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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- Filed Under: Patient Experiences
- Tags: as, CNN, CNS, exchange, hypertension, open, Open Research Exchange, ORE, partners, patients, Patients as Partners, PatientsLikeMe, Ph.D. R.N., Research, results, survey, Tamara Kear
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
