The dreaming spires…

July 15 2017

Merryn writes….

Almost half a life time ago, I did my undergraduate degree at the University of Oxford. Therefore, going back as an invited speaker felt both exciting and, if I’m honest, slightly daunting. The setting was impressive: university seminar rooms the world over are known for their functional, yet often stark, decor. However, the Nuffield Department of Primary Care Health Sciences host their seminars in a church with beautiful stained glass windows. The occasional tourist wandered in to have a look, but didn’t seem keen to stay and learn more about palliative care!

However, again it was really pleasing that there was a lot of interest in our work, from several different angles. There were people there very involved with PPI work (the involvement of patients and members of the public in research) who were interested in our participatory research approaches, as well as the framework Tess and Stella, together with our Te Arai kaumatua, have developed to support the inclusion of Maori in all the research we do. One issue that has certainly been given more thought within the New Zealand research context is that of power, particularly in relation to who has the opportunity to influence the nature, process, and dissemination of research (see, for example, the excellent Decolonizing Methodologies by Professor Linda Tuhiwai Smith).

The need to understand cultural context was also raised by Dr Richard Lehman who, among many other things, writes a must-read weekly review of medical journals for the BMJ. I had previously written a book chapter with Richard and other colleagues on palliative care in heart failure, so it was great to have the opportunity to meet in person at last. One thing he was interested in was the disconnect between individualist understandings of autonomy, which underpin much health policy including within palliative care, and collectivist principles that underpin many non-Western cultures. We agreed that much more work is needed, both in the UK and internationally, to ensure services are truly understanding, and inclusive, of cultural diversity.

It was also good to meet Dr John MacArtney in person, having long followed his work with Professor Alex Broom, which draws on critical sociological theory to identify messages with very real world relevance within a palliative care context. He is currently involved in international comparative research, as am I, and it was interesting to reflect on the value of such work (as well as chat over lunch about our many other common research interests, as well as the best way to cope with a courgette glut!).

The discussion ended by exploring ‘impact’ and how this can be captured within the context of our research, and the work of their group, particularly the Health Experiences Research Group, who contribute to the healthtalk website which is an amazing resource for the public, clinicians, and researchers. We both believe that personal narratives have huge potential to improve the provision of healthcare; however, capturing (and ‘measuring’ impact) within this context is very challenging. We have much to learn from the work they have done in this, and many other other areas, and so decided we should keep talking. We agreed we could do this online, in Oxford, or I issued an open invitation to come and visit us in New Zealand!

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