As Research Network leader at the UK Alzheimer's Society, I can vouch that the value of the biomedical research community engaging with patients and carers acts both ways (Nature 487, 7; 2012).
Research supported by the Public and Patient Involvement programme of the UK Alzheimer's Society couples scientific and clinical expertise with the insight of people who are affected directly or indirectly by dementia (www.alzheimers.org.uk/researchnetwork).These people convey their research priorities to us; we offer them an equal presence and vote at funding panels.
For every grant we commission, we assign three carers, former carers or people with dementia to provide an informal monitoring group who visit the researchers once or twice a year. These volunteers encourage the research team by sharing their own experiences, and help us to improve our protocol, patient communication and recruitment methods.
The patients and carers learn more about the complexity, challenges and timescales of biomedical research. The researchers come to realize that dementia is about much more than memory loss, and that sufferers are still human beings.
This two-way communication motivates patients and carers to fund-raise and campaign for the Alzheimer's Society. Since 1999, we have awarded more than £15 million (US$24 million) to these research partnerships.