In December, I was contacted by a colleague who asked me whether I was willing to discuss my research with some students undertaking a research course which included the topic of Patient and Public Involvement (PPI). I was pleased to be receiving such an offer, and I accepted it immediately. Close to the day of the meeting, I sent an email asking more about the students’ knowledge and or experience of research involvement by then, so that I could have used adequate resources and language. The answer was (I am citing following consent) ‘we have no clue […]. We feel like kids looking for a fish in the ocean.’ ‘I am not surprised’, I answered; ‘honestly speaking, I often feel that too’. Up for the challenge, as crazy as it may sound, I decided to start from our common ground—the ocean—and use some ‘magic’ too. Let me explain. My mom, a primary school teacher, used to say that tales are an excellent shortcut to effective learning; indeed, they often enable active engagement and increase the likelihood of long-term retention of information. Some researchers may call it ‘storytelling’, but my mom calls it ‘the magic of talking tales’. Considering the circumstances, I thought to open the conversation discussing a tale describing my very first experience of involving the PPI group VOICE in my PhD project. The participation obtained as a result was beyond expectations, and this is why I decided it to share it with you all. If you fancy a break from the extensive literature on PPI, which is very confusing and frightening at times, challenge yourself and get ready for a journey across the Research Involvement Ocean! You will not find answers, but you may gain a deeper sense of its benefits.
Ester’s journey to VOICEland
The ability of many knowledgeable and experienced researchers to handle even the most turbulent ocean water elicits the curiosity of several early-career researchers, including myself, who wonder whether it is safe to navigate the vast, deep and unpredictable Research Involvement Ocean. Discovered not too long ago, this ocean has inexorably evinced the attention of many interested in finding the unknown within the Research World, identifying its characteristics, and providing a detailed description of it all.
There are different Patient and Public Involvement Islands, which define the major divisions of the Research Involvement Ocean; VOICEland is one of them. For those who are unfamiliar, VOICEland is a verdant island characterised by an extraordinary display of flowers whose traits vary, depending on the environment that ensconces them. Although the flowers appear different, they all belong to a plant-protected species called Experience. This plant is not rare to find but is included within the plant-protected species register due to its recent discovery. As greater clarity has emerged on it, an increasing number of Patient and Public Involvement Islands have claimed to contribute to their growth in their lands.
To the best of our current knowledge, the Experience plant necessitates plenty of care and attention to resist the cold temperature. Notably, the environment where this plant can grow varies as much as the characteristics of its flowers. If the plant grows in wild green areas populated by different trees and climbers, the bloomed flowers will be colourful and without thorns–Good Experience flowers. Indeed, if ponds and boggy areas surround it, the bloomed flowers will be dark and with thorns–thus resulting in Bad Experience flowers. The Good and Bad Experience flowers are unequally spread across VOICEland; many of its habitants take care of them during their spare time.
The Experience plant is the reason why I decided to travel to VOICEland. I was nearly one year in my appointment as a gardener of one of the PhD gardens at Newcastle University when I expressed my willingness to move on from the design stage of the space to the planting stage of seeds. I wanted the Good and Bad Experience flowers to be part of the garden, as a result of which, I realised I needed some guidance in choosing the right seeds and learning how to take care of the plant during challenging times as winter. Despite being partly aware of the difficulties I may have had to face, I decided to navigate the Research Involvement Ocean to reach VOICEland, whose population is very knowledgeable about this specific plant-protected species. Before leaving home, I had already prepared myself for the worst-case scenario: failure. Nevertheless, I also drew courage from what they say is true: You never know until you try yourself!
It was not difficult to cross the ocean and reach VOICEland. Upon arriving there, I was able to organise a meeting with some of its habitants. After introducing each other, I shared a few more details about myself, the job at Newcastle University, as well as the reasons that impelled me to visit that place. Then, I sat in a round table with them. Some people started sharing their experiences about the care they provide to the plants; others gave me suggestions on how to prevent some of the risks that could stymie the growth or blooming of the plant; and finally, each of them gave me their feedback on how I had been conducted my job until that point.
In the aftermath of that meeting, I realised that, despite spending hours trying to inform the development of my garden, something was amiss; it lacked real-world experiences. One part of me felt ashamed for having receiving corrections, but the other one was pleased to have the opportunity to make things right. Palpably, I was not yet ready to face my gardening call. Still, I was also not fully aware of the role that general life-long skills acquired (until then) as much as personal qualities could play in certain circumstances. Indeed, as is the case in conducting research, succeeding in gardening entails great attention to detail, passion and dedication, flexibility and adaptability to environmental changes.
My very first meeting with some habitants of VOICEland has left an indelible mark on my PhD garden as much as on my gardening practice. I hope to remember and cherish that experience for the whole duration of my appointment at Newcastle University. While I cannot assert I will no longer be anxious when navigating the Research Involvement Ocean or whilst exploring one of the other Patient and Public Involvement Islands, I will not myopically rule that option out, if necessary. At the end of the day, I am conscious that adopting this approach makes me appreciative of the extraordinary synchronicity of nature spread across the Research World.
Ester Bellavia is a Alzheimer’s Society funded, PhD candidate at Newcastle University. Currently conducting a research aiming to explore the role of Patient and Public Involvement in dementia research and explain how best to involve people living with dementia and family carers. A basketball player and fan, originally from Italy with a background in nursing both overseas and within the NHS, where she also completed an NIHR funded MA in Research Methods at the University of Nottingham.