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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. 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. This article is copyrighted strictly for Electronic Health Reporter.

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ATA hosts series this week on the value of virtual care

Healthcare It News

ATA is taking the week to encourage telehealth solution providers, hospital systems and medical practices, patient advocacy leaders, policymakers and other stakeholders to examine hybrid care models that include in-person and virtual care. WHY IT MATTERS.

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Why Clinical Data Research Needs a Makeover in 2023

HIT Consultant

Data access and patient privacy don’t have to be at odds. When I was in grad school at MIT, I worked with classmates and post-doctoral students to try to answer an important question: “How can we give researchers access to patient records in a more ethical way?” We’re united behind a common goal: better patient outcomes.

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Hands-on cardiac education pays dividends for patients and others, says Abiomed

Healthcare It News

Relationships between the patients may begin when those recently treated are connected with Abiomed's patient advocates that are years out from their cardiac interventions, Shannon Kjellsen, Abiomed's patient advocacy manager, told Healthcare IT News at the event. " "These people here are way too humble.

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A Look at 3 Entrepreneurial Efforts in the Rare Disease Space

Healthcare IT Today

I previously shared about the amazing time I had listening to patients and caregivers at the RARE Patient Advocacy Summit that is hosted by Global Genes. Families could then take this information to their doctors to evaluate treatments that could help them. Watch our interview with Inston below to learn more.

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Retail Clinics’ Growing Role in Health Care and Prescription Drug Sales

Jane Sarashon

The second chart graphs average charge per claim for common retail clinic diagnoses, connecting the dots between site-of-care and lower costs in retail clinics compared with hospital outpatient departments, doctor’s offices, and urgent care centers which are higher-cost than retail clinics.

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Massachusetts DPH Delays Enforcement Penalties for State Surprise Billing Law

Healthcare Law Today

This is likely to allow DPH time to take in questions and recommendations from provider, plan and patient advocacy constituencies. These delays reflect governmental recognition of the complexity and challenges involved in implementing the new solutions to out-of-network billing.