‘This was my way of giving back’: Hampshire woman joins thousands taking part in health research
A Hampshire woman who says her agonising swelling condition has dramatically improved after taking part in a health study has urged others to take part in research.
Odiham’s Janie Allen spoke as new figures show more than 38,000 participants took part in health and care research in Hampshire last year, according to new data published by the National Institute for Health and Care Research (NIHR).
She took part in a study into hereditary angioedema (HAE) a genetic condition inherited from her mother that causes severe, painful swelling in the face, hands, feet and intestines.
HAE is caused by a missing or faulty blood protein. Without enough of this regulatory protein, the body makes too much of another chemical that makes blood vessels leak, leading to sudden and severe swelling. The condition can also affect the throat, a complication that claimed the life of Janie's grandad, Arthur Hoskison, who died in 1938 aged 32.
She is now calling on residents to join around 31,000 Hampshire people who have signed up to Be Part of Research, an online service where people register to be contacted about taking part in studies into topics that interest them, for example diabetes and stroke.
Janie’s story
Retired biology teacher Janie, 61, said: “I first noticed symptoms when I was about 11, but wasn’t formally diagnosed until I was 36. For years I’ve managed the agony of swelling, particularly in my intestines. It could be so painful. I was often taking strong prescription painkillers, with several hospital visits for tests trying to find out what it was.
“Once diagnosed I took the standard medication for the condition, which helped, but I would still get minor swelling and every couple of years, a full blown attack that would be agony.”
A turning point came in 2025 when Janie was offered the chance to join a clinical trial at Frimley Park Hospital, Surrey, testing a new tablet to prevent the painful and unpredictable swelling caused by HAE.
Janie, who has been with partner Robin for 19 years, said: “I jumped at the chance. I've benefitted from previous medical research, so this was my way of giving back. I also knew the new medication specifically targeted the defect causing my HAE, offering me hope for better control.”
The trial required Janie to take one daily tablet, alongside monthly hospital check-ups. She didn’t know if she was receiving the medication or a dummy drug, so researchers could compare the results of both.
She finished the trial in January and moved into the next phase where she is guaranteed to receive the new medication so researchers can monitor its long-term safety and effectiveness.
She said: “My standard medication was good, but I still suffered from minor attacks and a full-blown crisis every couple of years. I never realised how exhausted the frequent flare-ups made me. When you live with a chronic illness for so long, you forget what ‘normal’ feels like.
“Since starting the trial I’ve had no flare-ups, so no swelling and no pain. It’s been amazing. I also have so much more energy that I can run, cycle and train consistently.
“There were so many things I couldn’t do because my condition was never totally under control. But this has now changed. This year I even achieved a lifelong dream by completing a marathon over the South Downs - something I once thought was completely impossible. For the first time in my life, my body is in a state of health and consistency.”
More than 38,000 participants took part in research supported by the NIHR in Hampshire in the 12 months from 1 April 2025.
The NIHR helped health and care organisations recruit 878,698 volunteers for 4,536 recruiting studies across England in that period. This brings the total number of enrolments in research studies across England to more than 7.4 million since April 2020.
Other studies that have recruited participants in Hampshire in 2025/26 include:
a study investigating whether screening a newborn’s genetic sequence helps find and treat about 200 rare conditions early
an online survey tracking the health and wellbeing of people living with cancer to discover what community support they need most
a trial to screen people with long-term heartburn to catch early signs of oesophageal cancer. The participant swallows a small capsule on a string which dissolves in the stomach to release a tiny sponge. As it is pulled back up, it gathers cell samples from the food pipe lining to detect pre-cancerous changes
a study to find out if informing asthma patients about the carbon footprint of different inhalers influences which they choose
Research leaders in Hampshire welcomed the number of participants who took part in research last year.
Alex Merryweather, Head of Research Operations, Isle of Wight NHS Trust and Portsmouth Hospitals University NHS Trust, said: “It is fantastic to see so many people across Hampshire choosing to take part in health and care research. Every participant plays an important role in helping us develop new treatments, improve services and build the evidence that shapes future patient care. I would like to thank everyone who volunteered their time, as well as the dedicated research teams who support and deliver these studies.”
Natasha Chigbo, Associate Director of Research and Development, Hampshire Hospitals NHS Foundation Trust, said: “The past year has been a remarkable demonstration of the dedication, commitment and collaboration across our teams. Colleagues have worked tirelessly to support and deliver high quality research, enabling more people than ever to take part in clinical trials and research studies. We would also like to extend our sincere thanks to all the participants who generously gave their time and shared their experiences by taking part in research. Their contribution is invaluable. Together, these collective efforts strengthen the evidence needed to improve health and care, while highlighting the vital role that patients and communities play in shaping the future of healthcare through research.”
Karen Underwood, Director of Research & Development at University Hospital Southampton NHS Foundation Trust, said: “We are incredibly grateful to every person who volunteers to take part in health and care research. Participants like Janie are helping us develop the treatments, technologies and approaches that will improve care for future generations, while giving researchers the evidence needed to tackle some of the biggest challenges facing healthcare. Every study relies on people willing to get involved, and their contribution is making a real difference to the future health of our communities.”
Prof Saul Faust, Health and Care Director at NIHR South Central Regional Research Delivery Network, which supports health and care providers to deliver studies, said: “We are incredibly proud of the people in Hampshire who have stepped up to be part of the solution to some of our biggest health challenges. It’s great to know that Hampshire’s participants are part of a massive movement to unlock better treatments for cancer, stroke and many other diseases right here on our doorstep.”
Participating in health research helps develop new treatments, improve the NHS, public health and social care and save lives.
Studies take place in hospitals, the community and the home, for example answering a questionnaire about a health condition. People without the condition being studied can also take part so results can be compared to those with a medical condition.
People aged 18 and over can search for and sign up to be contacted about studies that interest them at bepartofresearch.uk.