Reflections from a Public Patient Involvement member on being part of an out-of-hours community palliative care research study

Research that has input from patients, families and the public from the start is more likely to make a difference. Margaret Ogden, Chair of the Public Patient Involvement (PPI) group for the ‘Understanding and improving community-based palliative care outside of normal working hours’ project at Cicely Saunders Institute, King’s College London, United Kingdom, explains.


 

Margaret Ogden.

The second phase of the study for the ‘Understanding and improving community-based palliative care outside of normal working hours’ project was a Delphi study. The Public Patient Involvement group was at first very traditional in terms of attending meetings and giving input, but the activities have become more diverse as the Delphi process unfolded. For me, the Delphi has been an exciting and challenging technique and a big learning curve, so the PPI then became more intense than usual.

Rural and urban areas are something we talked about a lot. I related my experience of accessing medication and that it may be much easier in an urban area than in a small village that is 12 miles away from the nearest town. I come from a small, former mining village in County Durham where there are pockets of deprivation and different levels of health literacy, which are important when trying to access care. Delivery of medications is also important, my uncle had vascular dementia and while he was at home there were a few problems with getting his medication.

We talked about the professionals who were involved in out-of-hours care, and particularly how nurses are wonderful support. It can be a nurse rather than a general practitioner (GP) who is the key figure, but that may have implications. My uncle had not seen a GP in the last fortnight of his life, so the coroner requested a post-mortem. This was stressful as he is the first member of my family that we went through that process with, and it was very strange. I did make mistakes in the administration and with the coroner’s office and perhaps could have done with more support through that process.

The experience of the rounds in the Delphi study was great, one of the most dynamic Public Patient Involvement activities I’ve experienced. The questions were informed by focus groups, the literature review, the Marie Curie workshop findings as well as input from our Public Patient Involvement group. The task was to rank, refine and reach consensus and that consensus process was so interesting. I had only come across ranking before in James Lind priority setting (enabling clinicians, patients and carers to work together to identify and prioritise evidence uncertainties in particular areas of health and care that could be answered by research), so this was a whole new world for me. I particularly enjoyed doing the pilot beforehand when we each had a dummy run of the process and timed it. It was interesting to see how the content was refined. The Delphi study is now complete, and the Public Patient Involvement members have reviewed an abstract that is being presented at a Marie Curie conference by Peter Buckle (PPI) and Joanna Goodrich (Research Associate). Hopefully, all the other PPI members will attend.

Overall, I find Public Patient Involvement so valuable, and members and colleagues are like family. Being in the role provides me with self-esteem, confidence and joy. It’s wonderful having a light bulb moment and I know my contributions are valued by colleagues, and the feedback process has been robust. It has been a welcome accolade to hear I motivate other Public Patient Involvement members.

Links and resources

More about the author and the Public Patient Involvement (PPI) Group

Margaret Ogden is involved in numerous projects at the Cicely Saunders Institute (CSI), including Better B and CovPall. She is also a member of the CSI PPI Strategy group and co-led a PPI evaluation which informed the revised CSI PPI Strategy. There are three other members of the ‘Understanding and improving community-based palliative care outside of normal working hours’ project. Sue Farr, who has been involved from the outset of the project and attended the Research Ethics Committee, Peter Buckle who brings experience from being part of Marie Curie Research Voices, and Rashmi Kumar who provides expertise in diversity and is currently the chair of the CSI PPI Strategy Group.

Funding statement
This work is supported by Marie Curie, grant 20171219-8011.


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