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, Organ Transplants, Patient Experiences, 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
Some of us might give our significant others and family members flowers and chocolates on Valentine’s Day, but did you know that February 14th is also National Donor Day? That’s right – in the spirit of love and giving, today is all about celebrating past donors and raising awareness for the five points of life: organs, tissues, marrow, platelets and blood.
There is an urgent need for donors in the world today. According to the U.S. Department of Health and Human Services…1
- …every 10 minutes, a patient is added to the organ donor waiting list
- …every day, an average of 18 patients die due to a shortage of available organs
- …in 2010, there were 2.5 million deaths in the U.S. alone – imagine if all of them were organ donors, because…
- …right now, there are more than enough people waiting for an organ to fill a large football stadium twice over
So, how can you help? You can register to become an organ or tissue donor, or you can find a local blood or platelet drive and register for the Be The Match national bone marrow registry.
If you have received an organ donation – or are waiting for one – you can reach out to the transplant community at PatientsLikeMe and connect with members who have received heart, kidney, liver, lung or pancreas transplants, among many other types. You can also check out the extensive PatientVoice report on what life is like after a transplant and share your experience in the PatientsLikeMe transplant forums.
- Filed Under: Patient Experiences
- Tags: Be The Match, blood, community, day, Donor, heart, kidney, liver, lungs, marrow, national, National Donor Day, organ donation, Organ Transplants, organs, pancreas, PatientsLikeMe, platelets, tissue, transplant, U.S. Department of Health and Human Services