The fight against ALS has never been a well-oiled machine. Everyone knows that it would be more effective if people worked together better.
We love the word "partnership." That gives us visions of people and organizations finally working together.
The word "collaboration" makes us so happy. At last people are sharing to help everyone advance the science.
Then we find out, often much later or by accident, that a "partnership" came with a big money contract. And next we discover that people in a "collaboration" were paid for the arrangement.
Those magic words that give us visions of people doing the right things for the right reasons have blinded us to pertinent business arrangements.
There's nothing wrong with a mutually beneficial business deal, but people need to know who is being paid by whom to do what in the fight against ALS. We donors and advocates hear the magic words and assume things that may well not be true. Scientists and not-for-profit employees participate in meetings where there is not a clear picture of who is being paid by whom to be there and to "partner" and to "collaborate."
Obligations for transparency go far beyond annual reports and tax forms. People need to understand who is being paid by whom to do what. Every time that the word "partnership" is used in an arrangement where there is an exchange of money, we have a right to know that. Every time a "collaboration" is a business arrangement, we need to know that. Whenever people are paid to participate in a meeting, that should be on the table. It's material information to understand an individual's or an organization's perspective.
We need to cut the blindfolds on "partnerships" and "collaborations."