PatientsLikeMe

Free Up Research! On Our Way to 25,000 Signatures

Have you heard about the petition launched to the White House asking for all federally funded research to be freely accessible over the Internet? We’ve signed it and here’s why…

Today, government-funded research (that’s research paid for with your tax dollars) is often something you can have access to in published scientific journals, but for a charge.  The petition is a call to action for the current Administration to make this research open to anyone who wants to read it — study participants, other patients, researchers, healthcare providers, industry, students, or anyone at all.

"We the People" Allows You to Send Petitions Directly to the White House

Under the Administration’s new “We the People” policy, if the petition gets over 25,000 signatures within 30 days, the White House will issue a response. At the end of day two, there are already over 10,000 signatures! (Anyone can sign, even those internationally.)  You can read more about this open access movement and see what others are saying with the twitter hashtag #OAMonday.

Simply put, we believe this campaign represents the power of Openness. At PatientsLikeMe we’ve long believed in the power of open access and take steps to ensure many of our publications such as our recent epilepsy user survey, our lithium study in Nature Biotechnology, and most of our other published research is all freely available without needing to be an academic researcher. Why? Because patients like you want to read the most up-to-date scientific research and we believe you have the right to do so without impediment.

So, we’ve signed the petition.  Have you?


The buzz around the office…

“In the UK, there’s a saying that e-patients have about their healthcare decisions: ‘Nothing about me, without me.’ There’s no better example of the disconnect between academic medicine and patients than a research study *about* patients that they can not read.”
– Paul Wicks, PhD, R&D Director, PatientsLikeMe (Signature #817)

“We call on patients, caregivers, family, and friends to sign this petition and send a clear message that life-saving research paid for with tax dollars is a public good and should be shared in the same spirit with which altruistic patients like you sacrificed their time, wellbeing, and sometimes even their lives.”
– Ben Heywood, President and Co-founder, PatientsLikeMe (Signature #4473)

“Some issues transcend politics and this is one of those.  When you are sitting in a hospital trying to make a decision about yourself or a loved one, we believe you should not have to pay to access government-funded research results that could help you.  Science is not done for universities or for scientists; it is done to better our understanding of medicine and disease to help you the patient.  This research belongs to the public, to the patients who made it happen by volunteering and funding it with their tax dollars.”
–  Jamie Heywood, Co-founder, PatientsLikeMe (Signature #11646)

5 comments

  • Really pleased that you have posted about this important issue.

    I also appreciate you sharing the thoughts of Paul, Ben & Jamie.

    I’ve posted about Open Access (OA) on the ALS Forum here a few times and it pleases me no end to see OA being mentioned on the PLM blog.

    “Simply put, we believe this campaign represents the power of Openness” Thank you !!

  • Couldn’t have said this better….For patients – for people – open works. Closed doesn’t. Thank you for helping to give patients a strong voice in the call for open access to taxpayer funded research!

  • Having been a clinical trial patient myself, I know what a slap in the face it is to go in search of data so important to me personally only to discover they want me to pay to read it. I risked my life for that?

    Thanks for posting this. I’m spreading the word.

  • Jasmine,

    This is a beautiful piece of writing and very insightful.
    It is a wonderful discovery to find someone that understands you, and I was surprised to find that my bf having type 1 diabetes helps him to understand my MS and vice versa.

    People that have suffered loss of function, or share the experience of having chronic illness, or the uncertainty of symptoms and progression can realte to one another and be compassionate to one another.

    Whereas people that have always had reliable health and function rarely trul can.

    Thanks for writing this. It is excellently written.

    Fortywinks.