How we’re doing it: three key phases

The Marie Curie Design to Care programme has three key phases: a research and design phase to develop the new care framework; a pilot and evaluation phase to test and evaluate the framework; and a dissemination phase to enable us to share this framework widely.

Phase one: research and design (2017 - 2019)

In phase one of the programme, we’re collaborating with researchers from the Primary Care Unit and the Engineering Design Centre at the University of Cambridge, and the Art and Design Research Centre at Sheffield Hallam University.

Both universities have a strong track record in experience-based co-design, systems designs, ethnography, critical artefact methodologies, and palliative and end of life care – from both clinical and social science perspectives.

Our methodology

To design the care framework, the researchers we’re working with are using proven design methodologies to understand the different factors that can impact on a person’s experience of palliative and end of life care.

• Using a systems approach, the researchers are building a detailed picture on how services and people are linked together as part of a large and complex system. The researchers aim to understand how the current models of palliative and end of life care work, what the key challenges are and what improvements we can make to create a safe, effective and affordable system of care.

• Experience-based co-design is another methodology the researchers are using to help them understand people’s needs and experiences of care, and explore the wider cultural context of death and dying. Through a series of workshops, interviews and focus groups held in local communities, the researchers are engaging with a wide range of people so that together, they can identify the problems and any potential solutions using the process of co-design.

Understanding the challenges

Researchers working on the programme are running focus groups and workshops involving people with experience of using or delivering services, and with the wider public. By doing so, they aim to understand what aspects of palliative and end of life care do and don’t work now, and how things could be improved for the future.

The researchers are also looking at existing data and published studies to identify the different factors that can impact on a person’s experience of care in their last days, weeks or months of life – factors such as their illnesses, place of care and social circumstances, and the community they live in.

As well as the direct health and social care aspects of end of life care, the researchers are exploring the wider aspects of death and dying, to understand how we think about the process as a society, how it’s relevant to everyone and what we can do to make the experience better.

Developing the solutions

The researchers will be taking a creative approach to designing potential new solutions to the challenges they’ve identified.

Nothing will be out of scope initially, as the researchers will explore all options for change and improvement, and test what may work well in ‘real-life’ settings. They’ll then collate these practical solutions as part of our programme’s innovative approach to palliative and end of life care for the future.  

Phase two: pilot and evaluation phase

Following the research and design phase, we’ll pilot the programme’s new approach to palliative and end of life care in a number of areas and settings so we can test it for feasibility, effectiveness and affordability.

We’ll also commission an independent evaluation on how the approach works in practice, so we can make improvements where they’re needed.

Phase three: dissemination phase

Once evaluated, our programme’s approach to palliative and end of life care will be available, free of charge, to any care providers and commissioners in the UK.

We’ll also share what we’ve learned from the development and evaluation of the programme’s approach with policymakers and the NHS.

Our aim is for our programme’s approach to be used as widely as possible by others to deliver excellent palliative and end of life care in their local areas.