how I became an e-patient


found on the net, how I became an e-patient, JoPM, positive patterns, pts as teachers

Rheumatoid e-Patients Share the Spotlight at Medical Conferences

The Journal of Participatory Medicine has published a narrative by Kelly Young entitled “Present, Patient, and Accounted for: How and Why Patients Are Present at Scientific Meetings of the American College of Rheumatology.” Young describes how the Rheumatoid Patient Foundation evolved from her and other e-patients’ efforts to better understand their condition through online research […]

Read More
how I became an e-patient, JoPM, positive patterns, pt/doc co-care, reforming hc

A physician who really understands patient-centered care

The Journal of Participatory Medicine has just published “The Patient Will See You Now,” a thought-provoking and rather moving narrative by John Krueger, MD. In telling his own story of becoming and maturing as a physician, the author persuasively argues that the key to practicing patient-centered medicine is devoting time to listen to patients’ stories […]

Read More
e-pts resources, general, how I became an e-patient, medical records

Kenneth S. Spriggs: The Benefits Of Visualizing Your Medical Data

Guest blogger Ken Spriggs talks about how he made sense of his medical data by creating a graphic electronic health record, the DIYEHR. [Update 11/25: the data visualization that Ken created is so extraordinary that we’re adding it here, four days after the original post. LOOK how he helped his physicians “get” his medical history! […]

Read More
general, how I became an e-patient

Elaine Schattner: Don Berwick, Head of CMS, on the Value of Patient-Centered Care

Usually we talk about participatory medicine at the level of the individual care relationship, but increasingly we’re seeing the need to “Design and create a safe, decent, patient centered healthcare system.” And as we start to get real about that – concrete, tangible change– I’ve heard people wonder, “What do they mean by patient-centered?” Thanks […]

Read More
ethics, general, how I became an e-patient, shared decision making

Kari Ulrich: Experienced from both sides of the bed

This guest post by Kari Ulrich, RN, originally appeared in a fibromuscular dysplasia e-patients’ blog. The November 2011 issue of Reader’s Digest reads in big, bold print, “50 Secrets Nurses Won’t Tell You.” Articles like this create fear and mistrust in the patient community.

Read More
e-patient stories, how I became an e-patient, Why PM

Next “doctor as e-patient”: Howard Luks, MD

We’ve sometimes written about doctors as e-patients. (There are a lot!) Here’s the next. SPM member Howard Luks MD, orthopedist, had some symptoms. He spoke to his physician and GI doc, who gave him pills. It didn’t make sense to him. So he did what a lot of us do: “Then I headed onto a […]

Read More
end of life, general, how I became an e-patient, key people, news & gossip

Steve Jobs’ Cancer Denial

The 60 minutes interview with Steve Jobs’ biographer is an intriguing piece that gives us a few insights into Steve Jobs and his battle with pancreatic cancer. But the most disturbing part of the interview for me was watching Walter Isaacson, a former editor of TIME Magazine, talk about how Jobs was in complete denial […]

Read More
end of life, found on the net, general, how I became an e-patient, JoPM, patient networks, social media

The unexpected power of storytelling

The Journal of Participatory Medicine recently published a new commentary, “A Skydiver Jumps, and an Online Community Exults,” about the unexpected power of storytelling in a lung cancer support group. After sharing an uplifting story with her online group, Patricia Flowers is surprised to learn how it moved and inspired her fellow members. This article […]

Read More
general, how I became an e-patient, pts as teachers

Neel Shah: Using bedside stories to unmuddy the waters

Guest blogger Dr. Neel Shah is the Executive Director of and a senior resident in the Massachusetts General Hospital-Brigham & Women’s Hospital combined residency in Obstetrics and Gynecology. Last year, the nonprofit that I direct launched an unusual essay contest — we asked doctors and other care providers to tell us about their mistakes, […]

Read More
found on the net, how I became an e-patient, JoPM

The Journal has just published a commentary by SPM member Kathy Kastner, “My 8-Point Participatory Philosophy: What Makes Me a Participatory Patient.” The author describes the “aha moment” when she decided to become a participatory patient and shares the attributes that helped her achieve her goal — they include discipline and hard work, as well […]

Read More