I am delighted to be a co-author on a paper, published in the Palliative Medicine journal, which explores how we support people to manage their digital legacy after death.
In this paper Sarah Stanley , and collegaues, used a constructivist grounded theory approach, and semi-structured interviews, to understand healthcare professionals’ (working in a hospice) experiences of managing digital legacy.
The results demonstrated the following:
Palliative care healthcare professionals believe that managing digital belongings is as important as managing physical belongings.
Palliative care healthcare professionals require education to improve their knowledge and understanding of digital legacy.
Digital legacy should become part of advance care planning conversations.
The paper is freely available (open access) from the link below and is Editor’s choice article of Palliative Medicine for October 2023.
I have written an Editorial for the Palliative Medicine journal about the unrealised potential of palliative care telehealth. In the Editorial, I discuss the opportunities and challenges associated with telehealth; I also describe the next steps needed for research to evaluate palliative care telehealth.
I have also recorded a podcast to summarise the Ediorial. The article and podcast are freely available from the links below:
We are delighted to announce that Marie Curie Hospice Liverpool, in partnership with the Inclusionaries Lab, has won a prestigious award at an event recognising the best innovators and researchers in health and care in Cheshire, Merseyside, Lancashire and South Cumbria.
The North West Coast Research and Innovation Awards is the only health awards event for the region, run by three NHS bodies focussed on research and innovation. The Culture for Innovation Award was presented to Marie Curie Hospice Liverpool (in partnership with the Inclusionaries Lab, University of Liverpool) in recognition of the innovative ‘Designer in Residence’ project, which involves hosting a designer (Andrew Tibbles) in Marie Hospice Liverpool for a year, to research how design methods can improve future palliative care. This project has resulted in the opening of a temporary Research Hub in the clinical area of Marie Curie Hospice Liverpool, the creation of a prototype phone installation to capture people’s experiences of hospice care, and the development of future work to explore how design can support future digital legacy research.
Marie Curie Hospice Liverpool win the CULTURE FOR INNOVATION Award. North West Coast Research and Innovation Award 2023 at The Spine Liverpool.
Left to right: Dr Laura Chapman (Medical Director and Consultant in Palliative Care, Marie Curie Hospice Liverpool), Sarah Stanley (Research Nurse, Marie Curie Hospice Liverpool), Dr Amara Nwosu (Senior Clinical Lecture in Palliative Care, Lancaster University; Honorary Consultant in Palliative Care, Liverpool University Hospitals NHS Foundation Trust; Research Lead, Marie Curie Hospice Liverpool), Andrew Tibbles (PhD Design student, the Inclusionaries Lab – University of Liverpool), Hayley Hawkins (Deputy Head of Operations, Marie Curie Hospice Liverpool).
Commenting on the award, Dr Amara Nwosu (Senior Clinical Lecture in Palliative Care, Lancaster University; Honorary Consultant in Palliative Care, Liverpool University Hospitals NHS Foundation Trust; Research Lead, Marie Curie Hospice Liverpool) said “We are delighted to be the first palliative care winner of an award from North West Coast Research and Innovation Awards. Palliative care is an essential component to effective healthcare systems; we are proud that our innovative work to use design methods to shape palliative care services has been acknowledged through this wonderful award”.
Special guest Professor Sir Stephen Powis, Medical Director of the NHS, said: “Every challenge we face is an opportunity to learn, collaborate and embrace new approaches to deliver improvements in the services we provide, for the benefit of patients, staff and the wider NHS.
The event took place at The Royal College of Physicians, The Spine in Liverpool, hosted by BBC TV North West and Breakfast presenter Roger Johnson. The full list of winners is below; to find out more about their entries, visit www.nwcawards.co.uk.
WINNERS 2023
Culture for Innovation Award: Marie Curie Hospice Liverpool
Innovation in Workforce Development Award: Health Education England NW; Lancashire and South Cumbria NHS Foundation Trust; University of Central Lancashire
Patient Safety and Care Improvement Award: Liverpool University Hospitals NHS Foundation Trust and Innovation Agency
Research Student of the Year Award: Piotr Teodorowski, University of Liverpool
Ruth Young Award for Research Implementation: Liverpool Heart and Chest Hospital NHS Foundation Trust
Outstanding Contribution to Patient and Public Involvement Award: Lancaster University
Research Delivery Team of the Year Award: Warrington and Halton Teaching Hospitals NHS Foundation Trust
Research Collaboration of the Year Award: Marine Lake Medical Practice and Wirral University Teaching Hospital NHS Foundation Trust
Primary Care and/or Community Research Team of the Year Award: Lancaster Medical Practice
Unsung Hero: NHS 75th Anniversary Award: Sue Smith of One Wirral CIC
Tackling Health Inequalities Award: Liverpool John Moores University; University of Liverpool; Edge Hill University
Sustainability Award: Liverpool University Hospitals NHS Foundation Trust, Broadgreen University Hospital
The Churchill Fellowship is an overseas travelling fellowship to support UK citizens to travel the world in search of innovative solutions for today’s most pressing problems. The Churchill Fellowship was founded by public donation in 1965 as the living legacy of Sir Winston Churchill for the UK.
The aim of my Fellowship
I aim to research how technology, data and design can support healthcare for people who with serious illness. This is because the UK population is ageing and palliative care need will increase by 42% by 2040; demand for care wil be challenging for NHS to meet without innovation. Palliative care need in the UK has been exacerbated by the impact of the COVID-19 pandemic. When used well, digital health improves access to healthcare services; however, many barriers prevent meaningful use of these technologies in the UK. Through this Fellowship, I will travel to the Netherlands (Erasmus Medical Center, Rotterdam; Delft University of Technology (TU Delft), Delft and IKNL, locatie Utrecht) and the USA (Dana Farber Cancer Institute, Harvard University, Boston) to meet professionals from a variety of disciplines who are using applications of design, technology and data in palliative care that can benefit the UK.
My travels (eventually) begin!
The My trip has been delayed due to the COVID19 pandemic, but I have finially commenced my trip to the Netherlands in May 2023! Firstly, I visited the Nemo Science Museum in Amsterdam which housed a fantastic exhibition about death and dying. The section titled ‘Over de dood’ (About Death) takes people through a journey about people’s views and experiences of death and dying from different cultural perspectives. The exhibition uses a mix of text, images and lighting to provide a thoughtful and emotional experience about death and dying, from a societal and human persepctive rather than a medical one. I really loved the design of the exhibition, with its inclusion within a family science musuem but also located within the ‘Hoe word ik ouder’ (How will I age?) section of the musuem, which presented positive messages about aging.
Next stop is to visit Delft University of Technology (TU Delft), where I will deliver a seminar about my research and will meet designers and engineers to learn about their excellent work.
I will provide updates about my progress in further blogs and I will record a podcast to summarise the findings of my trip.
My Research interest
The evaluation of technology to support care for patients with advanced disease.
Examples of my interests for the fellowship
Telehealth
Architecture and design in healthcare / palliative care
Technology to support care in serious illness
Design in healthcare and palliative care
Digital legacy (e.g., how digital data is managed after death)
Virtual reality
Social robotics and healthcare / palliative care
Use of mobile devices, apps, wearable devices to support healthcare /palliative care
We are delighted to be close to launching a ward-based ‘Research Hub’ in Marie Curie Hospice Liverpool, which will enable hospice-based researchers to have closer connection with patients, caregivers and staff. We that the Research-Hub will help to raise awareness of the importance of palliative care research, and will support closer working practices between research and clinical staff.
The Research Hub pilot will run for a few months until early 2023, following which we will review the project to determine how this model can potentially support research practice and innovation in our hospice and other palliative care settings. Please stay tuned, over the next few months, for further information about the ‘Research-Hub’ of Marie Curie Hospice Liverpool.
Marie Curie Hospice Liverpool are delighted to welcome two design researchers from the University of Liverpool to conduct a project to design the future of hospice care.
Andrew Tibbles (right) is a Ph.D. researcher in Design for End of life and Dr Farnaz Nickpour (left) is an Associate Professor in Design & Innovation.
Andrew and Farnaz will be ‘Designers in Residence’ in Marie Curie Hospice Liverpool for a year, where they will study all areas of the hospice. The aim of the Designer-in-Residence programme is to co-define and co-imagine current and future hospice care as an ecosystem of people, objects, environments, technologies, practices and narratives of care. The programme has three distinct objectives and deliverables respectively:
a) co-creating a systems map of the current hospice care;
b) co-defining key values, requirements and challenges in the current system; and
c) co-imagining new value propositions in future hospice care systems.
You can find out more about the work of Dr Farnaz Nickpour and Andrew Tibbles, by visiting the website of their Design Research Lab: www.inclusionaries.com
On 08/09/2022 I delivered a talk called ‘Death, dying and the metaverse’, as part of the ‘International Collaborative for Best Care for the Dying Person’ webinar series. In this talk I reflect on my thoughts about how Web 3.0 technologies will affect how society will experience death and dying. I also discuss concepts such as digital legacy and digital immortality.
My talk starts at the 26 minute mark and is available from this link:
We have deposited our paper “Technology in Palliative Care (TIP): the identification of digital priorities for palliative care research using a modified Delphi method” on the medRxiv preprint server (ahead for formal peer reviewed publication)
The aim of this study was to identify research priority areas for digital health in palliative care.
This is first study to identify digital health research priorities for palliative care and provides guidance for researchers, funders and policy makers to consider areas for future research and development.
We identified 16 research priority areas for technology in palliative care, representing 8 themes of big data, mobile devices, telehealth, virtual reality, artificial intelligence, the smart home, biotechnology and digital legacy. Our findings will support researchers, clinicians and policy makers to improve the evidence base in these areas, through further research and development. This work is timely and important, as global palliative care need is increasing but there is a lack of evidence of how digital health can be meaningfully used to support care needs of people with advanced illness. Therefore, it is important that the risks of using these technologies in palliative care are properly addressed to ensure that these tools are used meaningfully, wisely and safely and do not cause unintentional harm
The pre-print is freely available from the following link. Please note, that this has not been peer reviewed so should not yet be used to guide clinical practice.
Can we use technology better to support communication in palliative care?
We are looking for palliative care healthcare professionals to share their experience of using technology to communicate during the COVID19 pandemic.
The study is funded by Marie Curie is led by Sarah Stanley (research nurse at Marie Curie Liverpool Hospice). The study has ethical approval and is sponsored by Lancaster University.
We are seeking the opinions of Palliative Care healthcare professionals who have worked in the UK during the COVID19 pandemic.
This a short electronic survey (takes roughly 10 -15 minutes to complete) can be completed from a smartphone, laptop or desktop computer.
We will identify how technology have been used in palliative care, been used to support communication during the COVID19 pandemic.
We will use the outcomes of this work to inform policy, to identify how technologies can be used to improve palliative access beyond the COVID19 pandemic.
All the participant information, consent form and survey can be assessed from the link below.
Anaemia is common in hospice populations and associated with significant symptom burden. Guidelines recommend investigating for and treating iron deficiency (ID), but there is little evidence of this practice in palliative care populations. Our paper (published in AMRC Open Research) describes the results of investigations for and subsequent management of ID in Marie Curie Hospice Liverpool.
Our data demonstrates that iron deficiency is common and can be safely treated with intravenous iron replacement, within current guidelines, in a hospice setting. Further research should define the optimum use of this approach in palliative care patients.
Amara Nwosu 