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Patients as partners: Member Peggy on the diagnosis journey (Part 2)

Earlier this week, member Peggy (peggyznd) illustrated the 2015-2016 Team of Advisors’ Partnership Principles by sharing how to advocate for yourself and work with your doctor in your diagnosis journey. Here, she talks about finding a specialist, questioning your diagnosis and switching doctors. Peggy reminds all patients play an active role in their health: “Be like the […]

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Patients as Partners: Member Peggy on the diagnosis journey (Part I)

1 Comment / Conditions, Patient Experiences / By patientslikeme

Last week, Team of Advisors member Jeff kicked off a series of conversations about the Partnership Principles with his thoughts on partnering better with your care team. Today, Peggy (peggyznd) digs deeper into one area where strong relationships are key: getting diagnosed. Peggy draws from her own experience with kidney cancer and breast cancer to

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Patients as Partners: Member Jeff on teaming up with your doctors

2 Comments / Conditions, Parkinson's Disease / By patientslikeme

This year, the Team of Advisors has been thinking about partnerships in healthcare. They introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — medical students, clinical trial coordinators, and “normals.” Now, they’re each sharing personal stories about these principles in

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Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results

Parkinson's Disease / By patientslikeme

It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire. In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth

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Patients as Partners: Managing High Blood Pressure questionnaire results

Patient Experiences / By patientslikeme

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

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

1 Comment / ALS, Crohn's Disease, Epilepsy, Idiopathic Pulmonary Fibrosis, Organ Transplants, Patient Experiences, Pulmonary fibrosis, Ulcerative Colitis / By patientslikeme

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

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Patients as Partners: The WHYSTOP Scale questionnaire results