Open access: remember the patients | The BMJ
peter.suber's bookmarks 2019-04-21
"A growing number of us patients are experiencing a comparable frustration at having newly minted knowledge kept from us—for financial reasons. While I fully understand the economic needs of the people who create and publish knowledge, I implore all of them—all of you—to “remember the patients.” In your deliberations about policy, please remember the needs of the people for whose ultimate benefit your work exists. And modify the financial structure of this work, to prioritise not just creating the knowledge but also delivering it to those in medical need.
Families coping with desperate illness hope that everyone in the healing professions will do everything in their power to bring the newest findings to the point of need. Little do they know that those parties sometimes have other priorities. You should see the look of fear, even outrage, when they learn of this.
If I’m suffering, and remedies are developed, what needs should outweigh mine and keep those remedies hidden? If my baby has a potentially fatal disease, and useful knowledge has been developed, what needs should outweigh ours? Or, if my baby’s condition is not fatal but potentially disabling, and new knowledge has come to light, what needs should outweigh ours to keep that hidden?..."