Daffodils, ribbons, sponsored runs, and elegant balls. Peer pressure appeals to a higher nature and a little tugging at the heartstrings. But, its not all innocent fun, youth, and glamour. When people give to medical charities, they believe money is going to relieve the suffering of others. That little old lady who puts a few pence in the collection box hopes it may help someone less fortunate. Relatives give to help ease the suffering of other patients. A legacy is to help a life coming afterwards.
It was a lovely dinner, and we each paid our own way, but towards the end, my friends from a high profile medical charity asked me some hard questions. What did I think charities could expect for their money? Having seen the mercenary approach of universities who care only about their research income, the insensitivity of some researchers ( a few) whose research grants fund comfortable conference hotels in far off cities, and the embarrassment of seeing incomplete or incompetent studies, my opinion was more forthright than they may have anticipated.
Research is only useful if it is shared. Dissemination of academic research means peer reviewed publication. And, publication is the least one might expect with such financial investment. An award should be conditional on a dissemination strategy with an annual update. But, charitable bodies can encourage process markers along the way. They may insist the research protocol be lodged in an open access research database or as online publication. Researchers should, as a minimum, produce a regular annual report and I recommended an annual research conference, funded by the charity, where all grant recipients would be required to present their work in progress. And, with every manuscript accepted, they should send a copy of the paper to the charity press office so they can coordinate media exposure with the journal when it is published.
A charity is also a business. Researchers must appreciate that their funding was only made available because someone knew the charity existed. It needs to have a profile and demonstrate achievements to attract further funding. Researchers who have benefitted have a responsibility to speak to the press if asked and supply a lay summary for the charity in house publication. A charity too has a duty of guardianship, their responsibility does not end when the cheque is written and they too should be accountable.
Researchers collect the data, they don’t have moral ownership. They owe a debt to donors who give in good faith and an ethical duty to those who participate in their research. Most lay people would be surprised at the dissonance between their perception and the reality of medical research. They give for the good of humanity and expect researchers to share their altruism. A bursary, grant, or fellowship is not a gift. It carries responsibility.
Domhnall MacAuley is primary care editor, BMJ