The importance of public and patient involvement (PPI) in research is now accepted as a positive development as well as leading to the design of more successful research studies. I was appointed as one of the first Lay members of the BHF Clinical Studies Committee from 2016-19. During my time on the committee we saw a sea change in the research applicants’ approach to PPI. Rather than an afterthought, research applicants began to proactively seek out patients to work with in equal partnership at all stages of the development of their research.
By starting with patients from the beginning involving patients in all the stages of a research project, it is more likely that the research study will answer questions that are important to patients rather than the research being an intellectual exercise with minimal benefits to the patient community and society. This will mean researchers will need to seek out patients with a lived experience of the condition being researched. This may well allow the researchers to design the study from potentially a different perspective making the research more relevant to patients and the public and may even address as yet an unmet need of a particular group of patients. This puts patients right at the heart of the research.
Many patients value the quality of their life as one of the most important outcomes of a new treatment not just their overall survival. A patient living with refractory angina may judge a reduction in the severity and frequency of their angina is more important than their ability to exercise for a slightly longer time. Patients will be able consider if the side effects of a treatment are acceptable. Patients can help design a research trial which takes into account how it feels to be a patient and whether a study is too arduous for a particular group of patients to take part in. Patients can identify possible barriers to recruitment and help avert a high drop out rate by avoiding unrealistic expectations on the group of patients being studied. Patients are invaluable in helping to write patient facing documents. The explanation of research in plain English allows patients to make a truly informed choice about taking part in any proposed study. Patients can also be reliable allies in the dissemination of research findings through various digital media platforms as well as through support groups and word of mouth.
Finally by working in an equal partnership with patients researchers are maintaining the dignity and respect of those patients who freely give their time, knowledge and expertise, who consent to sometimes uncomfortable and stressful procedures or treatments with some even small risk to themselves for research purposes . PPI is about research being carried out ‘with’ and ‘ by’ patients rather than ‘to’ ‘about’ or for them. Prof Dame Sally Davies who established the National Institute of Healthcare Research sums up why the public and patients are important stakeholders in the research process;
‘ No matter how complicated the research, or brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost effective as well’
Sarah Brown – Lay member BHF Clinical Studies Committee 2016-19 and BHF Big Beat Challenge Public Panel Member