We’ve been talking about the new PatientsLikeMe Open Research Exchange on the blog over the past few weeks, and today, we’d like to introduce another one of the pilot researchers. In case you haven’t heard, our researcher partners will be using ORE to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe members will be able to give feedback on their work, putting them – the patients – at the center of new medical research.
Tamara’s background includes more than 20 years of practice as a nephrology nurse caring for patients with chronic kidney disease. Over the past three years, her research has focused on hypertension, one of the factors prompting a rise in kidney disease.
Tamara is developing a tool that will help practitioners see how well a patient is doing at home and identify barriers in managing hypertension. There are over 6,000 PatientsLikeMe members living with hypertension, and their feedback will be responsible for helping improve the quality of Tamara’s research. PatientsLikeMe members can give their feedback right to Tamara. They’ll be helping her create a better tool that can improve treatment for everyone living with hypertension.
We’ll be sending out invites over the next couple of weeks, so if you’re living with hypertension and want to give your feedback on Tamara’s tool, simply create a PatientsLikeMe profile and we’ll take care of the rest. If you’re already a member, sign into your profile and we’ll be sure to send you an invitation.
You’ve probably seen some recent posts about PatientsLikeMe’s new Open Research Exchange. Medical researchers will be using our ORE website to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe members will have an opportunity to give feedback on their work, putting them – the patients – at the center of new medical research.
We wanted to take a quick second to introduce our blog followers to ORE pilot researcher Dr. William Polonsky and share his recent podcast interview with everyone. One of the first clinical health psychologists in the U.S., William has dedicated his career to helping patients with diabetes, conducting research to examine the disease’s critical psychological factors, and lecturing and training healthcare professionals so they can help patients help themselves. The scale he wants to develop on ORE is what he calls the WHY STOP scale. It’s an attempt to understand if you’re eating a meal, how do you decide you’re done?
Most important, William wants to know how new diabetes medications seem to affect people’s satiety, or how full they feel when they eat. On ORE, William aims to create the first instrument to understand when and how these medications affect people, and how other patients can make better use of them.
We’ll be sending out invites next week, so if you’re living with type 2 diabetes and want to add your voice to William’s research, just create a PatientsLikeMe profile. Already a member? That’s great! Just be sure to sign into your profile this weekend and we’ll send an invite along.