor and pathos from the clutter of modern life. Working with items immediately at hand, as well as those sourced in secondhand and hardware stores, he resurrects record decks, speakers, clothing, accessories, doors, and mirrors to form sculptural elements in larger compositions.
Lambie prioritizes sensory pleasure over intellectual response. He selects materials that are familiar and have a strong personal resonance, so that they offer a way into the work as well as a springboard to a psychological space beyond. This volume not only serves as a definitive mid-career survey but also as a major reframing of the artist’s work. Lambie’s practice has long been understood through the lens of punk and rock music, a frequent theme of his works’ titles. Here the artist and new essays instead trace his approach to the rich material histories he mines and the scrappy, resourceful spirit of his hometown, Glasgow.
You can buy the book from Walther König books.
2017 marks a busy year for my work around end-of-life care. I'll be talking more about the work we do at the Helix Centre and my own research throughout the year at more conferences and symposia.
On the 7th February I was speaking in conversation with Cassie Robinson – who is director of strategy and research at Doteveryone amongst other things – at Ctrl Group, who hold regular m-health meet ups. You can read more about the event here.
With more people are beginning to engage with the reality of death and dying. In a 2013 Age UK survey 70% of people questioned were comfortable with talking about death. Yet less than one third have discussed their wishes about their end of life with someone else.
Design has a role to play in helping people to express their needs and wants for palliative care, and also in facilitating the delivery of these products and services. In this talk, Cassie and I discuss and explain our experiences in engaging with the people, organisations and systems involved in end of life care, and the challenges and opportunities they faced when designing products and services for these contexts.
Published this summer, is the tenth book in the Common Intellectual series for Copy Press: Ha-Ha Crystal by Chris Fite-Wassilak.
Written with ease and adventure, the essays within Ha-Ha Crystal have the reader moving from tetrahedrons, through comic books to the architecture of John Portman and the films of Jacques Tati. As a host of things are put into contact with each other, thought takes shape and becomes crystalline.
You can buy Ha-Ha Crystal and the rest of the Copy Press books from all good bookstores including Foyles, Hive and Waterstones.
On June 24th 2016, we opened an exhibition presenting the final work of students on the MA Information Design Lab led by myself and Marco Ferrari.
The lab was established as an ongoing, real-time data-visualisation attempt to track and explain the global financial crisis that many analysts predicted for 2016. Its purpose was to better understand the broader network of causes and implications in which every financial turmoil unfolds, providing context to economic reports, and looking at the socio-political framework of news stories. From a design perspective, the intention was to develop new ways for visualizing financial news, in order to move from the rather bi-dimensional language of bar and pie charts, into a richer territory made of maps, cartograms, illustrations, diagrams.
Twenty students were divided into seven groups, each of them covering a specific topic. They closely followed the news, in order to understand these issues through investigating patterns, data, forecasts and reports, so they could track the shifts in the financial global landscape from the perspective of these particular areas.
Marco Ferrari and I opened our 3rd Information Design Lab at the Università Iuav di Venezia in Italy this February 2016. Given the increasing importance of economical data and the financial landscape over our lives—and under the influence of the looming crisis that may happen later this year—we decided to set up the lab as an ongoing, real-time data-visualisation workshop with the ambition to track and explain through this evolving crisis. The students will be divided into ten groups, each of them covering a specific and relevant sub-topic (i.e.: “Real estate”, “US student loan debt”, “Insurance”, “China slowdown”...) Their task will be to understand these issues and track the shifts in the financial global landscape from the perspective of these particular areas. They will produce every week a bulletin, using data to progressively monitor the news as they evolve. At the end, every group will design an additional special report on their specific topic, expanding the knowledge acquired during the course.
This November, we're announcing the release of Cove!
Cove is Humane Engineering’s first product, a music-making app designed to help young people express themselves in a meaningful way. It was created to support young people through life’s most difficult moments, and promote music as a unique form of self-expression.
Very happy to announce I've joined the team at the Helix Centre, to work on their end-of-life projects. The Helix Centre is a collaboration between the Imperial College London and the Royal College of Art, and is a unique design studio situated inside St Mary's Hospital in London, that responds quickly to complex healthcare issues, turning ideas into prototype products, processes and services.
Read more at helixcentre.com
I have co-founded a new company, Humane Engineering with Alex Rothera. We were successful in our application for funding, and have been accepted by the Bethnal Green Ventures to develop our research project Flutter, into a commercial product. It will be called Cove, and it will be a music-maker app to help people - in particular adolescents - who have experienced grief or loss, to express themselves through music. It will be released to the public in September 2015 for iOS.
You can read more about the company at humaneengineering.com
The 2014 Museum of Future Government Services has been named professional winner of the Speculative Concepts category in the 2015 Core 77 Design Awards.
The jury noted, "This was a unanimous decision. This goes back to the idea of projects that are speculative and do deal with the imagination, but also have real world implications. This to us was a super exciting kind of avenue for where speculative design can really make an impact on the world."
I led the art direction and visual design for Fabrica, working closely with experience designers Tellart.
To read more about the project, check out the Design Award website here.
The 2015 Museum of Future Government Services, a vision of how advanced technologies can transform government services for the better, is a three day immersive experience featured at the Government Summit in Dubai. From augmented reality to robots and artificial intelligence, the Museum is meant to inspire and educate, highlighting a positive vision of a future that includes governments and society working together to create a more hopeful world.
The 2015 Museum of Future Government Services is a project by the Prime Minister’s Office of the UAE . I led the art direction for the exhibition at Tellart, working with an international team of top design studios including Specular, SOFTlab, Bompas & Parr, Octo, Idee und Klang, and Future Cities Catapult. The onsite build and installation was done by Tellart in collaboration with Publicis Live, Neumann & Müller, and Projex.