Amara Nwosu

MBCHB FRCP PhD


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Ward-based ‘Research Hub’ preparing for launch in Marie Curie Hospice Liverpool

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.

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Development of ‘use-cases’ for a digital palliative care bereavement service [new study for 2022]

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:

  • There is not enough resources to meet current demand.10 
  • Some people may not easily receive support because they live in an area where there are few services.11 
  • Some people struggle to find time to receive support during working hours due to their other commitments.
  • The COVID-19 pandemic has increased demand and has made it difficult for people to access services.3 2 
  • Palliative care need is increasing and is expected to increase by 42% in 2040, this will also increase need for bereavement support.12

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.


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Digital health priorities for palliative care research

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.

Nwosu AC, McGlinchey T, Sanders J, Stanley S, Palfrey J, Lubbers P, Chapman L, Finucane A, Mason S. Technology in Palliative Care (TIP): the identification of digital priorities for palliative care research using a modified Delphi method. Medrxiv 2021. https://doi.org/10.1101/2021.06.24.21259307

health technology design, vector illustration eps10 graphic


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Investigation and management of iron deficiency anaemia in a specialist palliative care setting and the role of intravenous iron: a descriptive analysis of hospice data

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.

More information can be found here:

Steele T, Bonwick H, Nwosu AC and Chapman L. Investigation and management of iron deficiency anaemia in a specialist palliative care setting and the role of intravenous iron: a descriptive analysis of hospice data [version 1; peer review: awaiting peer review]. AMRC Open Res 2021, 3:6 (https://doi.org/10.12688/amrcopenres.12963.1)

Medical photo created by rawpixel.com – www.freepik.com


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Implantable cardioverter defibrillator (ICD) deactivation in palliative care – a case involving best interest decisions for someone lacking capacity at the end of life

The use of implantable cardioverter-defibrillators (ICD) has increased due to benefits of preventing death from cardiac arrhythmia. However, the increasing use of ICDs has created new challenges for how to proactively manage deactivation of these devices in people who are dying, especially for those who lack capacity to make decisions about their care. The aim of this case report is to discuss the challenges of planning for deactivation of an ICD for a patient who lacked capacity at the end of life.


In this case report (published on AMRC Open Research) we describe the challenges of managing ICD deactivation in a dying patient with fluctuating capacity who had previously expressed a wish for the ICD to remain active. Although it is preferable to use advance care planning (ACP), to provide care in-line with patient-identified care preferences, we demonstrate how a best interest process can be used to make decisions about ICD deactivation at the end of life.

More information can be found in our case report here:

https://amrcopenresearch.org/articles/3-4


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The use of advance consent to enable hydration assessments, for research, at the end of life

As the need for palliative care increases, it is essential for research opportunities to be offered to patients with palliative care needs to ensure patients can receive evidence-based treatments and services to improve care. Although it is recognised that palliative, and in particular end of life, research can be both methodically and ethically challenging it is important to note that palliative patients are keen to be involved with research.
Over the past three years, patients in Marie Curie Hospice Liverpool have been recruited to a research study evaluating hydration, where advance consent methodology is used to facilitate participation at the end of life. In this study, participants provided ‘advanced consent’ to receive research assessments, in anticipation of the deterioration of their health and loss of the ability to provide consent to ongoing research participation. During this process, recruiting participants will nominate a consultee (who can be any family member, friend or healthcare professional), who is contacted by the researcher prior to completion of research assessments. Participants will generally choose a caregiver or friend to act as a personal consultee; however, there may be some instances where a healthcare professional is chosen.
In this, we share our experiences using advanced consent methodology and a healthcare professional acting as a consultee, to facilitate research assessments in a patient who was lacking capacity at the end of life.

More information can be found in our case report here:

Stanley S and Nwosu AC. Case Report: The use of advanced consent methodology and healthcare professional consultee to facilitate research participation in dying patients [version 1; peer review: awaiting peer review]. AMRC Open Res 2021, 3:3 (https://doi.org/10.12688/amrcopenres.12961.1)


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Learning through listening: The development of the ‘SAGE Palliative Medicine & Chronic Care’ podcast

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

Screen Shot 2017-08-22 at 15.16.17

 

How to access the ‘SAGE Palliative Medicine & Chronic Care’ podcasts

  • Subscribe to the podcasts from iTunes here.

 


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The future of digital health? the King’s Fund Digital Health and Care Congress 2017

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

IMG_20170712_134205946


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Internet of Things Technology for elderly home support – NHS Knowledge Exchange Scheme

This year I was delighted to have been chosen to participate in the NHS North West Research and Development Knowledge Exchange scheme. This was the inaugural year for an exchange program which aims to facilitate the sharing of ideas, skills and knowledge between the health, University and business sectors. The hope is that such an exchange will lead to future innovation and collaboration between these areas.
The scheme was a fantastic opportunity for me to build on my interests of how new emerging technology is used to support care for people living with advanced illness. On the 5th of July I had the pleasure of spending a day with the Howz (https://www.howz.com), a company that specialises in the development of Internet of Things Home monitoring devices. Howz is a platform aimed at elderly people, typically living alone, that monitors energy usage, linking to patterns of daily activity which are identified by non-invasive multi-sensors that track heat, light and movement.The data is fed into live updates within the Howz app interface, allowing the user to notify their care network of their daily routine. The app also uses the data to spot anomalies in daily activity and send alerts to a family member, friend or care giver.
Throughout the day I met with different members of the team and discussed the opportunities and challenges surrounding the development of technology to provide health monitoring in the home environment. We shared potential solutions for overcome theses challenges and discussed opportunities for future work and collaboration.
 IMG_20170705_145711312.jpg
Further information about the Knowledge Exchange Scheme for Early Career Researcher can be found here:
Further information about Howz can be found here:


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AmiPal podcast – Use of podcasts to facilitate education, communication and dissemination in palliative care – episode 22

This episode of AmiPal is about the development of this podcast. I’ll discuss my paper which was recently published in BMJ Supportive and Palliative Care:

Use of podcast technology to facilitate education, communication and dissemination in palliative care: the development of the AmiPal podcast.
spcare.bmj.com/content/early/201…bab6-eab94e775c39

Edison Research. The podcast consumer 2015. Website of Edison Research 2015.www.edisonresearch.com/the-podcast-consumer-2015/.

Davidson L. How Serial shook up the podcasting industry. Website of the Telegraph 2015.www.telegraph.co.uk/finance/newsbys…g-industry.html.

Sinclair C. Palliative Care Podcasts. Website of Pallimed 2015.
www.pallimed.org/2015/05/palliati…re-podcasts.html.

Lin M, Thoma B, Trueger NS et al. Quality indicators for blogs and podcasts used in medical education: modified Delphi consensus recommendations by an international cohort of health professions educators. Postgraduate Medical Journal 2015;91(1080):546-50.
pmj.bmj.com/content/91/1080/546.long

Adam Lella. Number of Mobile-Only Internet Users Now Exceeds Desktop-Only in the U.S. (April 2015)
www.comscore.com/Insights/Blog/Nu…-Only-in-the-U.S

Tommy Helgevold. Build a radio in less than 1 minute
www.youtube.com/watch?v=3Zzmi_Kno4w

AmiPal – SoundCloud: @mypal
AmiPal – Stitcher: www.stitcher.com/podcast/mypal-te…-palliative-care
AmiPal – TuneIn: tunein.com/radio/AmiPal-Palliative-Care-p837382/
AmiPal – Acast: www.acast.com/amipal

Audacity® is free, open source, cross-platform software for recording and editing sounds
www.audacityteam.org/

Copyright Dr Amara Nwosu, AmiPal Media 2016.
www.amaranwosu.com
twitter.com/amaranwosu

Music by Bensound
www.bensound.com/royalty-free-music