The patients bringing lived experience to research teams

In 2015, when the Cambridge Clinical Trials Unit launched its Patient Led Research Hub (PLRH) it noticed that patients were interested in research topics that weren’t covered by most published studies. “Most patient priorities were around quality of life and symptom management, whereas a lot of funded projects were about interventions and drugs,” says Laura Cowley, research lead at PLRH.A similar discrepancy had come up in the Netherlands in 2006, when the Dutch Burns Foundation invited patients to help set their research agenda.1 It learnt that this group’s main concern was itching, which wasn’t a research priority at that time. “It’s such a good example to show that people with lived experience ask very different questions,” says Sanne Steenhuisen, programme secretary of the participation and citizen science initiative at the Netherlands Organisation for Health Research and Development (ZonMW).Many organisations and patient groups around the world, including PLRH and ZonMW, are…
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