Author: Philippa Pristera

Getting involved in antibody testing studies: Stories from our public panel

To celebrate continued public involvement in research during the coronavirus (COVID-19) outbreak, the NIHR Centre for Engagement and Dissemination asked organisations and research groups to share their stories. These will then be showcased as narrative Twitter threads @NIHRinvolvement channel from 13-17 July, alongside questions and polls, to encourage a week of discussion and learning around the public involvement during the outbreak.

We responded with two stories, one on how we first launched our COVID-19 community involvement activity, and the other on how we’ve involved the public in Imperial’s REACT study – a major programme of research seeking to improve our understanding of how COVID-19 is spreading across England.

‘What makes you feel alive?’ A patient’s question inspires art and science.

CRUK Senior Research Nurse, Kelly Gleason, shares how one patient’s vision continues to inspire her, and influence how we involve and engage the public in healthcare and research design at Imperial.

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’s arms gesturing a story with her hands, these were the people keeping Rina Dave alive. 

A Midwife in the Pandemic

This World Health Day, Alison Perry shares her experiences as a research midwife returning to the front line of clinical care during the COVID-19 outbreak. #SupportNursesAndMidwives

My name is Alison and I’m the Lead Research Midwife and manager of the Women’s Health Research Centre at Imperial College. My work is at the intersection of health and science and COVID-19 has hit this space like a bolt.

I lead a team of research clinicians (including many midwives) and support a portfolio of clinical research related to reproductive health and childbirth.  Since the outbreak, most of that research is on hold.

Nursing in an epidemic: reflections on HIV nursing in the 1980s and the relevance for COVID-19 today

This World Health Day, Jane Bruton reflects on her time as an HIV nurse during the early years of the HIV pandemic, and shares observations relevant to the COVID-19 outbreak today. #SupportNursesAndMidwives

2020 is the International Year of the Nurse and Midwife and this year’s World Health Day (7 April 2020) celebrates the role that these professions play in keeping the world healthy. Both nurses and midwives are at the forefront of the COVID-19 response. And every day, as I read the experiences of nurses on the front line, it takes me back to my time on the ward.

In 1981, thirty-nine years ago, I qualified as a registered nurse in the UK.

Pandemics, infodemics and the impact on people like you (and me)

By Professor Helen Ward, Patient Experience Research Centre, Abdul Latif Jameel Institute for Disease and Emergency Analytics, School of Public Health, Imperial College London.

“Of all the gin joints in all the towns … of all the one-horse towns … why did this virus have to come to mine?”

The words of my friend Paul who is living in an Italian town under lockdown because of the novel coronavirus epidemic. His frustration is palpable as his plans for travel, work and social life were put on hold for at least two weeks (and subsequently extended for another three). But he reasons, “despite the fact that it’s not a killer disease, we can’t all go around with pneumonia.

What’s New and Promising in Neuropathic Pain Research? Involving Patients in Research Co-Design

This entry is part 5 of 5 in the series PPI Awards: Round 4 Reports

In conversation with: Donna Kennedy, Clinical Specialist Hand Therapy (Imperial College Healthcare NHS Trust) and Postdoctoral Research Fellow (NIHR Imperial Biomedical Research Centre). Working in collaboration with Prof. Andrew Rice, Dr Harriet Kemp and Dr Whitney Scott within the Pain Research Group led by Prof. Andrew Rice.

What did you do?

The Pain Research Group investigates neuropathic pain in the context of infectious diseases, diabetes and nerve trauma. We undertake patient profiling studies, which include cognitive, psychological and physical measures such as skin biopsies and quantitative sensory testing.

What we learnt developing MatImms – a maternal immunisation smartphone app

In conversation with: Dr. Beth Holder, Lecturer in Maternal and Fetal Health Working within the Institute of Reproductive Biology, Department of Metabolism, Digestion and Reproduction, Imperial College London.

What is the MatImms app?

The MatImms app is a free educational smartphone app, which is aimed primarily at pregnant women. The objective of the app is to provide reliable information about vaccinations in pregnancy. This includes background on the immune system and how vaccines work, as well as what vaccines are available and how women can get them. We also included a calendar function, where women can put a vaccine reminder into their phone.

The Young People in Psych Research Group: helping scientists iMAGine better research for self-harm

This entry is part 4 of 5 in the series PPI Awards: Round 4 Reports

In conversation with: Dr Martina Di Simplicio, Clinical Senior Lecturer in Psychiatry, and Rachel Rodrigues, PhD Student. Working within the Mood Instability Research Group, Centre for Psychiatry, Department of Medicine, Imperial College London.

What did you do?

Our research project called iMAGine looks at the psychological processes contributing to maintenance of self-harm behaviour in young people, including whether aspects of ‘reward’ or positive reinforcement underlie self-harm. From the very start of the study, we’ve been collaborating with a group of six young people (17 to 25-year-olds) with and without experience of self-harm.

‘Health Research Matters’: Co-production in young people’s health research

To kick off the Autumn series of our ‘Health Research Matters’ lunchtime seminar series, we brought together two speakers to share their experience of co-production with young people:

  • Dr Christina Atchison, talked about ‘Adolescents 360‘, a project that used human-centred design to co-produce context-specific reproductive health programming initiatives with adolescents in Ethiopia, Nigeria and Tanzania; and
  • Matt Walsham, from Partnership for Young London, who shared insight into working with young people on research across the voluntary sector

In case you weren’t able to attend, and as a reminder for those who did, here are some of the key take home messages from the two presentations, followed by the main discussion points and links to further reading.

Public involvement in prematurity research at Imperial Women’s Health Research Centre

This entry is part 3 of 5 in the series PPI Awards: Round 4 Reports

In conversation with: Lynne Sykes, Clinical Lecturer; Rachel Akers, Senior Research Midwife; and Malko Adan, Senior Research Midwife

Working within: Prematurity Research, Women’s Health Research Centre at Imperial Institute of Reproductive & Developmental Biology

What did you do?

We held face-to-face meetings with patients who took part in our preterm research project meetings to garner acceptability and opinions for new research techniques. We chose this method because it allowed our patients to share their experiences with others and catch up with the research team, who they saw for a large amount of time during their pregnancy.