patient safety

Communicating drug risks/benefits so the message really gets through

4 Comments / Conditions, Patient Experiences / By

Last month, Jim, a member of the PatientsLikeMe Team of Advisors, was invited by Sally Okun, PatientsLikeMe’s VP Advocacy, Policy & Patient Safety, to present at the Drug Information Association (DIA) Pharmacovigilance Conference. He also led a lunch roundtable for drug risk/benefit communications experts. Sally, who also participated on the roundtable panel, says requests for […]

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What do PatientsLikeMe members think about the Affordable Care Act?

20 Comments / Patient Experiences / By

With a new administration in Washington, the future of “Obamacare” is uncertain. So we wanted to know: What do patients think about potential changes to the Affordable Care Act (ACA)? More than 2,000 PatientsLikeMe members recently shared their thoughts in the largest patient poll on the 2010 health care law. Previous large-scale polls about the

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Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF

Idiopathic Pulmonary Fibrosis, Patient Experiences, Pulmonary fibrosis / By

On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended

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Navigating the Healthcare System with Disabilities

5 Comments / Multiple Sclerosis / By

Are medical facilities prepared to meet the needs of disabled individuals?  It would seem reasonable to think so, but according to PatientsLikeMe members, that’s not always the case. For example, consider the case of a female patient using a powered wheelchair who doesn’t have the upper body strength to transfer herself out of the chair. 

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Creating Your “A Team” for Health

2 Comments / Conditions, Patient Experiences / By

Today’s guest post is written by PatientsLikeMe Vice President for Advocacy, Policy and Patient Safety Sally Okun, RN, MMHS. Getting health care can often feel like you’re trying to put together a difficult jigsaw puzzle, only to find that some of the pieces are missing. Even under the best circumstances, navigating the health care system is

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$70,000 at Stake in the “Reporting Safety Events Challenge”

Patient Experiences / By

How serious is the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology (ONC) about increasing patient safety?   So serious that they are running a contest challenging the best and brightest developers to create a platform that makes it easier to report a patient safety event electronically. The

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PatientsLikeMeOnCall: From Open Data to Actionable Data

3 Comments / Patient Experiences / By

Every Friday, PatientsLikeMe holds “Journal Club” in our Boston headquarters with a different guest speaker. Last week we were privileged to hear from Dave Hale, Project Manager for Pillbox, a National Library of Medicine (NLM) and Federal Drug Administration (FDA) patient safety initiative. And thanks to PatientsLikeMeOnCall’s new podcast series “It’s Friday – Let’s Journal

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PatientsLikeMeOnCall™: “A Look Ahead” at Patient Safety (Episode 3)

ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Rare Diseases / By

“What are the things that affect a patient’s safety? It’s everything – it’s not just whether the drug is good or bad, it’s the whole process.” –Jamie Heywood Why does the healthcare industry need to shift from drug safety to patient safety? PatientsLikeMe Co-Founder and Chairman Jamie Heywood explains his view in this week’s edition of

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Drug Safety: It’s About More Than Just Compliance

2 Comments / Epilepsy, Multiple Sclerosis, Organ Transplants / By

Engaging in social media presents a number of uncertainties to pharmaceutical companies. In a world where much of the medical dialog has moved online, these uncertainties have emerged due to absent or unclear guidelines from the Federal Drug Administration (FDA), privacy and regulatory concerns about engaging directly with patients, and the potential for significant consequences.

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