found on the net


e-patient stories, found on the net, policy issues, reforming hc

Angela Lundberg: Health Insurance & RA: Dangerously Uncovered

Member Angela Lundberg’s blog article was just published for It discusses the high out-of-pocket costs of health insurance for people who already have insurance. Health Insurance & RA: Dangerously Uncovered Besides the benefits she got from Obamacare, Angela also touches on the burden of disease for the chronic patient: Overwhelmed with work and life […]

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e-patient stories, found on the net, key people

From Regina Holliday’s blog: on Patient Advocacy

Beautiful and comprehensive blog post from Regina Holliday about different types of patient advocates, the evolution of the patient as speaker, consumer, policy-igniter and her own work. A short quote, but please read the whole article, it was so difficult to pick just a paragraph: It is very easy to push aside someone’s story, […]

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found on the net, JoPM

New in our journal: Evaluation of a Lay Health Educator Model with Low-Income Latinas

Our society’s open-access Journal of Participatory Medicine has not gotten enough play, so to speak, on this blog. Let’s try posting something about each article as it emerges. Email subscribers will receive them like any other post; online these posts will appear in the “Found on the Net” sidebar at bottom right. Participatory Group Prenatal Education […]

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e-patient stories, end of life, found on the net, medical records, pt/doc co-care, pts as teachers

Forbes article featuring Carol Gunn: One Doctor’s Quest To End The Plague Of Screwed-Up Medical Diagnoses

Carol Gunn, an SPM physician member, was featured in a Forbes article about her sister’s misdiagnosis, and her mission after her sister’s death. Carol’s tips for patients to avoid being victims of diagnostic mistakes: Tip #1: Get a second opinion that’s completely independent. Although this may seem obvious, many patients make the mistake of seeking out second […]

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e-pts resources, found on the net, policy issues, positive patterns

Crohnology Blog: Am I disabled?

The series of blog posts at the online community website Crohnology continues for patients with IBD. Duncan Cross has a post that is interesting for anyone with an autoimmune or other disabling chronic condition: Am I disabled? It discusses the Americans with Disabilities Act in 1990, and the extension in 2008.

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found on the net, positive patterns, pts as teachers, research issues

Crohnology blog: “Doctor Thyself: How Patients Self-Care”

The site Crohnology, well known patient community for patients with IBD (Inflammatory Bowel Disease), recently started focusing their blog on explaining IBD- focused research to patients. Their most recent blog post describes a study that studied what patients with IBD do for self-care. This is a topic dear to our hearts and we are doubly thrilled […]

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found on the net

Healthcare Econ 101 from SPM’s Nick Dawson

Our fearless leader, Nick Dawson, has a terrific piece up on about the issues around building a children’s hospital in Richmond, Virginia. An excerpt: 100% of healthcare costs are passed onto the public. Most costs seem to be borne by insurance companies. But, it’s important to remember that the pot of money used by […]

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e-pts resources, found on the net, positive patterns, pt/doc co-care, pts as teachers

“Inside Medicine at Weill Cornell: Meeting in the Middle”

Weill Cornell produced a series of mini-documentary style videos showcasing mentoring at their institution. This final video specifically focuses on how patients mentor their students. Go Weill Cornell! Let’s hope we will find out more about their LEAP (Longitudinal Educational Experience Advancing Patient Partnerships) program!

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e-patient stories, found on the net, positive patterns, reforming hc

Health Affairs – Narrative Matters: Suzanne Mintz’s article about caring for caregivers

Our member Suzanne Mintz, a Family Caregiver Advocate, shares the link to her Narrative Matters article/podcast in the current issue of Health Affairs: The Double Helix: When The System Fails The Intertwined Needs Of Caregiver And Patient The policy recommendations for improving care for families living with multiple chronic conditions include: Document primary family […]

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found on the net, positive patterns, research issues, trends & principles

From BMJ: The BMJ’s own patient journey – Seeks to promote patient partnership by walking the talk

An interesting editorial in the BMJ (British Medical Journal) describes BMJ’s path to including patients in reviewing the articles and research published in the Journal. I hope this initiative will be successful and copied by the healthcare world. Our new strategy aligns with our “too much medicine” and “open data” campaigns and our support […]

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