{"id":999,"date":"2020-07-14T14:37:33","date_gmt":"2020-07-14T14:37:33","guid":{"rendered":"https:\/\/blogs.imperial.ac.uk\/perc\/?p=999"},"modified":"2020-07-16T08:30:54","modified_gmt":"2020-07-16T08:30:54","slug":"feedback-wall-a-patients-question-inspires-art-and-science","status":"publish","type":"post","link":"https:\/\/blogs.imperial.ac.uk\/perc\/2020\/07\/14\/feedback-wall-a-patients-question-inspires-art-and-science\/","title":{"rendered":"‘What makes you feel alive?’ A patient’s question inspires art and science."},"content":{"rendered":"
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CRUK Senior Research Nurse, Kelly Gleason<\/a>, shares how one patient\u2019s vision continues to inspire her, and influence how we involve and engage the public in healthcare and research design at Imperial.<\/strong><\/p>\n

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Sunday evening, November 14th 2014, we stood in the dark on Exhibition Road, staring through the large glass windows into the main entrance of Imperial College London. There stood twenty-four portraits, assembled as six pillars, ready to tell their story. A woman in a black dress sitting on an aluminium step stool wearing a carnival headdress, a man in leathers on a motorcycle, a toddler in her dad\u2019s arms gesturing a story with her hands, these were the people keeping Rina Dave alive.\u00a0 These were the people she met during her treatment for stage 4 breast cancer; the people Rina wanted the world to see at their most alive. She also wanted to show how many people were keeping her, Rina, alive.<\/p>\n

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As a patient at Charing Cross Hospital, Rina had the idea to photograph the people involved in her care. She wanted to portray them outside their healthcare roles to humanise them in the eyes of other patients.<\/p>\n

In 2015, Rina peacefully passed away at home in India. Rina taught me many things during the hours we worked together, and I wanted to share these insights with others.\u00a0 Professor Sophie Day of the Patient Experience Research Centre helped me to explore how we could continue to share Rina\u2019s project.<\/p>\n

In 2019, inspired by Rina\u2019s photography project, we designed a feedback wall to engage and involve members of the public in research at Imperial\u2019s annual Great Exhibition Road Festival<\/a>. We were working on a research project, funded by the Wellcome Trust, called \u2018People Like You\u2019: Contemporary Figures of Personalisation<\/a><\/em>.\u00a0 One aspect explored personalised medicine and health care in breast cancer medicine at Imperial College Healthcare Trust. We used Rina\u2019s question, \u201cWhat makes you feel alive\u201d to start a conversation about what it was that inspired each individual person. This in turn allowed us to continue the conversation and share some of our research around personalised medicine and cancer care at different Trust sites.<\/p>\n

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The feedback wall was an easy way to begin a conversation: people stopped to read the tags, we introduced the question for feedback and invited them to leave their thoughts.\u00a0 People thought with family members or friends, and children enjoyed taking part.\u00a0 People wrote their answers on tags and tied them to the wall.\u00a0 Feedback was left anonymously and the more answers we collected, the more people stopped to read and then take part.<\/p>\n

The success of the feedback wall at the 2019 festival prompted us to test it in other settings.<\/p>\n

At a public involvement training session for cancer researchers, we used a feedback wall to ask researchers a question before and after training. At the beginning of the session we asked, \u201cWhat do you find most challenging about involving patients in your research?\u201d.\u00a0 This gave us valuable information on how to support researchers during training \u2013 researchers working in labs wanted us to facilitate access to patients.\u00a0 At the end of the training we asked them, \u201cWhat do you now look forward to when involving patients in your research?\u201d.<\/p>\n

Later that year, at an Imperial National Institute of Health Research Biomedical Research Centre (NIHR BRC) Open Day, we showcased the Imperial Science Caf\u00e9 platform, which had been running for almost a decade at Maggie\u2019s West London.\u00a0 Researchers presented findings to patients and the public to open a dialogue around research and cancer care. We asked visitors what research topics they most wanted to hear about and used some of their ideas to shape the upcoming Imperial Science Caf\u00e9 series and others to share with researchers across the BRC.<\/p>\n

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Imperial CRUK Science Caf\u00e9 at Maggie’s West London<\/figcaption><\/figure>\n

We also wanted to test the feedback wall in a clinical area.\u00a0 After discussion with some of the nurses in oncology services at Charing Cross Hospital we decided to test it out in the Chemotherapy Day Unit.\u00a0 The nurses were keen that the wall facilitate conversations that might help them learn something about their patients rather than a more traditional response to services. As everyone goes home each day from the Chemotherapy Day Unit, we decide to ask both patients and staff, \u201cWhat do you most look forward to when you go home at the end of the day?\u201d. Unfortunately, due to COVID-19, this feedback wall had to be removed shortly after installation, but it was popular while in use and we hope to put it back soon.<\/p>\n

Valuable information was gained from these feedback wall \u2018test\u2019 sites. It proved to be an easy, inexpensive and engaging tool. And so, we made this video\u2026<\/p>\n