Case Study: Dr John Bradley

Dr John Bradley

Dr John Bradley

Director, NIHR Cambridge Biomedical Research Centre

“There’s no doubt that you can do laboratory-based research without patient and public involvement. But, if you do involve people, and you involve them early, you will reap the benefits as a research programme evolves.”

NIHR Senior Investigator John Bradley has undertaken many different types of study, but his research is primarily laboratory-based, looking at the cardiovascular aspects of kidney disease. His experience suggests that most people, both healthy volunteers and patients, want to support health research and want a greater involvement than simply participating as subjects. Dr Bradley has found that patient and public involvement (PPI) in his work has positively influenced the development of questions and outcomes, has enhanced recruitment and increased the retention of participants in trials.

In his research on kidney care, Dr Bradley chaired the Advisory Board for a Kidney Research UK study looking at different interventions within primary care that would help doctors and patients achieve better blood control. Patients influenced the study design and helped identify the interventions to test. They attended the interview for the award with the funding body, emphasising the research team’s aspiration to conduct research with patients, for patients. They held the researchers to account, monitoring progress and acted as critical friends. This study led to the Engaging with Quality in Primary Care (ENABLE) study coordinated by Kidney Research UK and funded by the Health Foundation, for which a patient advisory group contributed to all parts of the study process, such as the development of patient materials, practitioner training and advice and evaluation tools.

It is important to note, suggests Dr Bradley, that the nature and design of patient and public involvement inevitably varies between studies. It will look very different in a study examining the direct care of patients to a laboratory-based study. However it still has applications in both settings. At the Cambridge Biomedical Research Centre (BRC), where the work is divided into themes, there is an expectation that PPI will be on the agenda for any key meetings with theme leads. If patients and the public are appropriately involved by theme leads, Dr Bradley suggests, it is more likely that the value and application of PPI will filter down into the research teams. The BRC has set up a panel of around 40 people who provide feedback on the BRC’s research proposals and patient information and consent forms, making sure that materials are appropriate and terminology accessible.

A children’s research board has been established at the NIHR/Wellcome Trust Cambridge Clinical Research Facility (CRF) for Experimental Medicine which supports the work of the BRC, where paediatric studies are carried out, many involving blood sampling. Children who had been or were likely to be involved in studies were invited to spend a morning reviewing the facilities at the CRF and made suggestions to help researchers provide an environment where children would like to spend time and participate in research. Dr Bradley emphasises that PPI is essential for the development of gene and DNA research to ensure the public understands the issues around DNA collection and analysis. As with research requiring blood or tissue samples, patients are at the heart of it. They need to be involved to help find ways to ensure all of the issues are fully considered, explain the processes and address the ethical implications.

A major challenge for PPI, according to Dr Bradley, is convincing all types of researchers of its importance. There is no doubt that it requires planning, time and effort. However, in a world where researchers already have significant levels of bureaucracy to manage, Dr Bradley believes that PPI will ultimately help rather than hinder the process.

“You might think that because you’re studying a molecular signalling pathway, PPI is not important, but it is still about patients. PPI is essential for genomic research, to ensure all of the concerns are fully understood and ethical issues are properly addressed.”

NIHR Cambridge Biomedical Research Centre: www.cambridge-brc.org.uk/public Loud F (2012) INVOLVE Conference presentation about public involvement in the ENABLE study: Patient involvement in quality improvement

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