Humans of health research

Dr Amit Kaura is an Honorary Clinical Lecturer in the National Heart and Lung Institute at Imperial College London. He is also an Academic Cardiology Registrar at Imperial College Healthcare NHS Trust. His research focuses on using health data to glean new insights on how to treat heart diseases.

 “Despite major advances in cardiovascular disease and management it still remains one of the largest killers in the UK and worldwide. We have a wealth of data in the NHS and we formed a group to explore how this data could be used to learn more about cardiovascular disease.

“I am part of the NIHR Health Informatics Collaborative (NIHR-HIC) led by Imperial College Healthcare NHS Trust and Imperial College London. It was established for the sharing of anonymised NHS and patient data for research purposes. It is funded by the NIHR Imperial Biomedical Research Centre.

 “One of the projects that I led on was looking at data from 250,000 patients who had a suspected heart attack. Our analysis showed that a small rise in a protein in the blood linked to heart muscle damage, called troponin, was associated with an increased risk of death in all age groups, even for those patients who did not have a heart attack. 

"This research brought to attention for the first time that if you do have a small rise of troponin before a heart attack, we should intervene early and not adopt a watch and wait approach for these patients. 

"As a result of this data we have identified an at risk population and we are now designing a trial to see if there are benefits to prescribing these patients a statin and performing a heart scan to help bring down their risk of death.

“This is an example of how data is helping to identify new groups of patients where there still needs to be some attention paid to them to help their survival. 

“The importance of having patients involved in projects of this nature is that we’re dealing with patient records data that is sensitive.

“People need to understand that there are plenty of steps taken in terms of patient confidentiality. All the data is completely anonymised when looked at by researchers and it’s important to instil confidence in people that their data is protected. 

"That is why it is important to have patients like William Taylor involved in our work to hear their concerns about the approach you’re taking and how we can address them.

“I have been in focus meetings with William and others and learnt about the issues they are facing with their health. It is important to ensure that we’re answering the right research questions and that we’re meeting their needs.

“What I enjoy most about research is the opportunity to work collaboratively not just within your own institution but with others, all with the collective aim to improve patient care and outcomes.”

William Taylor works with Dr Amit Kaura as a patient partner on his research.

“I first got into research in 2014 when I had a stent - a metal or plastic tube inserted into the heart to keep arteries open – put in. 

“I had no symptoms of heart disease and I only went to my GP as I wanted to come off statins.

“I read a report on a trial in America that found people with calcium levels below 30 didn’t need to take statins. I went to my GP to request a calcium test and I was allowed one as my brother had a history of serious heart problems.

“From the calcium test it was determined that I had a severe blockage in my right artery and when I went to see the consultant at Hammersmith Hospital I was offered a place on the Orbita trial, which explored the placebo effects of heart stents on patients with stable angina - a common condition in adults in which patients feel chest pain as a result of over-exertion due to restricted blood flow to the heart.

“I was then asked to contribute to a follow up trial - Orbita 2 - by looking at patient facing documentation and giving feedback on how to get people onto the trial.

“I decided to be part of these studies to give something back. I have a daughter and heart disease is hereditary so it’s important that more research is done in this area like Dr Kaura’s.

“As a patient representative on research projects, I am able to give different perspectives and ask questions that make medical practitioners think about how they’re going about their work.

“In any occupation you talk to your colleagues and often you’re in a bubble and using jargon. It is very easy for medical professionals to talk to patients in jargon and what the focus groups do is stop that. 

"We help the doctors communicate to patients in a simple way, so the patients buy into the work that the doctors are doing. I find this aspect really rewarding. 

“Being part of research has led me to be better educated about my heart condition which allows me to take better care of myself. I also hope that I have contributed and helped doctors with their research so that others can benefit too.”

Professor Marta Boffito is a Consultant Physician at Chelsea and Westminster Hospital NHS Foundation Trust and Professor of Practice at Imperial College London. She is also the Clinical Research Lead of the Clinical Research Facility and HIV Service Lead at Chelsea and Westminster Hospital, where she runs numerous research projects and clinical trials. 

“After completing medical school I was interested in infectious diseases like HIV/AIDS. During the 1980’s this disease was deadly and people were dying on a large scale.  

“I first worked in San Francisco on anti-retroviral drug development for HIV and I did my PhD in clinical pharmacology. It has been incredible to be part of the development of a portfolio of drugs that required research and expertise to get us to a point where HIV is no longer deadly. I saw people who were dying of AIDS being enrolled in trials and getting better.

“The COVID-19 pandemic proved challenging as many trials stopped and the focus was on tackling this virus. However, we have ensured that our HIV patients continue to receive their treatments and kept clinical trials going during the lockdowns, so patients weren’t left behind. This involved shipping drugs to patients’ addresses and we modified the way we did trials, such as through virtual consultations. 

“The response to the COVID-19 research call has been amazing and people dropped everything to take part in trials or to do trials and I saw that same spirit during the height of the HIV/AIDs pandemic. I hope this spirit continues because we still need to find cures for cancers and other diseases, and we need the public to take part and contribute.”