In a well written letter posted on
a PWP Linda Morgan proposes
"..... engage and involve people living with Parkinson’s as true collaborators and partners within each step of the research decision-making – from determining priorities,
to the development of study design and protocols, to dissemination of results."
Linda Morgan: Do you propose that if someone is an expert on feeling bad, it follows that they are also an expert on how to feel good?
Each Step! This level of involvement will cost a lot. Researchers will take time from their research to explain, report, etc. Do the PWP's pay their own travel and work for free, or do they get a stipend? Who will vet the PWP participants and review the requested collaborations. If carefully done, this activity could consume upwards of 25% of the PD research budget.
Perhaps we should insist on clinical trials to determine
1. If oversight by motivated (afflicted) amateurs is useful oversight, and
2. If this kind of oversight provides more benefit than it detracts from the PD research program.
If this proposal is intended as a solution, then I ask: What is the problem? Is a significant portion (say upwards of 25%) of the PD research budget being squandered? Will this kind of oversight be effective in restoring enough of the squandered money (after expenses) to PD research to provide a net improvement in the lives of PD sufferers?How will we measure the success?
Perhaps I think too narrowly. Please enlighten me:
1. What are the significant problems with PD research?
2. What proportion of the PD research budget is squandered because of these problems?
3. What is the evidence that the involvement of amateurs will significantly improve the research productivity and/or efficacy?
4. Can we quantify the improvement, say by estimating the percent of squandered money that will be restored to productive use?
The Grinch, aka fwes