6 December 2018
Patients who took part in several research projects for COPD received a very welcome invitation when Trust researchers invited them back to the Trust to hear the outcome of the research studies they took part in. Researchers were also able to hear directly from patients and carers on their experiences of taking part in research.
Professor Pallav Shah is one of the leading respiratory consultants at the Trust and his research involves the use of novel treatments in airways diseases. These range from valves or umbrellas to achieve lung volume reduction in patients with emphysema, through to the role of liquid nitrogen in regenerating the airway lining in patients with chronic bronchitis.
The event, which took place on Tuesday 13 November, was host to over 30 patients and carers and was chaired by Professor Shah, one of the leading respiratory consultants at the Trust whose research involves the use of novel treatments in airways diseases.
Professor Shah began by thanking the patients for their participation in research before providing a brief history of his work on novel lung treatments.
The LIBERATE, TRANSFORM and CELEB trials, where the lung volume is shrunk using implantable airway valves, and the RENEW and REACTION studies, employing lung coils to give spring back to the lung, were just some of the trials that were discussed and are part of a larger portfolio of studies led by Professor Shah and his team.
Dr Justin Garner, a research fellow who works with Professor Shah, organised the event as an opportunity for a two-way exchange between patients and researchers.
He said “We are very much indebted to all the patients who have contributed to the interventional COPD studies here at the hospital. Without their courage, goodwill and patience, pivotal on an understanding of what we are doing there would be no research. Their involvement is crucial. Communication is vital.
When we write information leaflets, we always seek the opinion of a lay committee to ensure we have pitched things at the right level. Conveying results, however, in clinic, focuses on their individual problems. We don’t have the opportunity to discuss with patients the overall outcome of their study, something we feel we owe them.
The feedback from this event designed to address the issue has confirmed patients’ enthusiasm to be kept informed of the results of their contribution: For example, the recent NICE approval of lung valves – almost 20 years to achieve! And of course, future developments in the field, which we hope will inspire others to participate. We plan to host this as an annual event.”
The second part of the event focused on gaining feedback from patients on their experience of taking part in research and will be used to inform how research services are delivered for future research projects undertaken by Professor Shah’s group.
Many of the patients and carers who attended the event were appreciative of the research groups efforts to feedback research results.
One patient said “I’ve taken part in research projects before and it’s always difficult to find out the results of the study. These kinds of events should be the norm for all research studies so we know what’s happening and can keep up to date with developments”
If you would like to find out more about any of the research mentioned in this story or any other research project please contact us (firstname.lastname@example.org)