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Hospitals are hiding prices from patients, advocacy report says

Healthcare Dive

Patient Rights Advocate concluded that some hospitals owned by Ascension and HCA Healthcare are omitting rates for medical services from files made public under new federal rules.

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Educating patients to advocate for themselves and for policy change

Healthcare It News

Gözde Susuzlu Briggs, programme manager for the European Patients' Forum, discusses the "Data Saves Lives" initiative, which explains digital data and AI concepts to patients and encourages involvement in patient advocacy organizations.


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Hearing Patients and Their Caregivers First Hand at the RARE Patient Advocacy Summit

Healthcare IT Today

Kind of on a whim I decided to head to San Diego (a great place for whimsical travel) for the RARE Patient Advocacy Summit by Global Genes. To be fair, Effie Parks from Once Upon a Gene Podcast had told me about it before and I’d been on the fence on whether I should go or not.

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Blue Cross Blue Shield of Massachusetts delays controversial anesthesia policy

Fierce Healthcare

The health plan said its delaying implementation of its new monitored anesthesia care policy, just one month after we reported on patient advocacy groups' concerns over the policy. A Blue Cross Blue Shield of Massachusetts policy that was set to begin Jan. |

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Kalderos Appoints Daryl Todd as Chief Strategy Officer

HIT Consultant

– Todd, a seasoned legal professional with extensive experience in the life sciences industry, brings a unique combination of legal expertise and patient advocacy to the table. A Passion for Patient Advocacy Todd’s commitment extends beyond legal expertise.

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Why Clinical Data Research Needs a Makeover in 2023

HIT Consultant

That conversation got me thinking: what if patient advocacy groups had the same “strength in numbers” philosophy when it came to clinical data? Patient advocacy groups and researchers can view themselves as a collective, giving them influence as they seek access to datasets. What if they could take collective action too?

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Rare Genomics Institute Brings Hope To Rare Disease Patients

Electronic Health Reporter

By Romina Ortiz, COO and vice president of patient advocacy, Rare Genomics Institute. This article is copyrighted strictly for Electronic Health Reporter. Illegal copying is prohibited. Getting a diagnosis for a rare disease is a long and often painful journey that can take an average of five years1 and hundreds of doctor visits.