Research is a collaborative effort, and a clinical trial particularly so. From the PhD student to the principal investigator, from the lab technician to the research nurse, from the trial manager to the clinical lead – everyone influences the success of a study. There is, of course, one group of people without whom no clinical trial could take place: the patients and public who participate in studies. However, if research teams build public involvement into their work, patients and the general public can be more than participants in a trial – they can be collaborators too.
PPI in research is about working together
Patient and public involvement in research (often shortened to PPI) is when “research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. There are lots of ways for the public to get involved in research, and they can have their say at all stages, from setting research topics and helping collect data, to interpreting results.
PPI improves research
One of the most important reasons for involving patients in research is that through their lived experience of a condition, patients can provide expertise from which a research team can benefit. They can tell us their research priorities based on the aspects of their lives that are the hardest to manage and how to improve a trial protocol by explaining a day in the life of a patient. By telling us how to write good patient facing materials that communicate in a patient friendly way PPI can in turn improve recruitment and retention.
Taking recruitment and retention rate as an example, a 2017 study looking at recruitment success across 151 randomized controlled trials funded by the UKs Health Technology Assessment Program found that only 56% of trials recruited the target number of participants, and the average retention rate was 89%. There is clearly some work to do, and research is beginning to show how patients can be key to improving recruitment and retention rates in health and social care research.
Patients can be key to improving recruitment and retention rates in health and social care research
In a rare disease study started in 2014, researchers were worried they would struggle to recruit participants because the treatment they were testing would have limited beneficial effects for trial participants (it would likely be of greater benefit for those earlier on in disease progression). The researchers consulted with a patient group who told them that if they could communicate that taking part in the trial would prevent younger people experiencing the severity of symptoms the adults had endured, that altruistic appeal would be a big motivation for taking part.
In another of our studies at UCLH’s Biomedical Research Centre, a research team looking at dementia risk factors for people of South Asian ethnicity met with a group of elderly members of the local South Asian community. They learned that many of the people they spoke to did not recognize dementia as an illness that affected the brain, and in some cases there was stigma attached to dementia symptoms. This finding prompted the team to change the type of statistical analysis that would be carried out on the data they had collected on time to diagnosis. The team knew that delay in diagnosis would be impacted by a delay in seeking help, and this needed to be factored into the analysis.
PPI motivates research teams
These are just some examples of how patients and the public can offer insights that improve research, but there are other reasons to start talking to patients and the public about your work. The more we talk to the public about scientific research, the greater the trust we build. Not only this, but working with the public is also a great motivation for researchers – many scientists who spend much of their time in the lab or at computers can get a huge boost from meeting with the beneficiaries of their research and seeing how their work is positively impacting lives.
If you want to learn more about public involvement, a great place to start is the NIHR’s Involve website. Many health charities also have great public involvement resources. For UK based scientists, if you are part of a university, you may also be part of one of the NIHR’s 20 Biomedical Research Centers, which all have a dedicated PPI team.
As we celebrate Clinical Trials Day, it’s a great time to be reminded that the people you are trying to help also want to help you.