access2research - Why Access2Research Matters For Patients

“... There are three good reasons why this petition... matters for patients and their supporters. [1] There is much health research carried out beyond the NIH by other US Federal agencies. A lot of the basic research on biology relevant to disease is funded by the National Science Foundation. Much of the important structural work that underpins drug design and optimisation is carried out at National Laboratories funded by the Department Of Energy. Indeed, the Human Genome Project began in the DoE. And a lot of the most important research lies between these different areas, funded by multiple agencies. A global mandate will ensure that the research critical for the health of you or your family doesn’t slip between the policy cracks between agencies.  [2] Patients are the exemplar par excellence of the empowered citizen. If everyone is a patient, everyone is also concerned about the other big issues facing us today that can be informed by access to scientific information: energy; the environment; and the creation of jobs. Patients as a group have an opportunity to show the rest of the community what can be achieved when they are able to engage with high quality research information.  [3]  Research is a global enterprise. The majority of research relevant to your health is done outside the United Statues. Although the petition is a US action it will greatly help open access advocates to build momentum globally that means better access to all research, regardless of where it was carried out. The UK science minister recently described the need for coordinated global action as a major challenge in expanding access. A strong message from US patient advocates will make it easier to achieve global access.  But the real reason the petition is a patient issue is that this is just one round. This action is important for the NIH mandate in two ways. First by taking the policy ratchet one step further we protect the NIH mandate from any future actions that seek to roll it back, such as the Research Works Act. Secondly by demonstrating the power and depth of public opinion we are in a much better position to take the argument for public access to policy makers globally. We won’t win that in this round, but by winning this round we put ourselves in a much stronger position for the next one.”