In this installment of our Patients as Partners blog series, we’re sharing results from the High Blood Pressure Management, Adherence, Attitudes and Health Behavior Instrument – whew, that’s a mouthful! Doctors and nurses can use the instrument to better understand how people manage high blood pressure at home, and can help everyone learn more about preventing life-altering conditions that result from high blood pressure, such as stroke, heart attacks, heart failure and chronic kidney disease.
Over 500 PatientsLikeMe members who are living with hypertension worked with our research partner Tamara Kear, Ph.D. R.N., CNS, CNN from Villanova University on our Open Research Exchange (ORE) platform to help make the instrument the best it can be.
From one person we heard — “I have been diagnosed with white coat syndrome. I wore a monitor for 24 hours and it was regular.” What’s that? Read on in the results.
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.
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