February 14th isn’t just Valentine’s day, it’s also National Donor Day. Did you know there are currently around 120,000 people waiting for a life-saving organ donation in the United States today? What better time to take a look at some of the measures other countries around the world are taking in order to combat their own long donor waiting lists.
Earlier this year, France made headlines by reversing its policy on organ donations so that all citizens are automatically presumed donors upon their death unless they join an official “opt-out” registry. Before that, unless the deceased person had made it known they did not wish to donate their organs, doctors were required to consult relatives, who in almost 30% of cases refused. The “opt-out” registry has garnered about 150,000 sign-ups so far.
France isn’t the only country to take an “opt-out” stance on organ donation. Countries like Belgium and Austria have also applied similar rules, and perhaps unsurprisingly, they see extremely high organ donation rates that hover around 98% and 99%. The list of registered organ donors in the US sits at around 48% of the population.
So, let’s take a look at some facts from the American Transplant Foundation about organ donation in the United States…
What do you think about France’s new law? Share your thoughts below or join the discussion in the forum.
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Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at how confident people are in managing their own conditions. More than 1,500 members from 9 different condition communities on PatientsLikeMe took part. They worked with our research partner Ken Wallston from Vanderbilt University to make the tool the best it can be. (Thank you to everyone that participated! This is your data doing good.) Check out the PMCSMS results and keep your eyes peeled for more ORE questionnaire results as we continue the series on the blog.
What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.
- Filed Under: ALS, Crohn's Disease, Epilepsy, Idiopathic pulmonary fibrosis, Openness, Organ Transplants, Pulmonary fibrosis, Ulcerative Colitis
- Tags: ALS, amyotrophic lateral sclerosis, arthritis, as, CD, condition, Crohn's disease, Epilepsy, exchange, Idiopathic pulmonary fibrosis, IPF, Ken Wallston, Management, Medical, open, Open Research Exchange, ORE, partners, patients, Patients as Partners, PatientsLikeMe, Perceived, PF, PMCSMS, Post-Traumatic Stress Disorder, PTSD, Pulmonary fibrosis, RA, Research, rheumatoid, rheumatoid arthritis, Scale, Self, transplant, UC, ulcerative colitis, Vanderbilt University