Excerpts:
.... Involving patients and the public as partners in medical research - from deciding what to study to influencing how results are used - is an emerging force. For some, the approach is based on common sense and justice. Others, such as the chief medical officer for England, Sally Davies, feel that the advice of patients and the public “invariably makes studies more effective, more credible and often more cost efficient”....
..... PPI is a prerequisite for much UK government research funding and it is spreading among funders, health-care organizations and charities. The James Lind Alliance (JLA).... enables patients, carers and clinicians to agree on what research matters most. It explicitly excludes the pharmaceutical industry and pure researchers ......
...... This international growth of PPI is rightly paralleled by unease at the paucity of evidence for its impact.....
...... And the evidence there is, including the findings that PPI improves recruitment to studies and changes what is researched is weak. As Simon Denegri, the United Kingdom's first national director for public participation and engagement in research, put it: “The evidence-base for PPI's impact is meagre, patchy and largely observational.”.....
..... A key element of reporting PPI is to make clear who was involved, in part to allow us to gauge when it matters to distinguish between public and patient input......
...... We must also probe whether PPI is valuable for all research types. Will it ever, for example, have a place in basic science? Anecdotal evidence suggests that it might, in part because patients push for research into causes. The UK Alzheimer's Society, the only funder that works with people with dementia and their carers to select research projects, backs work from the lab bench to the clinic. And priorities in sight-loss research, identified through the JLA approach, revealed patient interest in causation, as well as treatments using stem cells and gene therapy......
...... One of the knottiest problems in PPI is how to best weigh up anecdotes and evidence. How are the patients involved chosen? Do they bring more than their own views? Are diverse voices heard, or just those that are loudest? ....... Ignore such questions, and PPI might unwittingly perpetuate power imbalances......
...... The most well-meaning approaches can simply extend input from educated, middle-class professionals to input from educated, middle-class patients.......
....... Yet we must also avoid double standards. Just as people will always want the best researchers or clinicians, we must not exclude the most informed or articulate patients........
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