Search all of the Society for Participatory Medicine website:Search

Update 1 June 3: if you’re not familiar with the Open Access issue, start with Peter Schmidt’s comment below, citing a 2008 journal article on the issue, by a former editor of the British Medical Journal.
___________ 

Update 2 June 3 @9:50 AM PST: we are only 354 votes short of the original goal of 25,000 votes for the petition. With your help we’ll pass the threshold today
___________ 

Guest post from Cameron Neylon. Cameron is the incoming Advocacy Director at PLoS and a biophysics researcher based in the UK.

The US Executive branch has been taking a close look at the issues of public access to publicly funded research for some time now [aka “OA,” Open Access]. There is a short term opportunity to influence the federal government to take real action on delivering public access to the published outputs of publicly funded research.

We’re asking for about five minutes of your time to sign the Access2Research petition on the White House site.

Sign the petition to require free access over the Internet to journal articles arising from taxpayer-funded research. This will require you to create an account at the White House petition website, confirm the account by clicking on a link in your email, and then sign the petition itself.

25,000 signatures in 30 days gets an official Administration response. We want to hit that number – blow it out of the water – to escalate this issue inside the White House. We believe the idea of requiring free access has support but is stuck. This could well be the event that gets it through.

As a patient or patient advocate you may be wondering whether this petition is really for you. After all the NIH mandate does a pretty good job of getting you access to the research you need.

There are three good reasons why this petition still 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 theNational 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 States. 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.

 

Please consider supporting the Society by joining us today! Thank you.

Donate