4 posts tagged “Patients as Partners”

Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Posted April 18th, 2014 by

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.


Patients as Partners: The WHYSTOP Scale questionnaire results

Posted April 4th, 2014 by

We’re really excited to launch a new series here on the blog called Patients as Partners. The series will highlight the results and feedback that PatientsLikeMe members give on questionnaires from our Open Research Exchange (ORE) platform.

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.

So to kick the series off, we have results from the WHYSTOP Scale, which measures how diabetes can impact appetite and how people decide when they’re done with a meal. Back in September, we launched this as one of the first-ever questionnaires on ORE with our research partner William Polonsky, Ph.D., CDE, from the Behavioral Diabetes Institute and University of California, San Diego. More than 700 type 2 diabetes community members added their voices, and all of the answers and feedback shaped and influenced the health measure to make it the best possible. (Shout out and thank you to all those that participated!) Check out the WHYSTOP survey results and keep an eye out for more ORE questionnaire results coming up as we continue our Patients as Partners series.