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:
Death, dying and the metaverse talk – Dr Amara Nwosu
We are delighted that our research funding application to develop ‘use cases’ for digital palliative care bereavement service was successful. The project will be funded by Liverpool Clinical Commissioning Group and is part of the Research Capability Funding stream.
We will aim to conduct the study in 2022. The lay summary is below.
Please contact me on Twitter @amaranwosu for further information:
Lay Summary
Grief, bereavement and the need for bereavement services
Grief is a natural process, in which many people will cope with help from their friends and family. However, many people will need professional help.1-3 People who are bereaved are more likely to have problems with their mental health and wellbeing. 4-6 These problems can affect many people in society.7-9 Therefore, good bereavement care is important to ensure that people get the support they need when they are grieving.3
Challenges facing bereavement services
There are many challenges to delivering bereavement care, these include:
Can digital bereavement services help more people receive support?
It is possible technology can be used to help more people to access bereavement support.13 However, it is important we carefully design these systems so they work properly.
In this project we will create the ‘blueprint’ needed to design a new digital bereavement serviceIn this study we will interview staff and caregivers about bereavement support, to understand what a digital bereavement service should look like. We will use this information to design the ‘blueprint’ which is needed to design a new digital bereavement support service. In computer science this ‘blueprint’ is called a ‘use-case’.14 15 We will partner with computer developers to design ‘use-cases’ which we can then use to build a digital bereavement service. After this study we will do more research to test whether the new digital bereavement service is helping more people to get the support they need.
References
1. Aoun SM, Breen LJ, Howting DA, et al. Who needs bereavement support? A population based survey of bereavement risk and support need. PloS one 2015;10(3):e0121101.
2. Pattison NA, White C, Lone NI. Bereavement in critical care: A narrative review and practice exploration of current provision of support services and future challenges. Journal of the Intensive Care Society 2020:1751143720928898.
3. Harrop E, Selman L, Farnell D, et al. 6 End of life and bereavement experiences during the COVID-19 pandemic: Interim results from a national survey of bereaved people. BMJ Supportive & Palliative Care 2021;11:A3-A3.
4. Guldin M-B, Vedsted P, Zachariae R, et al. Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: a longitudinal cohort study. Supportive care in cancer 2012;20(8):1679-85.
5. Wittouck C, Van Autreve S, De Jaegere E, et al. The prevention and treatment of complicated grief: A meta-analysis. Clinical psychology review 2011;31(1):69-78.
6. Stroebe M, Schut H, Stroebe W. Health outcomes of bereavement. The Lancet 2007;370(9603):1960-73.
7. Birrell J, Corden A, Macduff C, et al. Socio-economic costs of bereavement in Scotland: main study report. 2013
8. van den Berg GJ, Lundborg P, Vikström J. The economics of grief. The Economic Journal 2017;127(604):1794-832.
9. Genevro J, Miller T. The emotional and economic costs of bereavement in health care settings. Psychologica Belgica 2010;50(1-2)
10. Harrop EJ, Goss S, Farnell DJ, et al. Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic. medRxiv 2021
11. Wakefield D, Fleming E, Howorth K, et al. Inequalities in awareness and availability of bereavement services in north-east England. BMJ Supportive & Palliative Care 2020
12. Etkind SN, Bone AE, Gomes B, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Medicine 2017;15(1):102. doi: 10.1186/s12916-017-0860-2
13. Morris SE, Ryan AK. Bereavement via Zoom during COVID-19. Journal of psychosocial oncology 2021:1-4.
14. Cockburn A. Writing Effective Use Cases. https://books.google.co.uk/books?id=TUZsAQAAQBAJ: Addison-Wesley 2001.15. Clausen M, Apel R, Dorchain M, et al. Use Case methodology: A progress report. Energy Informatics 2018;1(1):273-83.
15. Clausen M, Apel R, Dorchain M, et al. Use Case methodology: A progress report. Energy Informatics 2018;1(1):273-83.
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.
All the participant information, consent form and survey can be assessed from the link below.
Healthcare professionals’ use of video communication technology has increased during the novel coronavirus disease (COVID-19) pandemic, due to infection control restrictions. Currently there is little published data about the experiences of specialist palliative care teams who are using technology to communicate during the COVID-19 pandemic. The aim of this evaluation (published in AMRC Open Research) was to describe the experience of a UK based hospital specialist palliative care team, who were using video communication technology to support care during the COVID-19 pandemic.
Video communication technology has the potential to improve specialist palliative care delivery; however, it is essential that healthcare organisations address the existing barriers to using this technology, to ensure that these systems work meaningfully to improve palliative care for those who are most vulnerable beyond the COVID-19 pandemic.
More information can be found here:
Crosby B, Hanchanale S, Stanley S and Nwosu AC. Evaluating the use of video communication technology in a hospital specialist palliative care team during the COVID-19 pandemic [version 1; peer review: awaiting peer review]. AMRC Open Res 2021, 3:5 (https://doi.org/10.12688/amrcopenres.12969.1)
I’m delighted to write a geust blog for BMJ Supportive and Palliative Care about how palliative care care be improved through use of digital health technology. I also reflect on how this presents an opportunity to learn from the COVID19 pandemic. Specifically, I reference an article by Clabburn and colleagues, which describes the novel use of ‘Ivy Street’, a Virtual Learning Environment to support palliative and end of life care education.
Read my guest blog here:
I was delighted that our letter about Big Data and palliative medicine was published in ‘Palliative Medicine’. This was in response to an editorial by Peter Tanuesputro which described how Big Data analysis of linked data has the potential to support care by indentifying patient needs. Our letter describes five challenges which need to be considered in order to make meaningful use of Big Data analysis in palliative care.
The letter is freely available in full from the link below.
I was delighted to be invited to write a guest blog for the European Association of Palliative Care (EAPC) website, about my role in developing podcasts for ‘Palliative Medicine’ in my role Digital Editor for the journal.
The full blog post can be found here:
Learning through listening EAPC guest blog
How to access the ‘SAGE Palliative Medicine & Chronic Care’ podcasts
Much written about the potential to use digital tools to reform healthcare, concentrate on the short to medium term (i.e. 5- 10 years). However, many of the benefits from digital health will only be fully realised in the longer (i.e. >10 years) term. This is because benefits arising from disruptive technologies may only be achieved following the implementation of cultural, workforce and infrastructural change, which can take time to achieve.
The King’s Fund Digital Health Conference recenty took place across two days in London (11th – 12th July) and provided an opportunity for profesionals from different disciplines to discuss how digital technologies can be used to transform healthcare delivery in the long term. There were several speakers and workstream groups which covered discussion of the opportunities and challenges of these approaches, in addittion to providing many examples of current use of technological and workplace innovation.
Particular highlights for me was Rob Shaw’s (Interim Chief Executive for NHS Digital) talk about the NHS Digital’s perpective on the importance of utilising health data better to provide integrated care. Also, Nicola Perrin (Wellcome Trust) provided an overview of the ‘Understanding Pataient Data’ project, which looks to improve awareness in society (professionals and lay people) about the value of using healthcare data to support patient care. Furthermore, the Wellcome Trust this year will undertake a project which will examine public perceptions of the role of new emerging technology (e.g. artificial intelligence, machine learning) in healthcare.
Many of the talks at the conference had inter-connecting themes; highlighting the importance of forming policy to shape culture through engagement of wider society and professionals. Although there is evidence of innovative work in several areas, a lot of fragmentation is currenty present. Consequently, it is important for collaborations of partners with a shared common vision for digital health.
As an academic palliative medicine physician I am interested in the potential digital health applications to support the management of people with serious illness. If anyone is also interested in undertaking work in this area, please feel free to contact me.
Further information of the King’s Fund Digital Health Conference (and other events by the King’s Fund) can be found here:
https://www.kingsfund.org.uk/events/digital-health-and-care-congress-2017
Amara Nwosu 